tag:blogger.com,1999:blog-67181693994822317242024-03-06T15:00:57.855-05:00Beth's Adventures with Neuroendocrine CancerAn overview of my journey dealing with a rare cancerAnonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.comBlogger90125tag:blogger.com,1999:blog-6718169399482231724.post-5619508968582393232017-01-30T23:48:00.000-05:002017-01-30T23:48:55.778-05:00Did April Fool’s Day Come Early This Year?<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Last month, I spent a night in the hospital after a liver embolization. I stayed in
a very small double room with a roommate.
Recently, I got an explanation of benefits from United Healthcare, my
secondary insurance (see below). Note
that the amount billed for one night at Memorial Sloan Kettering Hospital is
$55,746.78! Who bills that amount for a
one night hospital stay? </span></div>
<br />
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Do you think this is a typo? I know NYC rents are rising fast but this is
ridiculous!<o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com5tag:blogger.com,1999:blog-6718169399482231724.post-75037642574939049622017-01-19T20:56:00.000-05:002017-01-19T20:56:07.692-05:00Second Time for Bland Liver Embolization<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Wow! It’s been a while since I wrote a blog post! Since my last post in August, I had another
CT scan in November that showed that the group of tumors in the left side of my
liver had grown from an area of 6.8 x 1.7 cm to 8.3 x 2.2 cm. This was not one tumor but a group of about
10 smaller tumors. My doctors said I
should do another liver embolization - on my left side this time. This procedure
was set for December 5<sup>th</sup>.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I knew this was coming and was glad to have had about 5
months between embolizations. The procedure was similar to the one I had on
July 15<sup>th</sup> but I spent less time in the hospital. The pain was worse from the recent
embolization, probably because the tumors in my left side were much more
concentrated in one area. That’s my
theory, anyway. I felt better in about 3
weeks and was reasonably healthy for Christmas and the New Year. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">My January 7<sup>th</sup> post-embolization CT scan showed
that the tumors on the left side of my liver had shrunk and were mostly dead (“necrotic”).
There was a tumor in the middle/right segment of my liver that was embolized in
July but still had some living (“viable”) tumor showing on a CT scan. My interventional radiologist revisited that
tumor in my recent surgery to embolize the areas that were not being fed by the
hepatic artery. Unfortunately, he was
not able to completely “kill” that tumor and that’s why there is still some viable
tumor there. Overall, my doctors
(interventional radiologist and oncologist) were very pleased with the results
of the procedure.</span><span style="font-family: "arial" , sans-serif; line-height: 107%;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">My “syndrome” which had consisted of very occasional
flushing has completely disappeared. I
stopped taking Sandostatin LAR in January 2016, prior to my PRRT clinical trial
and have not resumed since. My doctor
and I have discussed whether I should stay on a somatostatin analogue since I
don’t have syndrome and my tumors have already progressed while on Sandostatin
LAR. These are the issues that came up:<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
</div>
<ul>
<li><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">Patients who don’t take Sandostatin LAR have a
higher incidence of carcinoid heart problems.
My doctor ran an echocardiogram and found that I have no evidence of any
heart problems</span></li>
<li><span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal; line-height: normal;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">My tumors started progressing in late 2015 so
I’m not sure whether Sandostatin is still helping them grow “less fast” or not.
My doctor doesn’t know either.</span></li>
<li><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">I do not have “carcinoid syndrome” at all right
now</span></li>
<li><span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal; line-height: normal;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">Sandostatin LAR has always caused me icky side
effects – mostly gastrointestinal - that make my life miserable</span></li>
</ul>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">After reviewing the above, we both agreed that is was ok
for me not to take Sandostatin LAR. </span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">At this point, my tumor load is quite low with only smaller
tumors located in inoperable places.</span><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt;">I
am in “watch and wait” mode for 3 months until I have another scan. I hope 2017
brings me more stability and fewer medical procedures!</span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com8tag:blogger.com,1999:blog-6718169399482231724.post-65051946847093433282016-08-18T18:58:00.000-04:002016-08-18T18:58:00.478-04:00Bland Liver Embolization was a Success!<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">On July 15<sup>th</sup>, I had a bland liver embolization
on the right/middle of my liver. This is
a minimally invasive surgical procedure where “beads” are put into the arteries in the liver to block the blood flow to the
tumors. The beads are inserted via a small
tube in an artery the groin area. By blocking
the blood flow to the tumor, it should experience necrosis or tumor death. For more information on the different types
of liver embolizations and an explanation of the procedure, please take a look
at the blog Walking with Jane as follows:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><a href="http://walkingwithjane.org/2015/04/28/liver-embolization-some-background/">http://walkingwithjane.org/2015/04/28/liver-embolization-some-background/</a><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">My doctors explained that the bland embolization was safer
for me than either chemoembolization or radioembolization because my tumors
were extremely vascular, meaning there was a lot of blood flow to the
tumors. Both chemoembolization and radioembolization
use beads treated with chemotherapy or radiation, respectively, to treat the
tumors. The risk of treated beads is
that they can miss the target of the liver tumors and apply chemotherapy or
radiation to the wrong areas of the body. Bland embolization, which uses
untreated beads, can also miss the target and wind up in another area of the body
but these beads may be less harmful without the chemotherapy or radiation. <o:p></o:p></span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">When having this procedure, it is important to have an
interventional radiologist that has a lot of experience with liver
embolization.</span><br />
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p></o:p></span></div>
</div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Many times, a patient will need two treatments, one for
each side (lobe) of the liver. These
treatments are usually about a month or more apart. I just had a one month CT scan and a post-op
appointment with the interventional radiologist who said that the embolization
went very well and that the tumors that were embolized were dead. He showed me the images on the CT scan and
they were all black. The largest mass in
my right lobe was 8.8 x 4.8 cm and the next largest was 4.4 x 3.1 cm. <o:p></o:p></span><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">At this point the tumors in the left side of my liver are
very small and my doctors do not believe that they should be embolized unless
they grow.</span><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">They will monitor with
another CT in November and do the left side embolization if they grow.</span><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;"> </span><br />
<div class="MsoNormal">
<br /></div>
</div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">After the embolization I experienced postembolization
syndrome (fever, nausea, vomiting, abdominal pain, and elevated liver
enzymes). It was quite painful for 2-3
days after the procedure. After about a
week, I felt a little better but I could still feel my liver area every time I
inhaled, which was annoying. This lasted
several days and then I really had no symptoms after about 3 weeks
post-embolization. My alkaline phosphatase,
one of the liver enzymes measured in a comprehensive metabolic panel is still
elevated and my doctor said it could stay that way for a few months. The rest of my liver enzymes are normal now. Also, I used to have occasional flushing, even when taking Sandostatin LAR. Since the embolization, I have not had one episode of flushing.<o:p></o:p></span></div>
<br />
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">On another interesting note, the tumors outside my liver,
mostly in and around my lymph nodes, have been stable since I had the first
round of PRRT in the clinical trial.</span><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">I
wonder if the PRRT might have worked on these tumors, just not for the liver lesions.</span><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">Now it’s time to give my body a break from treatments for a
few months.</span><br />
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p></o:p></span></div>
</div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com8tag:blogger.com,1999:blog-6718169399482231724.post-22018610409976891162016-06-23T15:05:00.003-04:002016-06-23T15:10:35.084-04:00Peptide Receptor Radionuclide Therapy (PRRT) Did Not Work for Me<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Ugh, after one round of PRRT with Lu-177-dota-JR11, my existing tumors
progressed in the liver and there was also a new tumor seen there. This is my first new tumor since my diagnosis
in 2010. Given this information, I was
removed from the clinical trial since the treatment did not work as expected for
me. The tumors in the lymph nodes were
stable or slightly smaller but the growth of the liver tumors and the new
1.4x1.3 cm tumor in the liver was what disqualified me. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I was under the impression, wrongly, I guess, that if my Ga-68
scan “lit up like a Christmas tree” that I would be a good candidate for PRRT. In reality, the objective response rates, as
shown by multicenter reports from Europe are seen in 15% - 35% of patients (see
this article <a href="http://www.ncbi.nlm.nih.gov/pubmed/25117465" target="_blank">http://www.ncbi.nlm.nih.gov/pubmed/25117465</a>). This is much lower than I thought given the information
about PRRT that I have seen and heard through my experience. In reality, I do not read a lot of scientific
papers and depend on my doctors to give me information. Dr. Reidy-Lagunes said that she feels bad
when she recommends patients for PRRT in Europe because they are paying a lot
of money out of pocket for results that are great if it works for them but the
chances of a complete response, meaning tumors are gone or have shrunk 50% are
less than 35%. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I asked Dr. Weber, the head of nuclear medicine at Sloan
Kettering, if he thought that I would respond more positively to other radiolabeled
agents such as Y-90 or other peptides such as dotatate or dotatoc and he said “It
is hard to predict if other forms of PRRT will potentially be effective. All the clinically used PRRTs target the
somatostatin receptor (as does JR11). Therefore
the limited effect of JR11 on the liver metastases also decreases the
likelihood of a response to other PRRT agents.”
<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">So, unfortunately my PRRT experience was not
successful. I’m still glad I entered
this trial and I would have even if I had known that my probability of
objective response was 15% - 35%. This
is not to say it will be unsuccessful for others as I know of one other
participant in this PRRT clinical trial that has had 50% reduction in tumor
size after one round. I think it is
important to understand that although PRRT is a great new treatment that is
going to be available soon in the US, it does not always work, even if you have
the proper receptors. <o:p></o:p></span></div>
<br />
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Dr. Reidy-Lagunes and Dr. Chan both said that a liver
embolization is the next treatment I should consider. I am meeting with an interventional
radiologist tomorrow to discuss this procedure. <o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com7tag:blogger.com,1999:blog-6718169399482231724.post-34082334352743873182016-05-30T10:45:00.000-04:002016-05-30T11:10:18.735-04:00When Breath Becomes Air <div class="MsoNormal">
<u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">When Breath Becomes Air </span></u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">by
Paul Kalanithi is one of the best books I’ve read about the experience of life,
cancer and mortality. The author had
degrees in English literature and biology and chose to go to medical
school. He was diagnosed with lung
cancer during his residency in neurosurgery at Stanford. He came to my attention after I read an
editorial he wrote in The New York Times that I shared on my blog here:</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;"> </span><a href="https://bethsadventureswithcancer.blogspot.com/2014/01/how-long-have-i-got-left.html" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">https://bethsadventureswithcancer.blogspot.com/2014/01/how-long-have-i-got-left.html</a><span style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;"> </span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">This is my definite “best book” pick of
2016, even though it is only May. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Below are some quotes from the book. I would definitely recommend reading the book
as one can’t get the whole amazing experience from a few quotes.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">On dissecting a cadaver in medical school: “Cadaver dissection epitomizes, for many, the
transformation of the somber, respectful student into the callous, arrogant
doctor.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">On being diagnosed with cancer: "I began to realize that coming in such close
contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed I knew that
someday I would die but I didn’t know when.
After the diagnosis, I knew that someday I would die but I didn’t know
when. But now I know it acutely.”<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">“The word <i>hope</i>
first appeared in English about a thousand years ago, denoting some combination
of confidence and desire…Medical statistics not only describe numbers such as
mean survival, they measure our confidence in our numbers, with tools like
confidence levels, confidence intervals and confidence bounds…Could we divide
the curve into existential sections from ’<i>defeated’</i>
to ‘<i>pessimistic</i>’ to ‘<i>realistic’</i> to ‘<i>hopeful</i>’ to ‘<i>delusional’</i>? It occurred to me that my relationship with
statistics changed as soon as I became one.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">“While being trained as a physician and scientist had
helped me process the data and accept the limits of what that data could reveal
about my prognosis, it didn’t help me as a patient. It didn’t tell Lucy and me whether we should go
ahead and have a child, or what it meant to nurture a new life while mine
faded. Nor did it tell me whether to
fight for my career, to reclaim the ambitions I had single-mindedly pursued for
so long, but without the surety of the time to complete them. Like my own patients, I had to face my
mortality and try to understand what made my life worth living.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">“I would have to learn to live in a different way, seeing
death as an imposing itinerant visitor, but knowing that even if I’m dying, until I actually die, I am still living.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">“The tricky part of illness is that, as you go through it,
your values are constantly changing. You
try to figure out what matters to you, and then you keep figuring it out. You
may decide that you want to spend your time working as a neurosurgeon but two
months later, you may feel differently.
