Did April Fool’s Day Come Early This Year?

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? 

Do you think this is a typo?  I know NYC rents are rising fast but this is ridiculous!

Second Time for Bland Liver Embolization

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^th.

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^th 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. 

My January 7^th 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.

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:

• 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
•  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.
• I do not have “carcinoid syndrome” at all right now
•  Sandostatin LAR has always caused me icky side effects – mostly gastrointestinal - that make my life miserable

After reviewing the above, we both agreed that is was ok for me not to take Sandostatin LAR. 

At this point, my tumor load is quite low with only smaller tumors located in inoperable places.  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!

Bland Liver Embolization was a Success!

On July 15^th, 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:

http://walkingwithjane.org/2015/04/28/liver-embolization-some-background/

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. When having this procedure, it is important to have an interventional radiologist that has a lot of experience with liver embolization.

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.  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.  They will monitor with another CT in November and do the left side embolization if they grow. 

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.

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.  I wonder if the PRRT might have worked on these tumors, just not for the liver lesions. Now it’s time to give my body a break from treatments for a few months.

Peptide Receptor Radionuclide Therapy (PRRT) Did Not Work for Me

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.

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 http://www.ncbi.nlm.nih.gov/pubmed/25117465). 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%. 

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.” 

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. 

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.  

When Breath Becomes Air

When Breath Becomes Air 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:

 https://bethsadventureswithcancer.blogspot.com/2014/01/how-long-have-i-got-left.html   

This is my definite “best book” pick of 2016, even though it is only May. 

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.

On dissecting a cadaver in medical school:  “Cadaver dissection epitomizes, for many, the transformation of the somber, respectful student into the callous, arrogant doctor.”

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.”

“The word hope 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 ’defeated’ to ‘pessimistic’ to ‘realistic’ to ‘hopeful’ to ‘delusional’?  It occurred to me that my relationship with statistics changed as soon as I became one.”

“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.”

“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.”

“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.”

“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.”

Enjoy the book and honor our fallen soldiers on this Memorial Day.

Peptide Receptor Radionuclide Therapy (PRRT) Clinical Trial at Memorial Sloan Kettering

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). 

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.

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. 

The clinical trial has been extremely scan intensive and I had the following two scans before even entering the trial:

• CT scan of the chest, abdomen & pelvis
• Octreoscan

Diagnostic Phase

Once in the trial, I had the following scans, and this was just in the diagnostic, not the treatment part of the trial:

• Glomerular Filtration Rate (GFR) - Scan to measure kidney function
• 68-Ga PET scan with 68-Ga-DOTA-JR11 - Scan to measure if my tumors have the right receptors to bind to DOTA-JR11

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.  

Next phase of the trial:

Treatment Phase

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.

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!  

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!

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….

In between the rounds of PRRT, I will be getting blood tests done every 2 weeks.

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. 

I’m hoping that that my tumors shrink and am looking forward to seeing what my next scan shows in a few months.  

So Much for Tumor Stability

I am now off the Cabozantinib clinical trial. My latest MRI showed 11% growth in my tumors since the last scan on November 22^nd.  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:

1. A clinical trial at Memorial Sloan Kettering Cancer Center (MSKCC)
2. Going to Excel Diagnostics in Houston to do the PRRT under a “Right to Try” law.   

I could also go to Europe where several countries provide PRRT to neuroendocrine cancer patients. Given that I live in New York City, going to MSKCC would be the easiest option.  Also, my husband is having medical problems now as well and I am both patient and caregiver, a very difficult set of responsibilities.

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.

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.  

Tumor Stability – Something To Be Thankful For

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.

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. 

Below is a description of how solid tumors are measured:

Response Evaluation Criteria In Solid Tumors (RECIST).*

·         Complete Response (CR): Disappearance of all target lesions

·         Partial Response (PR): At least a 30% decrease in the sum of the longest diameter (LD) of target lesions, taking as reference point the baseline sum LD

·         Stable Disease (SD): 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

·         Progressive Disease (PD): 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

* Source:  Wikipedia

On this Thanksgiving I am thankful that my tumors are still stable and that things are status quo.  I hope you can find something to be thankful for and I wish everyone a Happy Thanksgiving.