Death may be a one-time event, but living with terminal illness is a
process.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">“Time for me now is double edged. There are, I imagine, two responses to that realization. The most obvious might be an impulse to
frantic activity: to ‘live life to its fullest’, to travel, to dine, to achieve
a host of neglected ambitions. Part of
the cruelty of cancer, though, it’s not only that it limits your time; it also
limits your energy, vastly reducing the amount you can squeeze into a day.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Enjoy the book and honor our fallen soldiers on this
Memorial Day.<o:p></o:p></span></div>
<br />
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<br /></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com8tag:blogger.com,1999:blog-6718169399482231724.post-76951239025566936022016-04-09T16:05:00.001-04:002016-04-09T16:05:33.602-04:00Peptide Receptor Radionuclide Therapy (PRRT) Clinical Trial at Memorial Sloan Kettering<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">It’s been a long time since my last post. I have been doing a lot of procedures for the
PRRT clinical trial that I am a participant in at Sloan Kettering (MSKCC). <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I was lucky enough to get into this clinical trial because
my doctor, Dr. Chan at Dana Farber, called Dr. Reidy-Lagunes at MSKCC to see if
there was space available for me if I met the qualification criteria. I was happy that they could cooperate with
each other even though they work at competing institutions – sometimes politics
can interfere with the best interests of patients.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">This clinical trial is testing the use of a new peptide
(DOTA-JR11). The goal of the trial is that in patients with positive
somatostatin receptors, the DOTA-JR11 will bind to the tumors and the attached
radiation Lutetium-177 (Lu-177) can kill the cancer cells. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">The clinical trial has been extremely scan intensive and I
had the following two scans before even entering the trial:</span><br />
<br />
<ul>
<li><span style="font-family: arial, sans-serif; font-size: 12pt; line-height: 107%;">CT scan of the chest, abdomen & pelvis</span></li>
<li><span style="font-family: arial, sans-serif; font-size: 12pt; line-height: 107%;">Octreoscan</span></li>
</ul>
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<ol>
</ol>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Diagnostic
Phase<o:p></o:p></span></b><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Once in the trial, I had the following scans, and this was
just in the diagnostic, not the treatment part of the trial:</span><br />
<br />
<ul>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">Glomerular
Filtration Rate (GFR) - Scan to measure kidney function</span></li>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">68-Ga PET scan with 68-Ga-DOTA-JR11 - </span><span style="font-family: arial, sans-serif; font-size: 16px; line-height: 17.12px; text-indent: -24px;">Scan to measure if my tumors have the right receptors to bind to DOTA-JR11</span></li>
</ul>
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<ol>
</ol>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">These 4 scans were all done within less than a week. My insurance company (Aetna) routinely denies
most of my scans and they did so with the GFR scan. Dr. Reidy had to call their affiliate company
EviCore who acts as Aetna’s “bad cop” because they are the entity that denies
most scans, to explain that it was a safety issue and then it was
approved. The good news is that I passed
these scan diagnostics as well as the blood and other tests. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Next phase of the trial: <o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Treatment
Phase<o:p></o:p></span></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">The first step of the treatment phase consisted of dosimetry. This procedure is a test of Lu-177 in the
body to see how much radiation it delivers to the tumors and to your normal
organs, primarily the kidneys. The
procedure is to give the patient IV amino acids to decrease the amount of
Lu-177 that is absorbed by the kidneys.
Then an injection of a small dose (50 millicuries) of Lu-177 is
given. The IV amino acids are given for
3 hours. Immediately after the IV is
done, the patient gets a 20 minute PET scan that shows the distribution of the
Lu-177 in the body; i.e., the kidneys, the tumors and other organs. In addition, the same 20 minute scan is done
at 24 hours, 4 days, and 8 days after the dosimetry. There is also a SPECT/CT scan done at 24
hours to see a 3-D image of the distribution of Lu-177 in the body. This series of scans is what the nuclear medicine doctors and medical
physicist (never heard of that before!) looked at when they decided what dose
of Lu-177 to give me when I did my first round of PRRT a few weeks later.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">You can only imagine how all these scans got my insurance
company (Aetna/EviCore) into a denial frenzy!
I got letters and robocalls from EviCore practically every day for the
past month as they tried to deny my scans and then approve them after a call from
the doctor. What a crazy health system
we operate in! </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-6XWoaT5t3GQI7pnVpdgng_yILSXITmbicVjWRhgrpHvnRB3KG6KFvpwO6YsBxsfVs6okfYvJUe8tEK7oGRZLSp73yXUC4OpJ5UsaNcBGbATJj6xZ61C8NoA4fKUnKeB7G5DUmPe6tWY/s1600/insurance-denial.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-6XWoaT5t3GQI7pnVpdgng_yILSXITmbicVjWRhgrpHvnRB3KG6KFvpwO6YsBxsfVs6okfYvJUe8tEK7oGRZLSp73yXUC4OpJ5UsaNcBGbATJj6xZ61C8NoA4fKUnKeB7G5DUmPe6tWY/s320/insurance-denial.jpg" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-6XWoaT5t3GQI7pnVpdgng_yILSXITmbicVjWRhgrpHvnRB3KG6KFvpwO6YsBxsfVs6okfYvJUe8tEK7oGRZLSp73yXUC4OpJ5UsaNcBGbATJj6xZ61C8NoA4fKUnKeB7G5DUmPe6tWY/s1600/insurance-denial.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: left;"><br /></a></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">The dosimetry left me quite fatigued and nauseous for about
a week afterward. I felt like I had the flu.
Dr. Reidy gave me a prescription for Zophran, an anti-nausea medication
to take 3 times a day as needed for up to 15 days. Of course, my drug provider, Express Scripts
has set up this drug so that I can only get 12 pills at a time, meaning that it
takes 4 trips to Walgreen’s to get my 45 pills.
Nice way to treat a nauseous cancer patient!<o:p></o:p></span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I had the first round of PRRT a little over a week
ago. The procedure was exactly the same
as the dosimetry except the dose of Lu-177 was 200 millicuries. I’ve now finished all the scans and the
flu/nausea symptoms are getting better.
I’ve managed to use the same 45 Zophran pills for both the dosimetry and
PRRT so as not to spend so much time on line at Walgreen’s….I’m still getting
letters every day from Aetna/EviCore asking my doctor for more information and
denying the post-PRRT scans….<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">In between the rounds of PRRT, I will be getting blood
tests done every 2 weeks.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">This clinical trial allows for 2 rounds of PRRT. I believe my next round will be in 10-14
weeks. I will have a scan right before
the next round to see if my tumors have shrunk, stayed stable or grown. If they have grown, I will not be doing the
next round as the PRRT would not have worked as expected. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I’m hoping that that my tumors shrink and am looking
forward to seeing what my next scan shows in a few months. <o:p></o:p></span></div>
</div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com8tag:blogger.com,1999:blog-6718169399482231724.post-81708584993065777262016-02-14T21:10:00.002-05:002016-02-14T21:10:26.586-05:00So Much for Tumor Stability<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">I am now off the Cabozantinib clinical trial. My latest MRI
showed 11% growth in my tumors since the last scan on November 22<sup>nd</sup>. Basically my tumors grew 22% in the 6 months
I was on this clinical trial. Not good!
I have now decided that peptide radionuclide receptor therapy (PRRT) is my next
treatment plan.This treatment is not FDA approved in the US, so the only current
availability is:</span></div>
<div class="MsoListParagraphCxSpFirst">
</div>
<ol>
<li><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;">A clinical trial at Memorial Sloan
Kettering Cancer Center (MSKCC)</span></span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-size: 12pt; line-height: 107%;">Going to Excel Diagnostics in Houston to
do the PRRT under a “Right to Try” law. </span><span style="font-size: 12pt; line-height: 107%;"> </span></span></li>
</ol>
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">I could also go to Europe where several countries provide
PRRT to neuroendocrine cancer patients. </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">Given that I live in New York City, going to MSKCC would be
the easiest option.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">Also, my husband is
having medical problems now as well and I am both patient and caregiver, a very
difficult set of responsibilities.</span><br />
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">I met with the MSKCC oncologist, Dr. Diane Reidy-Lagunes,
on Wednesday to discuss the PRRT trial.
Her staff was concerned with my platelet levels because they were below
200 in January, which is the minimum allowed to be admitted this trial. Since I have been off Cabozantinib for about
3 weeks, my labs have been improving and my platelets were fine. I am now scheduled for several scans before
the PRRT occurs. Since I have not been off Sandostatin for 6 weeks, I am
scheduled for the scans later this month.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">It felt strange to go back to MSKCC after leaving my first
doctor there about 4 years ago. Dr.
Reidy and the clinical trial assistants were very nice and professional, unlike
my prior experience. I am looking
forward to being in this trial. I hope
it shrinks and stabilizes my tumors for a while. <o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com7tag:blogger.com,1999:blog-6718169399482231724.post-51358959145332527412015-11-25T22:35:00.001-05:002015-11-25T22:35:04.812-05:00Tumor Stability – Something To Be Thankful For<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">I just had my 4 month MRI in the phase II clinical trial of
Cabozantinib, which I started in August.
My tumors are still stable, although they’ve grown by a small
amount. There were no new lesions or
tumors found. My doctor said the growth
was small, measured in millimeters, and was probably in the range of 5%. Under the RECIST criteria (described below),
this counts as stable disease. I will
continue on this clinical trial until my tumors are no longer stable. I am happy with this result and that my side
effects from the drug are better now that I am on a lower dose.<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">I find the measurement criteria quite interesting. Most people believe that stable disease means
the tumors have not grown at all since the last MRI/CT scan. In fact, these criteria say that the tumors
can grow 20% from when the treatment started before being defined as progressive disease. This is assuming that
there are no new tumors. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 16.8pt; margin-bottom: 6.0pt; margin-left: 0in; margin-right: 0in; margin-top: 6.0pt;">
<span style="color: #252525; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Below is a description of how solid
tumors are measured: <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 16.8pt; margin-bottom: 6.0pt; margin-left: 0in; margin-right: 0in; margin-top: 6.0pt;">
<b><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #252525; font-family: Arial, sans-serif; font-size: 12pt;">Response
Evaluation Criteria In Solid Tumors</span></b><span class="apple-converted-space"><b><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #252525; font-family: Arial, sans-serif; font-size: 12pt;"> </span></b></span><b><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #252525; font-family: Arial, sans-serif; font-size: 12pt;">(RECIST).*</span></b><b><span style="color: #252525; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="background: white; line-height: 16.8pt; margin-bottom: 1.2pt; margin-left: 19.2pt; mso-list: l0 level1 lfo1; mso-margin-top-alt: auto; tab-stops: list .5in; text-indent: -.25in;">
<!--[if !supportLists]--><span style="color: #252525; font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><i><span style="color: #252525; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Complete
Response (CR)</span></i><span style="color: #252525; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">: Disappearance of all
target lesions<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 16.8pt; margin-bottom: 1.2pt; margin-left: 19.2pt; mso-list: l0 level1 lfo1; mso-margin-top-alt: auto; tab-stops: list .5in; text-indent: -.25in;">
<!--[if !supportLists]--><span style="color: #252525; font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><i><span style="color: #252525; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Partial
Response (PR)</span></i><span style="color: #252525; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">: At least a 30%
decrease in the sum of the longest diameter (LD) of target lesions, taking as
reference point the baseline sum LD<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 16.8pt; margin-bottom: 1.2pt; margin-left: 19.2pt; mso-list: l0 level1 lfo1; mso-margin-top-alt: auto; tab-stops: list .5in; text-indent: -.25in;">
<!--[if !supportLists]--><span style="color: #252525; font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><i><span style="color: #252525; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Stable
Disease (SD)</span></i><span style="color: #252525; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">: Neither sufficient
shrinkage to qualify for PR nor sufficient increase to qualify for progressive
disease (PD), taking as reference the smallest sum LD since the treatment
started<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 16.8pt; margin-bottom: 1.2pt; margin-left: 19.2pt; mso-list: l0 level1 lfo1; mso-margin-top-alt: auto; tab-stops: list .5in; text-indent: -.25in;">
<!--[if !supportLists]--><span style="color: #252525; font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><i><span style="color: #252525; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Progressive
Disease (PD)</span></i><span style="color: #252525; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">: At least a 20%
increase in the sum of the LD of target lesions, taking as reference the
smallest sum LD recorded since the treatment started or the appearance of one
or more new lesions<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">* <i>Source: Wikipedia<o:p></o:p></i></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnets6WXP9Ih6q35GQvDZfSNljYuhNhqPlHLzxrBCZ4d6TgHaH77PIZFFyubWUECYio5zEcRmjcMuk8B-zkGzvmH2HhQm8Uyxtn06dYRhBB8WGzWsPFvc_ei_Ua6yHQvaxjicgMVtBjcU/s1600/Thanksgiving1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="128" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnets6WXP9Ih6q35GQvDZfSNljYuhNhqPlHLzxrBCZ4d6TgHaH77PIZFFyubWUECYio5zEcRmjcMuk8B-zkGzvmH2HhQm8Uyxtn06dYRhBB8WGzWsPFvc_ei_Ua6yHQvaxjicgMVtBjcU/s320/Thanksgiving1.jpg" width="320" /></a></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">On this Thanksgiving I am thankful that my tumors are still
stable and that things are status quo.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">I
hope you can find something to be thankful for and I wish everyone a Happy
Thanksgiving.</span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com0tag:blogger.com,1999:blog-6718169399482231724.post-10745310228576419152015-10-05T20:45:00.000-04:002015-10-05T20:45:35.436-04:00Tumor Stability and Quality of Life Issues<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">In late July, I began a phase II clinical
trial of a daily dose of 60 mg of Cabozantinib, also known as Cometriq. This drug is administered once a day with three
20 mg pills. As previously noted, this
is an angiogenesis inhibitor that works to block the blood flow to the
tumors. The clinical trial requires that I have a scan, in my case both an MRI and chest x-ray, after 2 cycles or 8 weeks. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">When I started the trial, I immediately
was very fatigued and after a week or so, I was so exhausted, I could barely
get off the couch. It was difficult for
me to breathe, not due to any pulmonary issues, but because I felt my muscles
were too tired to inhale and exhale. My
doctor told me to stop taking the drug for 5 days and then to begin again at 40
mg per day (2 pills). I did this and the
exhaustion lessened a bit but then I began to have more problems with diarrhea
and weight loss. My liver enzymes were
also elevated as a result of this drug.
My ALT was as high as 115 (range
7-52) and AST was 105 (range 9-30). Both
were within the range prior to starting the trial.
After about a month on 40 mg, I began to get numbness in my fingertips
(neuropathy), had a mouth sore and some red spots on my legs that looked like welts. I also had pain on the bottom of my right
foot that was attributed to the foot part of hand and foot syndrome. Given this toxicity to the drug, my quality
of life was suffering more than I was comfortable with, even if the drug was
going to keep my tumors stable or shrinking. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">Last week I had my 8 week MRI and chest
x-ray and the tumors were stable!</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">This
is great news!</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">Even better, we decided
to lower the dose to 20 mg daily, hoping to stop some or all of these side
effects.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">I’m hoping to continue to be
stable with the lower dose.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">We’ll know
how that works in another 8 weeks.</span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com2tag:blogger.com,1999:blog-6718169399482231724.post-73006895290856937932015-08-08T21:08:00.000-04:002015-08-08T21:09:52.848-04:00Difficult Decisions<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">I haven’t posted in a while because I have been dealing
with further tumor progression and decisions concerning my future
treatment. A previous MRI in March of
this year showed tumor progression. At
that point, my doctor and I decided to increase my monthly Sandostatin LAR dose
from 20 mg to 30 mg and run another MRI in July. Unfortunately, the July MRI showed more tumor
progression. I needed to make a decision
on my treatment plan fairly quickly. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">In my previous post, I described two clinical trials of
angiogenesis inhibitors that are open and recruiting at Dana Farber
(DFCI). After reading the extensive
clinical trial paperwork and discussing my questions with my doctor, I decided
to try Cabozantinib. This drug was
approved by the FDA for thyroid cancer in 2012.
As I previously posted, this is a phase II clinical trial, meaning the
drug is being tested in this case, for a different type of cancer (NETs) to see
whether it works and what might be the best dose. </span><span lang="EN" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ansi-language: EN;">Cabozantinib
is in a class of drugs called tyrosine kinase inhibitors (TKI’s). I don’t have a huge understanding of the
differences between the angiogenesis drugs.
My limited knowledge says that there are two types of drugs that are FDA
approved and being used for NETs– TKI’s like or Sunitinib (Sutent) or mTOR inhibitors
like Evorolimus (Afinitor). The link
below describes how these drugs work:<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ansi-language: EN;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><a href="http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/biological/types/cancer-growth-blockers">http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/biological/types/cancer-growth-blockers</a></span><a href="http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/biological/types/cancer-growth-blockers"><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p></o:p></span></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">The way the clinical trial works is that I will be taking
the drug (3 pills) once a day and being monitored by my doctors every two weeks
(lab work and check-up). I’ll have an MRI after 8 weeks to see if there has
been any change in my tumors.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgutrEPNVCcgP5j3ELqyBsYuOSo9U3dV1YaPqMuTXlhc5cjBK9xteLmnnTvUEYHIswIm9mHAOmsI1xRiwYlLy9UWx1kj00LGNyYglF5qez8AWgyFEVhhLok1Z0m7NnRthMvgIg-YS3o7Ag/s1600/informed+consent.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="283" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgutrEPNVCcgP5j3ELqyBsYuOSo9U3dV1YaPqMuTXlhc5cjBK9xteLmnnTvUEYHIswIm9mHAOmsI1xRiwYlLy9UWx1kj00LGNyYglF5qez8AWgyFEVhhLok1Z0m7NnRthMvgIg-YS3o7Ag/s400/informed+consent.jpg" width="400" /></a></div>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">If my
tumors stay stable or shrink, I’ll stay on Cabozantinib.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">If they continue to progress, I’ll get out of
this clinical trial and try something else.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">
</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">I’m not sure if the “something else” will be Afinitor off label or
another type of angiogenesis clinical trial.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">
</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">I’ve been taking Cabozantinib for 2 days now and the only side effects I
am feeling are fatigue and a weird metallic taste in my mouth.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">The clinical trial consent form listed 125 possible
side effects!</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">That was quite
daunting.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">So far so good, I hope it
stays that way and works to stabilize or shrink my tumors.</span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com6tag:blogger.com,1999:blog-6718169399482231724.post-7630973616752587762015-05-25T14:24:00.000-04:002015-05-27T22:14:02.374-04:00Tumor Progression<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">It has finally
happened to me - the dreaded news of cancer progression. After 4+ years on Sandostatin LAR and
debulking surgery my remaining tumors have started to grow and progress. The good news is there are no new visible tumors. Things were stable until this March when my
MRI showed tumor progression in my liver and one of my lymph nodes. We increased my dose of Sandostatin LAR from
20 mg to 30 mg in March, hoping that might slow down any further progression. My doctor wants to do another MRI in July to
see if the tumors are still progressing.
In July, if the tumors are stable we’ll just continue with the 30 mg Sandostatin
LAR. </span></span><span style="background-color: white; color: #222222; font-family: Arial, sans-serif; font-size: 12pt; line-height: 13.85pt;">Since there are no
approved drugs for mid-gut NET patients that have progressed on Sandostatin LAR,
My doctor mentioned some clinical trials that I might be well suited for that
are going on at Dana Farber as follows:</span><br />
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
</div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1) Immunotherapy Phase 1B
trial of MK-3475 in patients with advanced solid tumors<o:p></o:p></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">2) Angiogenesis
inhibitors (new form of chemotherapy) – there are a few choices for me in this
category<o:p></o:p></span></div>
</div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">The immunotherapy
trial originally sounded interesting.
MK-3475 is the immunotherapy drug that has been used in advanced
melanoma patients that has put some of them into remission. It works by targeting a protein called PD-L1
that allows the cancer cells to live and multiply without disturbance from the
immune system. MK-3475 is a drug that
blocks the PD-L1 protein so that your own immune system can attack the
tumor. Basically, if my tumor tested
positive for PD-L1 then I would be eligible to try this clinical trial to see
if the drug would work for my NETs. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Unfortunately, my
tumor test was not positive and from what I understand, none of the NET tumor
samples tested positive. I guess it
means that this particular pathway to immunotherapy does not work for NETs and
from what I’ve heard, most other gastrointestinal cancers. So if the tumors progress further, it’s on to
angiogenesis inhibitors for me.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #3c3c3c; font-family: Arial, sans-serif; font-size: 12pt;">Angiogenesis inhibitors have dissimilar side
effects from most conventional chemotherapy medications because they work very
differently. Rather than killing healthy cells along with cancer cells, as many
chemotherapy drugs do, angiogenesis inhibitors only prevent new blood vessels
from forming.<span class="apple-converted-space"> </span></span><span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">At this point, there
are no FDA approved angiogenesis inhibitors for mid-gut NETS. For pancreatic NETs, Sunitinib (Sutent) and
Everolmus (Afinitor) are approved. The
clinical trials that my doctor presented to me are for two drugs as follows:<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<br />
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1) Cabozantinib: This is a phase 2 trial of a drug that is approved for
thyroid cancer. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">2) Aflibercept: This is also a phase 2 trial of a drug that is approved
for colorectal cancer. <o:p></o:p></span></div>
</div>
<div class="MsoListParagraphCxSpLast" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in; mso-add-space: auto;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Both these drugs, like
all cancer drugs, have multiple side effects associated with them. All things being equal (and I don’t know if
they are), I’d take the Cabozantinib because it is available in pill form
rather than infusion. Neither of these
clinical trials is randomized, meaning that there is no placebo arm so if I do
one of them, I will definitely be getting the real drug.</span><br />
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiBchyvLH028d5ov82KHZ7k6RDpZfRdiir59_VJnhR_Rr9Z3yNzMxX93ym0LT0bqnL4MS0gs5pnZ_oHFihHRaGXzBSf1CN-jui831YbjweaGVRLoJ6lDfwAtXmkkUOiu4tn5OhxuXpTak/s1600/clinical+trials.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiBchyvLH028d5ov82KHZ7k6RDpZfRdiir59_VJnhR_Rr9Z3yNzMxX93ym0LT0bqnL4MS0gs5pnZ_oHFihHRaGXzBSf1CN-jui831YbjweaGVRLoJ6lDfwAtXmkkUOiu4tn5OhxuXpTak/s320/clinical+trials.JPG" width="284" /></span></a></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">My issue with
angiogenesis inhibitors is that they seem to work better for pancreatic NETs
than for mid-gut NETs. My feeling is
based on some articles I have read and the fact that they are only FDA approved
for pancreatic NETs. My doctor generally
agrees with me but believes that the inhibitors may still work for mid-guts,
just not as well as they do for pancreatic NETs. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">She also suggested taking
Afinitor on an off label basis, meaning that it is not approved for my specific
condition. If I took Afinitor, at least
I would not be subject to the rigorous rules of a clinical trial. Novartis released information last week about a phase III trial called Radiant-4 that showed that Afinitor met the trial goals for gastrointestinal and lung NETs. This study might be enough for the FDA to approve Afinitor for other NET types than pancreatic.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I asked her if we
should consider peptide receptor radionuclide therapy (PRRT). She said that this could be a possibility at
a later stage. She also doesn't think any liver specific treatment makes sense at this point since I have low liver involvement and tumors outside my liver. At this point my tumor
load is light and I don’t have too much carcinoid syndrome. The angiogenesis
inhibitors make sense to see if that helps slow progression. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I went to a patient
conference where Dr. O’Dorisio at the University of Iowa passed out a treatment
chart that showed the different treatments available for NETs and their average
time to progression (TTP). If one looks
at the treatment chart, the angiogenesis inhibitors have an average time to
progression of 7 months. That seems like
a pretty short time to me but I know the TTP can be much longer for some patients. My doctor
thinks that there may be additional PRRT trials available in the US in the next year if necessary for my case. It may make sense to partake in that
treatment. I could also go to Europe for
PRRT where they are much farther along in the development of this therapy. I have some time to think about this as I
wait for my disease to progress. Hopefully
the progression will be slow.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">The link to Dr. O’Dorisio’s
chart is below:<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><a href="https://norcalcarcinet.org/files?download=66:flowchart-for-treatment-of-nets-o-dorisio" target="_blank"><span style="background-attachment: initial; background-clip: initial; background-color: #f4f5f7; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #112233; font-family: Helvetica, sans-serif; font-size: 10.5pt;">norcalcarcinet.org/files?download=66:flowchart-for-treatment-of-nets-o-dorisio</span></a><o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 13.85pt; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
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<br /></div>
</div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com6tag:blogger.com,1999:blog-6718169399482231724.post-62334298160082997042015-05-09T14:31:00.001-04:002015-05-09T21:59:34.757-04:00Overkill<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-weight: bold;">This week’s New Yorker magazine
has another great article called “Overkill” by one of my favorite medical
writers, Atul Gawande. It’s about how
new medical technologies and partnerships between doctors and health care
systems have combined to produce excessive testing and scanning. These often render no
value except to find abnormalities that do not need to be treated because they
will never cause harm. He goes into some
potential solutions as well. It is a
comprehensive but enlightening article. Enjoy!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-weight: bold;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-weight: bold;">Below are some excerpts as well
as the link to the article. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-weight: bold;"><br /></span></div>
<div class="MsoNormal">
<b><i><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">An avalanche of unnecessary medical care is
harming patients physically and financially. What can we do about it?<o:p></o:p></span></i></b></div>
<div class="MsoNormal">
<b><i><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></i></b></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8r0J5xEEumc6Lsy1O58mytEDslLIa-crydC-gPhcLryAltRb_C8DpqV1Ot6go6pa7HWxQCSCqmz32C52k-hCFZMMJNsCW3AahE_acJ6ZvH1U7gCtbdgtIGSNm6xtkhaR8RhkU43b94Eg/s1600/overtreatament+cartoon.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="137" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8r0J5xEEumc6Lsy1O58mytEDslLIa-crydC-gPhcLryAltRb_C8DpqV1Ot6go6pa7HWxQCSCqmz32C52k-hCFZMMJNsCW3AahE_acJ6ZvH1U7gCtbdgtIGSNm6xtkhaR8RhkU43b94Eg/s320/overtreatament+cartoon.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Stuart Bradford in The New York Times</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">“Low value care is defined as </span><span style="background: white; font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">one of twenty-six tests or treatments that
scientific and professional organizations have consistently determined to have
no benefit or to be outright harmful.<span class="apple-converted-space"> </span></span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span><span style="background: white; font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">In just a
single year, the researchers reported, twenty-five to forty-two per cent of
Medicare patients received at least one of the twenty-six useless tests and
treatments.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">”</span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-bidi-font-weight: bold;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">“The virtuous patient is up against long odds, however. One
major problem is what economists call information asymmetry. In 1963, Kenneth
Arrow, who went on to win the Nobel Prize in Economics, demonstrated the severe
disadvantages that buyers have when they know less about a good than the seller
does. His prime example was health care. Doctors generally know more about the
value of a given medical treatment than patients, who have little ability to
determine the quality of the advice they are getting. Doctors, therefore, are
in a powerful position. We can recommend care of little or no value because it
enhances our incomes, because it’s our habit, or because we genuinely but
incorrectly believe in it, and patients will tend to follow our
recommendations.”<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">“Overtesting has also created a new, unanticipated problem:
overdiagnosis. This isn’t misdiagnosis—the erroneous diagnosis of a disease.
This is the correct diagnosis of a disease that is never going to bother you in
your lifetime.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">“H. Gilbert Welch, a Dartmouth Medical School professor, is
an expert on overdiagnosis, and in his excellent new book, “Less Medicine, More
Health,” he explains the phenomenon this way: 'we’ve assumed, he says, that
cancers are all like rabbits that you want to catch before they escape the
barnyard pen. But some are more like birds—the most aggressive cancers have
already taken flight before you can discover them, which is why some people
still die from cancer, despite early detection. And lots are more like turtles.
They aren’t going anywhere. Removing them won’t make any difference'.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">“We’ve learned these lessons the hard way. Over the past
two decades, we’ve tripled the number of thyroid cancers we detect and remove
in the United States, but we haven’t reduced the death rate at all. In South
Korea, widespread ultrasound screening has led to a fifteen-fold increase in
detection of small thyroid cancers. Thyroid cancer is now the No. 1 cancer
diagnosed and treated in that country. But, as Welch points out, the death rate
hasn’t dropped one iota there, either. (Meanwhile, the number of people with
permanent complications from thyroid surgery has skyrocketed.) It’s all
over-diagnosis. We’re just catching turtles.”<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<a href="https://www.blogger.com/null" name="/6"></a><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">“Every cancer has a different ratio of
rabbits, turtles, and birds, which makes the story enormously complicated. A
recent review concludes that, depending on the organ involved, anywhere from
fifteen to seventy-five per cent of cancers found are indolent
tumors—turtles—that have stopped growing or are growing too slowly to be
life-threatening.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">“We now have a vast and costly health-care industry devoted
to finding and responding to turtles. Our ever more sensitive technologies turn
up more and more abnormalities—cancers, clogged arteries, damaged-looking knees
and backs—that aren’t actually causing problems and never will. And then we
doctors try to fix them, even though the result is often more harm than good.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><a href="https://www.blogger.com/goog_992289325"><br /></a></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><a href="http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande">http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande</a></span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com0tag:blogger.com,1999:blog-6718169399482231724.post-89033539582168166302015-03-30T10:54:00.000-04:002015-03-30T13:56:11.826-04:00Black Raspberry Powder<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">Since my surgery in 2013, I
have had problems with bowel movements – everything from frequency size, color,
timing and consistency. </span></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">Prior to surgery, I had no bowel
issues, basically one bowel movement a day every day. My issues post-surgery seem to derive from having
a shorter small intestine and not carcinoid syndrome, which causes diarrhea in
a lot of people. My doctor has had
several suggestions over time such as eating more soluble fiber, CREON (a
pancreatic enzyme to help digestion), taking benefiber daily and Imodium as
needed. Some of these helped marginally
but my bowels never returned close to “normal” like they were before
surgery.</span></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">Over the years I had heard
about people using black raspberry powder (BRP) for relief of diarrhea due to
carcinoid syndrome. In my opinion, Lucy
Wiley, another blogger, is the expert on BRP. </span></span><span style="font-family: Arial, Helvetica, sans-serif;">You can find links to her blog describing how to use it and its benefits
here:</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;"><br /></span></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; line-height: 107%;"><a href="http://lucysnoidblog.blogspot.com/2011/12/black-raspberry-powder-video-thanks-to.html?q=brp">http://lucysnoidblog.blogspot.com/2011/12/black-raspberry-powder-video-thanks-to.html?q=brp</a></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; line-height: 107%;"><a href="http://lucysnoidblog.blogspot.com/2012/01/brp-diary-what-i-learned-today-just.html?q=brp">http://lucysnoidblog.blogspot.com/2012/01/brp-diary-what-i-learned-today-just.html?q=brp</a></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; line-height: 107%;"><a href="http://lucysnoidblog.blogspot.com/2012/02/extract-black-raspberry-goes-portable.html?q=brp">http://lucysnoidblog.blogspot.com/2012/02/extract-black-raspberry-goes-portable.html?q=brp</a></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; line-height: 107%;"><a href="http://lucysnoidblog.blogspot.com/2012/02/extract-black-raspberry-goes-portable.html?q=brp"><br /></a></span></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">Prior to reading the carcinoid
message boards I had never heard of a black raspberry much less black raspberry
powder. BRP is a powder made from
dehydrated black raspberries. Dr.
Woltering at Louisiana State University is a strong proponent of BRP and believes
that it inhibits tumor angiogenesis.<span class="apple-converted-space"> </span>Tumor
angiogenesis is the sprouting of new blood vessels that enable tumors to grow. There has been a lot of research done on BRP,
mostly in labs and on mice, but no human clinical trials that I know of. Dr. Woltering’s paper on BRP and its angiogenesis
properties can be found here:</span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;"><br /></span></span><span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.ochsner.org/content/misc_files/black_raspberry_paper.pdf"><span style="background: white; line-height: 107%;">http://www.ochsner.org/content/misc_files/black_raspberry_paper.pdf</span></a></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.ochsner.org/content/misc_files/black_raspberry_paper.pdf"><span style="background: white; line-height: 107%;"><br /></span></a></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">After years of hearing about
BRP and its benefits, I decided to try it myself in late February. I looked into the suppliers of BRP and found
Berrihealth (<a href="http://www.berrihealth.com/">www.berrihealth.com</a>) . Lucy Wiley is also using
this supplier for the BRP. The only other source I have located is Nutri-Fruit
that can be bought here: </span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;"><br /></span></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;"><a href="http://www.vitacost.com/nutri-fruit-powder-black-raspberry-5-oz">http://www.vitacost.com/nutri-fruit-powder-black-raspberry-5-oz</a></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;"><a href="http://www.vitacost.com/nutri-fruit-powder-black-raspberry-5-oz"><br /></a></span></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">Dr. Woltering suggests the
following protocol:</span><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">1 gram of BRP per kilogram
of body weight. </span><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">1 quart of lukewarm water. </span><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">Mix in the BRP and water. Stir and refrigerate overnight. </span><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">The next morning, put the
liquid through a strainer to eliminate the residue and seeds. </span><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; line-height: 107%;">Drink the quart of BRP
throughout the day until finished. </span></span><span style="font-family: Arial, Helvetica, sans-serif;">I also follow Lucy Wiley’s
very good suggestion of storing the BRP mixture in two Snapple bottles. </span><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwt4gpDCZ9CPy6o8TbFIVq1M6FlPEQpyr2F4e2Qdlqtg4AJocWLXuCIQcM9_dfEU5puB9uEOu5mGoymVwlWilSTSLABVSxbITvoJfIq0aw6l8nigP6zITdmTGVZvmGNNJjKd5Np9SiUA8/s1600/snapple+black+rasperry.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwt4gpDCZ9CPy6o8TbFIVq1M6FlPEQpyr2F4e2Qdlqtg4AJocWLXuCIQcM9_dfEU5puB9uEOu5mGoymVwlWilSTSLABVSxbITvoJfIq0aw6l8nigP6zITdmTGVZvmGNNJjKd5Np9SiUA8/s1600/snapple+black+rasperry.jpg" height="200" width="200" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Thanks to Lucy for this idea</span></td></tr>
</tbody></table>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;">In order to follow this
protocol daily, one needs a lot of BRP.
The best way to get a large quantity of BRP from Berrihealth is to go on
their website and contact them by email or phone. You must notify them you are a NET
patient to order the BRP in bulk. </span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;">The contact information is here:</span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;"><br /></span></span><span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.berrihealth.com/community/contact"><span style="background: white; line-height: 107%;">http://www.berrihealth.com/community/contact</span></a></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.berrihealth.com/community/contact"><span style="background: white; line-height: 107%;"><br /></span></a></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;">They sell a 1,500 gram
3-pack of BRP for a substantial discount per gram. Depending on
how much you weigh and if you are following the higher dose protocol above, the
cost could be around $8 a day. When you
buy a bulk package from Berrihealth, 5% of the proceeds go to carcinoid cancer research. Here is a picture of one of the BRP bags:</span></span><br />
<span style="color: #333333; font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 17.1200008392334px;"><br /></span></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjVsidgJHnl7srSHXLgZRg1ZzgDQn5Wi2jzGC3spHBBNCkTjNfQXEr7ukJDuLl0dIpsybceSpIaU1VGX0XxVnRFbnsQBNXD6g4d3ObBxPTbNJizcAwNsX9BF9Kf6j-Ik_yvmSDSnkAXUw/s1600/black+raspberry+powder.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjVsidgJHnl7srSHXLgZRg1ZzgDQn5Wi2jzGC3spHBBNCkTjNfQXEr7ukJDuLl0dIpsybceSpIaU1VGX0XxVnRFbnsQBNXD6g4d3ObBxPTbNJizcAwNsX9BF9Kf6j-Ik_yvmSDSnkAXUw/s1600/black+raspberry+powder.jpg" height="200" width="200" /></span></a><span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif; line-height: 107%;">The dosing for Dr. Woltering’s
protocol is as follows:</span><br />
<span style="color: #333333; font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 17.1200008392334px;"><br /></span></span>
<br />
<table border="1" cellpadding="0" cellspacing="0" class="MsoTableGrid" style="border-collapse: collapse; border: none; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 0in 5.4pt 0in 5.4pt; mso-yfti-tbllook: 1184;">
<tbody>
<tr>
<td style="border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 148.2pt;" valign="top" width="198"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<b><span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">Body Weight in Pounds = <o:p></o:p></span></b></div>
</td>
<td style="border-left: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 166.55pt;" valign="top" width="222"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<b><span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">Body Weight in Kilograms (kg)<o:p></o:p></span></b></div>
</td>
<td style="border-left: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 152.75pt;" valign="top" width="204"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<b><span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">BRP in grams (gr) daily<o:p></o:p></span></b></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 148.2pt;" valign="top" width="198"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">125<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 166.55pt;" valign="top" width="222"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">57<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 152.75pt;" valign="top" width="204"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">57<o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 148.2pt;" valign="top" width="198"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">150<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 166.55pt;" valign="top" width="222"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">68<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 152.75pt;" valign="top" width="204"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">68<o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 148.2pt;" valign="top" width="198"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">175<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 166.55pt;" valign="top" width="222"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">80<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 152.75pt;" valign="top" width="204"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">80<o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 148.2pt;" valign="top" width="198"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">200<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 166.55pt;" valign="top" width="222"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">91<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 152.75pt;" valign="top" width="204"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">91<o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 148.2pt;" valign="top" width="198"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">225<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 166.55pt;" valign="top" width="222"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">102<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 152.75pt;" valign="top" width="204"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">102<o:p></o:p></span></div>
</td>
</tr>
</tbody></table>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;">As you can see above, the
dose is quite high for this protocol.
The bag of freeze dried BRP says a serving size of 2 teaspoons is 8
grams. I don’t have a gram scale so I
translated the doses into tablespoons and that is how I measure out the BRP. A tablespoon
is equal to 12 grams.</span></span><br />
<span style="color: #333333; font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 17.1200008392334px;"><br /></span></span>
<br />
<table border="1" cellpadding="0" cellspacing="0" class="MsoTableGrid" style="border-collapse: collapse; border: none; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 0in 5.4pt 0in 5.4pt; mso-yfti-tbllook: 1184; width: 619px;">
<tbody>
<tr style="height: 12.95pt; mso-yfti-firstrow: yes; mso-yfti-irow: 0;">
<td style="border: solid windowtext 1.0pt; height: 12.95pt; mso-border-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.5pt;" valign="top" width="199"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<b><span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">Body Weight in Pounds<o:p></o:p></span></b></div>
</td>
<td style="border-left: none; border: solid windowtext 1.0pt; height: 12.95pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 165.3pt;" valign="top" width="220"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<b><span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">BRP in grams (gr) daily<o:p></o:p></span></b></div>
</td>
<td style="border-left: none; border: solid windowtext 1.0pt; height: 12.95pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.8pt;" valign="top" width="200"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<b><span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">Tablespoons<o:p></o:p></span></b></div>
</td>
</tr>
<tr style="height: 12.95pt; mso-yfti-irow: 1;">
<td style="border-top: none; border: solid windowtext 1.0pt; height: 12.95pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.5pt;" valign="top" width="199"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">125<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; height: 12.95pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 165.3pt;" valign="top" width="220"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">57<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; height: 12.95pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.8pt;" valign="top" width="200"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">4.8<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 12.1pt; mso-yfti-irow: 2;">
<td style="border-top: none; border: solid windowtext 1.0pt; height: 12.1pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.5pt;" valign="top" width="199"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">150<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; height: 12.1pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 165.3pt;" valign="top" width="220"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">68<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; height: 12.1pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.8pt;" valign="top" width="200"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">5.7<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 10.6pt; mso-yfti-irow: 3;">
<td style="border-top: none; border: solid windowtext 1.0pt; height: 10.6pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.5pt;" valign="top" width="199"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">175<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; height: 10.6pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 165.3pt;" valign="top" width="220"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">80<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; height: 10.6pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.8pt;" valign="top" width="200"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">6.7<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 12.95pt; mso-yfti-irow: 4;">
<td style="border-top: none; border: solid windowtext 1.0pt; height: 12.95pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.5pt;" valign="top" width="199"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">200<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; height: 12.95pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 165.3pt;" valign="top" width="220"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">91<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; height: 12.95pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.8pt;" valign="top" width="200"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">7.6<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 12.1pt; mso-yfti-irow: 5; mso-yfti-lastrow: yes;">
<td style="border-top: none; border: solid windowtext 1.0pt; height: 12.1pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.5pt;" valign="top" width="199"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">225<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; height: 12.1pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 165.3pt;" valign="top" width="220"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">102<o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; height: 12.1pt; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 149.8pt;" valign="top" width="200"><div align="center" class="MsoNormal" style="margin-bottom: 0pt; text-align: center;">
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif;">8.5<o:p></o:p></span></div>
</td>
</tr>
</tbody></table>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;">When I received the BRP, I
started using 2 tablespoons (24 grams) just to see how my body would react. I weigh about 150 pounds, so the Woltering
protocol would have me using close to 6 tablespoons daily. I noticed a positive change in my bowel
movements within 24 hours and it was even better after a few days. I was altering between 2 and 3 tablespoons
per day in the quart of water. My bowel movements were much less frequent (1-2x
per day), much less voluminous and the color was a normal brown instead of
yellowish. I was amazed at the
difference! </span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;"><br /></span></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;">The BRP has a mild taste of
berries but it is quite thick when mixed and steeped overnight. I have been adding flavored
club sodas, cranberry juice, herbal teas and diet ginger ale to enhance the taste and make it less dense. </span></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihnJNUEAhtPZW_IeJypDC-2YzvM2VATt8YWZmnXRKSefqwB_PJeTrfva0B1HAG0omEeuosS8ZlT9JYLDKbv0A0FcTjH1Ra_FUJu5ZrRA15g4PpV1vD3hhx6kCRPkbjFuUVCg7AUk1Uc7Q/s1600/black+raspberry+mixers.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihnJNUEAhtPZW_IeJypDC-2YzvM2VATt8YWZmnXRKSefqwB_PJeTrfva0B1HAG0omEeuosS8ZlT9JYLDKbv0A0FcTjH1Ra_FUJu5ZrRA15g4PpV1vD3hhx6kCRPkbjFuUVCg7AUk1Uc7Q/s1600/black+raspberry+mixers.jpg" height="320" width="320" /></span></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white;">My bowels were doing quite well but I was having trouble
drinking as much as 4 cups a day of the mixture, especially when I was mixing
in the tea, seltzer or other liquids. I
lowered the water to 3 cups and used 1 tablespoon per cup of water or 36 grams
a day. At 36 grams a day, the cost is
about $5 a day, rather than $8 or more for the higher dose.</span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white;"><br /></span></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white;">So, after about a month of playing with BRP and dosing, I’ve
had better bowel behavior. The downside is that I have added a few pounds to my
weight. Better bowel behavior was my
primary goal and BRP has exceeded my expectations. At this point, I’ll stick to the dose of about
36 grams a day mixed with 3 cups of water, hoping that it can also help with
slowing my tumor growth. </span></span><br />
<h4>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white;"><br /></span></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white;">I would recommend you try BRP for any of the above described
bowel issues. It could make a big
difference in your quality of life. You might even live longer!</span></span></h4>
<span style="background: white; color: #333333; font-family: Arial, Helvetica, sans-serif; line-height: 107%;"></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; line-height: 107%;"></span></span><br />
<span style="color: #333333; font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 17.12px;"></span></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background: white; color: #333333; font-family: "Arial",sans-serif; font-size: 10.5pt; line-height: 107%; mso-no-proof: yes;"><!--[if gte vml 1]><v:shape
id="Picture_x0020_2" o:spid="_x0000_i1026" type="#_x0000_t75" style='width:302.25pt;
height:468pt;rotation:90;visibility:visible;mso-wrap-style:square'>
<v:imagedata src="file:///C:\Users\Neil\AppData\Local\Temp\msohtmlclip1\01\clip_image003.jpg"
o:title=""/>
</v:shape><![endif]--><!--[if !vml]--><!--[endif]--></span><span style="background: white; color: #333333; line-height: 107%;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com10tag:blogger.com,1999:blog-6718169399482231724.post-90216140221406147462015-03-02T07:43:00.001-05:002015-03-02T13:01:05.388-05:00Big Apple NETs<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">The New York Noids patient support group
has officially changed its name to Big Apple NETs. We’ve done that as part of the effort in the
neuroendocrine cancer community to stop using carcinoid or Noids in our case
and to switch the terminology to neuroendocrine tumors (NETs). Emily Zuckerberg is the leader of the group
and spouse of a NET patient. She has been working diligently to get this group
up and running since 2013. We meet on
the last Sunday of each month. We have a
new website at <a href="http://bigapplenets.org/">bigapplenets.org</a> that was designed by Nancy Stone, one of our
members and a lung NET patient. The
website is full of information on our group’s and other NET events, news in the NET
community, medical centers that treat NETs in the Northeast and resources for
NET patients. Nancy did a great job of
learning html and putting this together!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">Big Apple NETs is also hosting a lunch
with some of the doctors from Mount Sinai on April 12<sup>th</sup>. This is a unique opportunity to share
experiences with others who have similar concerns and to hear from expert
physicians in an informal setting on issues ranging from NET cancer treatments
and surgery to follow-up testing and new developments. We are hoping to host other events in the
future.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBR5edJOTPVxOgfIiRlzI_ZQ0IYgAw63n_pe26yQYLYtcxXbdTFlnNZeDwC3uUQNjXCDaRIHsb5Nb2cGHf7AOq1ptmsCpuldA3IGHVh3lsMJk0yWUgyXrSnUlRnZcr67kCnwSppjWqQA4/s1600/Big+apple+nets+logo.png" imageanchor="1"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBR5edJOTPVxOgfIiRlzI_ZQ0IYgAw63n_pe26yQYLYtcxXbdTFlnNZeDwC3uUQNjXCDaRIHsb5Nb2cGHf7AOq1ptmsCpuldA3IGHVh3lsMJk0yWUgyXrSnUlRnZcr67kCnwSppjWqQA4/s1600/Big+apple+nets+logo.png" height="210" width="400" /></a></div>
<br />
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">Please take a look at our new website and
join us for a support group meeting or event. <o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">I love the zebra apple!</span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com3tag:blogger.com,1999:blog-6718169399482231724.post-5957761372614243042015-02-11T08:52:00.000-05:002015-02-11T14:18:53.019-05:00John Oliver on Marketing to Doctors<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">I think John Oliver is one of the funniest
guys on TV. He has a show called Last
Week Tonight and his latest episode was a hilarious and cynical take on big pharma and
marketing to doctors. You can watch it
here – it is about 17 minutes long:</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><a href="https://www.youtube.com/watch?v=YQZ2UeOTO3I">https://www.youtube.com/watch?v=YQZ2UeOTO3I</a></span><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">I covered this subject a few years ago
– you can see that post </span><a href="http://bethsadventureswithcancer.blogspot.com/2012/06/normal-0-microsoftinternetexplorer4.html" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;" target="_blank">here</a><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">.</span></div>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">I still think the ProPublica
website (</span><a href="http://projects.propublica.org/docdollars/" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">http://projects.propublica.org/docdollars/</a><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">)
is a better way to see how much money your doctor is getting from big pharma than
the openpayment site that is part of the Affordable Care Act (</span><a href="https://openpaymentsdata.cms.gov/" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">https://openpaymentsdata.cms.gov</a><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">).</span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com0tag:blogger.com,1999:blog-6718169399482231724.post-6521042349179366892015-01-27T12:00:00.002-05:002015-01-28T22:57:54.615-05:00Words That Obscure<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">I love Susan Gubar’s column Living
with Cancer in <i>The New York Times</i>. Her most recent column is called "Words That Obscure" and it is about some of the terminology used in discussing cancer
care. Some of the points in this column
concern the following:</span></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
</div>
<blockquote class="tr_bq">
<span style="line-height: 107%; text-indent: -0.25in;"><span style="font-stretch: normal; line-height: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">1.</span></span><span style="font-family: 'Times New Roman'; font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">“Medical lexicons that appear to blame the people receiving
treatment.” Her example was for a breast
cancer drug but I once had a doctor tell me that he would change my treatment
after I “failed Sandostatin”. Same concept,
different drug. Another quote from her
column was “In the topsy-turvy world of cancer, anything ‘positive’ or ‘advancing’
spells trouble. Yet a brain labeled ‘unremarkable’
after an MRI hardly conveys the good news it contains."</span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">2. Ter</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">ms and drugs that contain horrible and hard to pronounce
words. These include cachexia and ascites as well as double named chemotherapy drugs
such as sandostatin/octreotide, affinitor/evorolimus or cap-tem (capecitabine-temozolomide). She asks “Don’t we need a rubric for the
growing population that must turn down the unpronounceable drugs because they
are unaffordable?"</span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">3. T</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">erms created by patients such as “scanxiety” and “chemoflage”. There is</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;"> a hilarious discussion of
acronyms created by patients such as:</span></blockquote>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol; mso-no-proof: yes;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">BBP (bald barfing person)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol; mso-no-proof: yes;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">PSHIFTY (person still hanging
in fine thank you)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol; mso-no-proof: yes;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">QIBIFA (quite ill but
inexplicably fat anyway) and finally, one that was in the comments, not the
column:<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol; mso-no-proof: yes;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">PhD (patient hasn’t died)</span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;"><br /></span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;">The link to the article is below:</span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%; text-indent: -0.25in;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;"><a href="http://well.blogs.nytimes.com/2015/01/22/living-with-cancer-coming-to-terms/?ref=health&_r=0">http://well.blogs.nytimes.com/2015/01/22/living-with-cancer-coming-to-terms/?ref=health&_r=0</a><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">That’s it for today when the "non-historic" blizzard came to New York City!</span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com4tag:blogger.com,1999:blog-6718169399482231724.post-64041043940548117442014-12-14T21:06:00.001-05:002014-12-16T17:11:57.742-05:00My New Life<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">It has been 6 months since I stopped working. On the job, I felt like I had no time to
myself. I was always playing “beat the clock” and losing the struggle with my
schedule. Until I was diagnosed with cancer, I did not really care that I never
seemed to have time to think about things and meditate on life. Now that I have settled into this new
lifestyle, I feel much more at peace with myself and less stressed out. My friends and family thought that I would
not deal with retirement well and that I would “be going crazy”. This turned out not to be the case at
all. I was concerned that I would focus
too much on my cancer and symptoms. This
did not happen either. Don’t get me
wrong; I still have major gastrointestinal, fatigue and nutrition absorption
issues but they are becoming more like my new normal. I've gotten used to
them. <o:p></o:p></span><br />
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">Also, now that I am not working, I am getting enough sleep
and I think that is making me feel better.
I am not always running around worrying about what I have to do
next. I am eating healthier foods and
more home cooked and smaller meals. This helps with some of the digestive
issues. <o:p></o:p></span><br />
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">I go out with friends sometimes when I'm feeling up to it. I've been to movies, plays and day trips
outside of the city. I've started doing
a little bit of volunteer work as well.
Some days though, I don’t do much except read, putter around the house
and maybe pick up some groceries. I just don’t have the energy level that I had
prior to my surgery. It’s amazing how
fast the day can go by even when one is not busy in the conventional working
sense. <o:p></o:p></span><br />
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">I also had thought that I would be spending more time on my blog
and on the cancer message boards but I do not really dwell on my cancer. I
haven’t been spending much time on anything related to it. I am currently in maintenance mode with
monthly Sandostatin shots and regular scans. Other than that, not much is going
on in my cancer life. <o:p></o:p></span><br />
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">All in all, I am living in the moment and trying to enjoy life
to the fullest. It’s nice to
finally get some time to myself! I read
a great book called <u>How to Retire Happy, Wild and Free – Retirement wisdom
that you won’t get from your financial advisor</u> by Ernie J. Zelinski. Most retirement books focus on financial
planning but this one focuses more on how to stay happy and fulfilled and using
your time well. One of the best ideas in this book is the “Get a Life
Tree”. It’s a chart of activities
categorized by:</span></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<ul>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> Activities
that turn me on now</span></li>
<li><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: Arial;"><span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal;"> </span></span><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;">Activities
that turned me on in the past</span></li>
<li><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: Arial;"><span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal;"> </span></span><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;">New
activities I have thought of doing</span></li>
<li><span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-fareast-font-family: Arial;"><span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal;"> </span></span><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;">Activities
that will get me physically fit</span></li>
</ul>
</div>
<div class="MsoNormal">
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">An example of a “Get a Life Tree” is below:<o:p></o:p></span><br />
<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSkWHXoHLGkjH8kjPR83BzwZhOiaYJVJ60QlRJRhMYqmPij40-pqhtnaqPAGA63Sj3PtpjjO_Mxvub791zH9uOKMKrt0xyMGT-1Eg5KOIgz5PX9Xq18A_i84oiFVVetIuMdqnoUpHDuxo/s1600/get+a+life+tree.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSkWHXoHLGkjH8kjPR83BzwZhOiaYJVJ60QlRJRhMYqmPij40-pqhtnaqPAGA63Sj3PtpjjO_Mxvub791zH9uOKMKrt0xyMGT-1Eg5KOIgz5PX9Xq18A_i84oiFVVetIuMdqnoUpHDuxo/s1600/get+a+life+tree.jpg" /></a></div>
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<span style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%;">Enjoy the holidays and here’s to a happy and healthy New Year
to all!<o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com1tag:blogger.com,1999:blog-6718169399482231724.post-1439944092465837322014-10-25T20:11:00.001-04:002014-10-25T20:12:20.297-04:00I Couldn't Resist!<span style="font-family: Arial, Helvetica, sans-serif;">This made me laugh!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-215fEB9yI9o6Ab-ghnKRuMIwrN-bC0FoFfgxdYJlZ_K_q97nVhxgR0vO71Leb6AYViSwA5ViMGGYXQoayyhfXzuhkVl-_YhC-QWjaS8XT1TZQgii5ubYUn1o2mfvnslpn1bSAgJg8cM/s1600/barking.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-215fEB9yI9o6Ab-ghnKRuMIwrN-bC0FoFfgxdYJlZ_K_q97nVhxgR0vO71Leb6AYViSwA5ViMGGYXQoayyhfXzuhkVl-_YhC-QWjaS8XT1TZQgii5ubYUn1o2mfvnslpn1bSAgJg8cM/s1600/barking.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;">Source: The New Yorker Magazine</td></tr>
</tbody></table>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com2tag:blogger.com,1999:blog-6718169399482231724.post-29730590752504923192014-10-12T23:11:00.000-04:002014-10-16T19:47:50.700-04:00Tumor Markers and Scans<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">A few weeks ago I had a CT scan plus
tests for 5-HIAA and chromogranin A
(CgA). The CT scan measures the visible
tumors and is compared against the prior one to see if there are any
changes. The good news is that my
visible tumors as seen by CT scan are stable.
I will be getting an MRI at the end of the month to see my liver tumors
better. I have some small liver tumors
but all of the specialists I have seen since diagnosis think I have reasonably low liver
involvement. This will be my first MRI
so I guess it will be used as a baseline to see how my liver tumors
progress. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">In terms of my tumor markers, these are
tests that measure the activity or secretion of hormones by the tumors. The CgA marker is a general measure of tumor
activity. The 5-HIAA test is a 24 hour
urine sample that measures the level of serotonin that the tumors are
producing. In most patients with
carcinoid cancer, the levels of CgA and 5-HIAA are elevated. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">Any lab tests (not just tumor markers)
are shown with the result that was measured and a range of what is considered
normal. This is called called the reference range. If you have lab tests over time that are from
different places with different ranges, one can divide the result by the top of
the reference range to see the percentage over or under the range. The CgA
table below shows some of my results from this test since my initial diagnosis
in August, 2010. Before I started
taking Sandostatin, my result was 1,243 when the top of the range was 50. My result was 25 times the top of the normal
range! Once I started Sandostatin LAR,
the results, while still high relative to the range, were much lower, averaging
around 2x the top of the range. Just
after my surgery in September 2013, my CgA level was 43 or half the range; the
following test in January 2014 was at the top of the range. Subsequent tests have been climbing with my
most recent test at 3.38 times the top of the range the highest since just
prior to my surgery. From what I
understand, CgA is a vague diagnostic marker and having this test elevated in
the absence of other symptoms or tumor growth is not enough to take
action. My doctor did not seem too
concerned with this CgA reading, despite the fact that it is rising. <b><o:p></o:p></b></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;"><br /></span></div>
<div align="center">
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; mso-padding-alt: 0in 5.4pt 0in 5.4pt; mso-yfti-tbllook: 1184; width: 428px;">
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<tr style="height: 16.5pt; mso-yfti-firstrow: yes; mso-yfti-irow: 0;">
<td colspan="4" nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 321.0pt;" valign="bottom" width="428"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">CgA<o:p></o:p></span></b></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 1;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Result<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Ref Range<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">% Over/Under Range<o:p></o:p></span></b></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 2;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">8/30/2010<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1243<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><50<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">24.86<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 3;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">8/15/2012<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">585<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><225<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">2.60<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 4;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">2/14/2013<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">236<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><93<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">2.54<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 5;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">4/5/2013<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">182<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1.96<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 6;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">8/9/2013<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">295<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">3.17<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 7;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">10/4/2013<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">43<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">0.46<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 8;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1/15/2014<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">93<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1.00<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 9;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">2/13/2014<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">89<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">0.96<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 10;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">3/14/2014<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">109<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1.17<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 11;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">6/5/2014<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">140<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1.51<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 12;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">7/10/2014<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">138<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1.48<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 13; mso-yfti-lastrow: yes;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">10/1/2014<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="right" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: right;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">314<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<br /></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">3.38<o:p></o:p></span></div>
</td>
</tr>
</tbody></table>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">5-Hydroxyindoleacetic acid (5-HIAA), the
major metabolite of serotonin, is excreted in the urine. This test is more highly specific to
carcinoid tumors. Elevated levels of
serotonin as measured by 5-HIAA are associated with heart valve problems caused
by fibrosis. Fibrosis is defined as an
abnormal condition in which fibrous connective tissue spreads over or replaces
normal smooth muscle or other normal organ tissue. Not too much seems to be understood about the
relationship between serotonin and fibrosis and many people who have high
levels of serotonin do not get fibrosis. There must be some other hormone or process
involved. Nonetheless, reducing the
levels of serotonin, which is a hormone released by carcinoid tumors, is a
major goal of most doctors. Sandostatin
LAR is known to inhibit the release of serotonin. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;">When I was first diagnosed with
carcinoid cancer in 2010, my 5-HIAA was over 4x the high end of the normal
range (see table below). Despite being
on Sandostatin LAR for about 2.5 years prior to my surgery in 2013, my 5-HIAA
levels remained at that level. When I had
my debulking surgery and about 90% of my tumors removed, my 5-HIAA came way
down to near the top of the reference range.
My most recent test shows a slight
increase in 5-HIAA but nowhere near where it was pre-surgery. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%; mso-no-proof: yes;"><br /></span></div>
<div align="center">
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; mso-padding-alt: 0in 5.4pt 0in 5.4pt; mso-yfti-tbllook: 1184; width: 428px;">
<tbody>
<tr style="height: 16.5pt; mso-yfti-firstrow: yes; mso-yfti-irow: 0;">
<td colspan="4" nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 321.0pt;" valign="bottom" width="428"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">5-HIAA<o:p></o:p></span></b></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 1;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"></td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Result<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Ref Range<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">% Over/Under Range<o:p></o:p></span></b></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 2;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">9/8/2010<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">74<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><18<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">4.11<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 3;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">2/15/2013<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">33<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><8<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">4.13<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 4;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1/16/2014<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">7.6<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><8<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">0.95<o:p></o:p></span></div>
</td>
</tr>
<tr style="height: 16.5pt; mso-yfti-irow: 5; mso-yfti-lastrow: yes;">
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 64.15pt;" valign="bottom" width="86"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<b><span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">10/2/2014<o:p></o:p></span></b></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 44.6pt;" valign="bottom" width="59"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">8.2<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 71.05pt;" valign="bottom" width="95"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><8<o:p></o:p></span></div>
</td>
<td nowrap="" style="border-bottom: solid #9BC2E6 1.0pt; border: none; height: 16.5pt; padding: 0in 5.4pt 0in 5.4pt; width: 141.2pt;" valign="bottom" width="188"><div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="color: #44546a; font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1.03<o:p></o:p></span></div>
</td>
</tr>
</tbody></table>
</div>
<div align="center" class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">So what does this all mean? I’m really have no idea. I’m glad my serotonin is closer to normal now
that I’ve had surgery. But since I was not having any signs of heart valve
disease or fibrosis prior to surgery, I’m not sure it really matters. I’m not too sure what to think about the
rising CgA but since my doctor is not worried, I won’t be either. <o:p></o:p></span></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com2tag:blogger.com,1999:blog-6718169399482231724.post-11026018598232776952014-09-24T21:17:00.000-04:002014-09-24T21:17:28.383-04:00Too Young to Die, Too Old to Worry and Why I hope to Die at 75<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">This past week I saw two articles with the above titles
and was intrigued. “Too Young to Die,
Too Old to Worry” was in <i>The New York
Times</i> and the “Why I Hope to Die at 75” was in <i>The Atlantic.</i> <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">They both had similar themes:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">“Once you get older, 80 in the first article, 75 in the
second, perhaps one should spend less time on preventative medicine and more
time enjoying the more pleasurable things in life.” <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">“Doubtless, death is a loss. But here is a simple truth
that many of us seem to resist: living too long is also a loss. It renders many
of us, if not disabled, then faltering and declining, a state that may not be
worse than death but is nonetheless deprived.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">“At older ages, we desire to not to simply pursue life,
but happiness, and that medicine is important, but it’s not the only means to
this happiness.” <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD7RsXOnsTR1iU4WPKlych56gHhronbCT4_bhp1N9F9Jr1z8vgkyrslSZTD0dCTLyNT9YDF6FHYmah34OekvSkVElTDfLNkbyBGABf-EuaIvqmDn18H10DmziRNaHfNsWPKTYAsjdm_r4/s1600/eat+drink+and+be+merry3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD7RsXOnsTR1iU4WPKlych56gHhronbCT4_bhp1N9F9Jr1z8vgkyrslSZTD0dCTLyNT9YDF6FHYmah34OekvSkVElTDfLNkbyBGABf-EuaIvqmDn18H10DmziRNaHfNsWPKTYAsjdm_r4/s1600/eat+drink+and+be+merry3.jpg" height="400" width="298" /></a></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">“Americans seem to be obsessed with exercising, doing
mental puzzles, consuming various juice and protein concoctions, sticking to
strict diets, and popping vitamins and supplements, all in a valiant effort to
cheat death and prolong life as long as possible. I think this manic
desperation to endlessly extend life is misguided and potentially destructive.
For many reasons, 75 is a pretty good age to aim to stop.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">“Since 1960, increases in longevity have been achieved
mainly by extending the lives of people over 60. Rather than saving more young
people, we are stretching out old age. Over the past 50 years, health care
hasn’t slowed the aging process so much as it has slowed the dying process.
And, the contemporary dying process has been elongated.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">Both articles focus on how after certain ages, the benefits
of prevention are not worth the hassles of testing, surgeries and medications.</span><span style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"> </span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 107%;">I agree with the basic premises of these articles and can
only hope to be alive at 75 or 80. The
links to the articles are below:<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/">http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/</a><span class="MsoHyperlink"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="http://www.nytimes.com/2014/09/21/opinion/sunday/too-young-to-die-too-old-to-worry.html">http://www.nytimes.com/2014/09/21/opinion/sunday/too-young-to-die-too-old-to-worry.html</a><o:p></o:p></div>
<br />
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com0tag:blogger.com,1999:blog-6718169399482231724.post-70331759189844874502014-09-14T22:09:00.002-04:002014-09-29T15:34:21.030-04:00Long Time No Update<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;">It’s been a while since I last updated my blog. I guess there is not too much going on in my
cancer life – everything is reasonably stable.
I am scheduled for scans, 5-HIAA and other tests in early October and
I’m hoping I’m still stable. Last month
I marked the 4 year anniversary of my diagnosis. This coming week marks the one year anniversary of
my de-bulking surgery. A few days ago, this
blog reached its 100,000<sup>th</sup> pageview! These are some serious milestones.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW-uOPo3mb-tYglD-FUYVWCvGDnHN5cbZsqfDi9_BbHFAIPElDMHfqC9q14WxH1X8Rq6IDKBjdC48fsOLVu7yMsFSI7swRlkLi7igtma0wB3i7exLTq84xLBn-8RfvIXvLXwmHaGPIyUM/s1600/stool+sample.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW-uOPo3mb-tYglD-FUYVWCvGDnHN5cbZsqfDi9_BbHFAIPElDMHfqC9q14WxH1X8Rq6IDKBjdC48fsOLVu7yMsFSI7swRlkLi7igtma0wB3i7exLTq84xLBn-8RfvIXvLXwmHaGPIyUM/s1600/stool+sample.jpg" height="200" width="193" /></a></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;">I am feeling less stressed out since my retirement a few
months ago. I thought that stopping work
would help my bowel issues tremendously but it has only helped
incrementally. I still need to be near a
restroom and every day is an adventure as to bowel frequency, consistency and
color. I do have some days where I only
have one bowel movement and this makes
me reminisce about my pre-surgery days. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;">My second NETest showed an increase from in my score from 3 to 4. The range of scores is 1-8 and 1-4 is considered
low or “residual disease”. I still have
one test to go in a few months and I hope it remains in the same range.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;">I am doing a better job on eating appropriately now that I am
not working. I don’t digest fat very
well so I take CREON, a pancreatic enzyme 3x a day. My doctor told me that I should eat more
soluble fiber and take metamucil or benefiber daily. Soluble fiber attracts water and forms
a gel, which slows down digestion and can help stop diarrhea. Sources of
soluble fiber include oatmeal, oat cereal, lentils, apples, oranges, pears, oat
bran, strawberries, nuts, flaxseeds, beans, dried peas, blueberries, psyllium,
cucumbers, celery, and carrots. Since I
have been eating more soluble fiber, my bowel movements have improved but are
still not “normal”. I have also been
eating 4 smaller meals a day and trying to eat softer foods. </span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;">Some of the foods that work for me are below:<o:p></o:p></span></div>
<div class="MsoNormal">
</div>
<ul>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt;">eggs (scrambled, soft/hard boiled, omelettes, deviled or egg
salad-with light mayonnaise)</span></li>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt;">roasted turkey or grilled/rotisserie chicken</span></li>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt;">any grilled, baked or broiled fish</span></li>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt;">tuna fish sandwiches made with light mayonnaise - sometimes with reduced fat
cheese for a tuna melt</span></li>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt;">soups that are not cream based - I try to make my own soups
rather than eating canned.</span></li>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt;">creamy peanut butter and jelly/marshmallow fluff/fig butter (pick one)
sandwiches</span></li>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt;">crackers with laughing cow light or other low-fat cheese</span></li>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt;">fat free feta cheese in my omelette or on my (small) salad</span></li>
<li><span style="font-family: Arial, sans-serif; font-size: 12pt;">greek yogurt</span></li>
</ul>
<br />
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;">I stay away from celery, corn, nuts, seeds and popcorn. I
don't intentionally put these into anything I eat. When I make a salad, I chop
it up into small pieces and chew thoroughly.
I’m sure that eating better and more frequently plus the reduction of
stress in my life has helped with the slight improvement in symptoms. I’ve also not had another full bowel
obstruction since my emergency room visit in April. I did have a “bowel kink” or perhaps a
partial obstruction in July but it cleared before I needed to see a doctor or
go to the ER. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;">Finally, I read an interesting article in “The New Yorker”
titled “The Transformation Is
it possible to control cancer without killing it?” It’s about the new treatments that are being
tested and used now. The intent is not to cure cancer, but to keep patients
alive with a higher
quality of life for longer. The link is
below:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;"><br /></span></div>
<br />
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;"><a href="http://www.newyorker.com/magazine/2014/09/15/transformation-3">http://www.newyorker.com/magazine/2014/09/15/transformation-3</a></span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-no-proof: yes;"><br /></span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com2tag:blogger.com,1999:blog-6718169399482231724.post-71271710426193010882014-08-16T22:04:00.002-04:002014-08-25T22:42:08.611-04:00My Husband, Owen McGivern, is Raising Funds for Neuroendocrine Cancer Research<div class="MsoNormal">
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">On
Sunday, September 21, my husband Owen will be raising funds to support the
neuroendocrine tumor program (NET) at Dana Farber Cancer Institute. As one of
more than 8,500 anticipated participants, he’s pledged to raise funds that will
be used to support critical cancer research and innovative care for this rare
cancer at Dana-Farber Cancer Institute. I'm writing to you today to ask for
your support. <br />
<br />
Owen will be on the Caring for Carcinoid/Walking with Jane and Anne Team, <a href="http://www.jimmyfundwalk.org/faf/search/searchTeamPart.asp?ievent=1086390&team=5839056">http://www.jimmyfundwalk.org/faf/search/searchTeamPart.asp?ievent=1086390&team=5839056</a>,
participating as a virtual walker. Harry
Proudfoot is the team leader. He can be
reached at walkingwithjane@gmail.com<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><br /></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;">Please feel free to join
the team if you would like to walk at this event or join as a virtual walker to
raise funds for research and cures. If
you join the team, you will get a team t-shirt.
The design is shown below. </span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgT3e1Ycg2feljDAg1XAyaBTvcn8o4ZqzhV2ZnsMDlR1q-BTU0EzWMg8PUA_GxLYVOOOOtCWJFkSfybW-RieBT8xM8M3CGwmxtTL7rm3QIpAOq2fTXvM8JhfzQJfkK0rxkvQIQsTPijWTU/s1600/2014-marathon-shirt1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgT3e1Ycg2feljDAg1XAyaBTvcn8o4ZqzhV2ZnsMDlR1q-BTU0EzWMg8PUA_GxLYVOOOOtCWJFkSfybW-RieBT8xM8M3CGwmxtTL7rm3QIpAOq2fTXvM8JhfzQJfkK0rxkvQIQsTPijWTU/s1600/2014-marathon-shirt1.jpg" height="320" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Front of Team T-Shirt</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkleJ2Ftc4oyVTHJjatgrv6TfK0xKMOk0bRXKIe5XA9_CcV1MLFuhTEFTRTz9MG_w76VlkeCp5iS2A_EEzAlByvJi6H4VnqTWbMExEx0sZwtLy4-E3ZD3RS4HKLiKtAWDoe5jp-Ap1NWc/s1600/2014-marathon-shirt-2.jpg" height="320" style="margin-left: auto; margin-right: auto;" width="214" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Back of Team T-Shirt</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkleJ2Ftc4oyVTHJjatgrv6TfK0xKMOk0bRXKIe5XA9_CcV1MLFuhTEFTRTz9MG_w76VlkeCp5iS2A_EEzAlByvJi6H4VnqTWbMExEx0sZwtLy4-E3ZD3RS4HKLiKtAWDoe5jp-Ap1NWc/s1600/2014-marathon-shirt-2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;">Please
join Owen in the fight against cancer by considering a contribution of $26.20
or more toward his fundraising efforts.<br />
<br />
It's easy to have an impact on this important and universal cause. You can:<br />
- Make a gift online: Visit the Walk website at <a href="http://www.jimmyfundwalk.org/">www.JimmyFundWalk.org</a> and click
"Give." Search for Owen's name and follow the instructions on his fundraising page to make a gift online, or go to Owen's fundraising page at <strong><span style="background: white; color: #222222;"><a href="http://www.jimmyfundwalk.org/2014/owen_mcgivern" target="_blank"><span style="color: #1155cc; font-weight: normal; mso-bidi-font-weight: bold;">http://www.jimmyfundwalk.org</span><span style="color: #1155cc; font-weight: normal; mso-bidi-font-weight: bold;">/</span><wbr></wbr><span style="color: #1155cc; font-weight: normal; mso-bidi-font-weight: bold;">2014/owen_mcgivern</span></a></span></strong>.<br />
<br />
- Send in a check: Write a check payable to "Jimmy Fund Walk" and
send it to </span><span style="font-family: Arial, sans-serif; font-size: 12pt;">Walking with Jane, PO Box
9721, Fall River, MA 02723. Please put Owen McGivern, in the memo section of the check. </span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;"><br />
<br />
Thank you in advance for your generosity! <br />
<br />
Beth and Owen McGivern<br />
<!--[if !supportLineBreakNewLine]--></span><br /><!--[if !supportLineBreakNewLine]--><br />
<!--[endif]-->Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com0tag:blogger.com,1999:blog-6718169399482231724.post-12661900577563264562014-08-09T21:39:00.002-04:002014-08-09T21:39:38.806-04:00Lynn M. Guidici<div class="PadderBetweenControlandBody">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">My friend and fellow carcinoid patient, Lynn Guidici,
died last Friday. She was 59. I met Lynn in 2012 through the ACOR message
board. We both lived in the New York area and had seen some of the same
doctors. Lynn was the first carcinoid
patient that I met in person. She was
diagnosed in 2006 and I was a relative “newbie” in 2012. Nonetheless, we were in similar situations in
thinking about debulking surgery, what our next step should be and if we really
trusted our doctors. We met over coffee
and hit it off immediately, talking and laughing about life, cancer, doctors
and poop. We talked and met up regularly
to catch up on things. She had a
debulking surgery in early 2013 and I went next in September. She never fully recovered from the surgery
and continued to struggle with eating and weight loss issues. She went on to have a liver embolization and remained
in declining health. I continued to see
her, going to Westchester where she lived so she would not have to travel into
the city. I last saw her a few weeks ago at her home and knew that this would
be my last visit. </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Lynn
was a warm and caring person who was so proud of her daughter Anabel, who just
graduated from high school and will be attending college in the fall. Perhaps
going away to college will help her deal with the death of her mother. Lynn's husband Bill survives her as well.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">I
feel quite upset, even though it was clear that Lynn was doing poorly. Knowing someone who has the same disease is
an amazing experience because they have the same hopes, fears and symptoms,
making them closer to you than most other people. Seeing Lynn die brings my own mortality up front
and personal which is very scary as well.
<o:p></o:p></span></div>
<br />
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt;">Rest
in peace Lynn, you were a great friend and confidante.</span><span style="font-family: Arial, sans-serif; font-size: 12pt;"> </span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com1tag:blogger.com,1999:blog-6718169399482231724.post-85894579404444599712014-07-20T14:46:00.002-04:002014-07-20T14:48:30.541-04:00How to Tell Someone She is Dying<div class="PadderBetweenControlandBody">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">There is an
interesting article with the above title in “The New Yorker” about doctor-patient
relationships. It concerns how to get a patient who is in denial or uncomfortable
with a certain treatment, in this case chemotherapy, to consider the alternatives. As a cancer patient, I want to feel in control of my options. Not being a
medical expert, I don’t know the pros and cons of different treatments. I need to rely on my doctors to give me their
opinion on what I should do but also the rationale for that course of
action. This was not always the way
patients were treated. The article states in part:</span><o:p></o:p></div>
<div class="PadderBetweenControlandBody">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">“As
recently as the nineteen-seventies, medical decision-making in the United States
was largely a doctor-knows-best endeavor. Physicians dictated clinical care
without feeling compelled to tell patients about their treatment alternatives.
Frequently, in fact, they did not even inform patients of their diagnoses.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Medical
practice has since undergone a paradigm shift. Physicians now recognize that
patients not only have both the right to information but also the right to
refuse medical care. Yet doctors are rarely taught how to partner effectively
with patients in making important medical decisions. There is a need for a
balance between helping patients make wise choices and respecting their rights
to refuse medical interventions.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">This
raises a fundamental question about the doctor-patient relationship: Is modern
medical practice all about 'patient knows best’? Or do physicians still need, on occasion, to
cajole their patients into doing the right thing?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Most
well-trained physicians believe that it would be a dereliction of their duties
to act merely as information providers, standing aside while patients make bad
decisions. Experience provides them with an important perspective to guide
treatment decisions. Yet a purely medical perspective can cause physicians to
lose themselves in details and lose sight of the more human element of patient
care such as whether the chemotherapy that shrank the tumor would improve the
patient’s quality of life.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">Only
a patient can determine the balance they prefer between the quantity and quality of
life they want. As cancer treatment becomes more
advanced, options can become less clear in their ability to produce a high
quality life. I would hope that my
doctor would understand my preferences and give me the best option to keep my
quality of life - even if that means no treatment or palliative care instead of
intensive medical therapies that would cause harm.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">The
link to the article is below:<o:p></o:p></span></div>
<div class="MsoNormal">
<a href="http://www.newyorker.com/online/blogs/elements/2014/07/cancer-chats.html"><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;">http://www.newyorker.com/online/blogs/elements/2014/07/cancer-chats.html</span></a><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt;"><o:p></o:p></span></div>
<br />
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com4tag:blogger.com,1999:blog-6718169399482231724.post-88469165921817416382014-06-20T06:07:00.000-04:002014-06-20T19:55:47.511-04:00Coming Out of the Cancer Closet<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">For many reasons, most importantly my health, I have decided
to retire from my crazy, extremely full-time financial services career. I have been in the financial services
industry for 33 years, longer than most people I know. My primary reason for leaving is that my
health has not been that great since my September debulking surgery. I was doing fine up until the time I went
back to work in December. For the past
nearly six months, I have had many gastrointestinal issues including heartburn,
diarrhea, nausea, vomiting, abdominal cramping and 3 partial or full bowel
obstructions. I have also been
much more fatigued since the surgery. Prior
to my surgery, my health problems were much less onerous. I believe the reason for these post-surgical
issues were:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">1) The debulking surgery left me with a shorter small
intestine. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">2) A very stressful job that required me to see clients and
go to meetings that could last 6 hours. Travel only made things worse.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"> In addition, I was
having trouble eating frequent meals of soft foods or sometimes any foods at
all due to fear of symptoms at work. I
thought I was fine and went back to eating a normal but not extremely healthy
diet. My job required me to dine and
entertain clients and other business prospects. Sometimes I ate and drank at
locations that I knew would not help my digestive symptoms. Traveling to and from client meetings was
also challenging as trains, planes and automobiles don’t always provide
convenient food choices and bathrooms. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">My full bowel obstruction and emergency room experience in
mid-April was the straw that broke the camel’s back. After that, I believed that I needed to make
some serious changes to my lifestyle, including paying very close attention to
my diet, sleep, health issues and stress levels. Deciding to retire meant I had to think about
my financial situation as we would have less money coming in. I would also need to figure out what to do
with my free time, although I can definitely look forward to being less
busy. I would also have to figure out
how to notify my employer and transition my clients.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Since my diagnosis in 2010, I had not told my employer I
have cancer. Even when I had my
debulking surgery last September, I told my boss I was having a
gastrointestinal surgery and that I would need monthly follow-up
afterward. He didn’t ask for any details
and for those who did, I said I was having part of my small intestine removed to
avoid having a bowel obstruction but did not give any other information. My
rationale for not playing the “cancer card” was that the financial services
industry is very competitive with an “eat what you kill” type work environment.
I did not want to be perceived as sick, as that would probably cause some
discrimination in the workplace. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">So, imagine my boss’s surprise last Monday when I said that
I was leaving because of health issues and that I have a rare form of
gastrointestinal cancer. He was shocked
and sympathetic and said that he would do everything possible to transition my
clients and help me to avoid any stress with the transition. I am working through a transition plan and
will be available to help, working from home as necessary, for the foreseeable
future but will not be going to work. I
spoke with some of my co-workers, who were also shocked that I could keep my
cancer secret for so long but very supportive.
One of my co-workers said one of my clients cried when she heard I would be leaving
for health reasons. <o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I have been retired now for over a week and am enjoying
myself immensely. I am sleeping at least
8 hours a night which is something I had not done for regularly for a long
time. I am focusing on eating 4-5 small
meals a day instead of rushing through meals and snacks at my desk or on the
road. I have been making home cooked
meals. Yesterday, I made a big pot of chicken soup with wild rice and
vegetables. I have enough soup to eat it
once a day for the rest of next week.
I’m already feeling better. <o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/12403115958975997487noreply@blogger.com5