Tumor Stability and Quality of Life Issues

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. 

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.

Last week I had my 8 week MRI and chest x-ray and the tumors were stable!  This is great news!  Even better, we decided to lower the dose to 20 mg daily, hoping to stop some or all of these side effects.  I’m hoping to continue to be stable with the lower dose.  We’ll know how that works in another 8 weeks.

Difficult Decisions

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. 

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.  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:

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/biological/types/cancer-growth-blockers

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. 

If my tumors stay stable or shrink, I’ll stay on Cabozantinib.  If they continue to progress, I’ll get out of this clinical trial and try something else.  I’m not sure if the “something else” will be Afinitor off label or another type of angiogenesis clinical trial.  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.  The clinical trial consent form listed 125 possible side effects!   That was quite daunting.  So far so good, I hope it stays that way and works to stabilize or shrink my tumors.

Tumor Progression

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. 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:

1)  Immunotherapy Phase 1B trial of MK-3475 in patients with advanced solid tumors

2)  Angiogenesis inhibitors (new form of chemotherapy) – there are a few choices for me in this category

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. 

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.

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. 

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:

1)  Cabozantinib:  This is a phase 2 trial of a drug that is approved for thyroid cancer. 

2)  Aflibercept:  This is also a phase 2 trial of a drug that is approved for colorectal cancer.  

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.

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.  

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.

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. 

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.

The link to Dr. O’Dorisio’s chart is below:

norcalcarcinet.org/files?download=66:flowchart-for-treatment-of-nets-o-dorisio

Overkill

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!

Below are some excerpts as well as the link to the article. 

An avalanche of unnecessary medical care is harming patients physically and financially. What can we do about it?

Stuart Bradford in The New York Times

“Low value care is defined as one of twenty-six tests or treatments that scientific and professional organizations have consistently determined to have no benefit or to be outright harmful.  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.”

“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.”

“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.”

“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'.”

“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.”

“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.”

“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.”

http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande

Black Raspberry Powder

Since my surgery in 2013, I have had problems with bowel movements – everything from frequency size, color, timing and consistency.  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.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.  You can find links to her blog describing how to use it and its benefits here:

http://lucysnoidblog.blogspot.com/2011/12/black-raspberry-powder-video-thanks-to.html?q=brp

http://lucysnoidblog.blogspot.com/2012/01/brp-diary-what-i-learned-today-just.html?q=brp

http://lucysnoidblog.blogspot.com/2012/02/extract-black-raspberry-goes-portable.html?q=brp

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.  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:

http://www.ochsner.org/content/misc_files/black_raspberry_paper.pdf

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 (www.berrihealth.com) .  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: 

http://www.vitacost.com/nutri-fruit-powder-black-raspberry-5-oz

Dr. Woltering suggests the following protocol:1 gram of BRP per kilogram of body weight. 1 quart of lukewarm water. Mix in the BRP and water.  Stir and refrigerate overnight.  The next morning, put the liquid through a strainer to eliminate the residue and seeds. Drink the quart of BRP throughout the day until finished.  I also follow Lucy Wiley’s very good suggestion of storing the BRP mixture in two Snapple bottles. 

Thanks to Lucy for this idea

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. 

The contact information is here:

http://www.berrihealth.com/community/contact

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:

The dosing for Dr. Woltering’s protocol is as follows:

Body Weight in Pounds =	Body Weight in Kilograms (kg)	BRP in grams (gr) daily
125	57	57
150	68	68
175	80	80
200	91	91
225	102	102

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.

Body Weight in Pounds	BRP in grams (gr) daily	Tablespoons
125	57	4.8
150	68	5.7
175	80	6.7
200	91	7.6
225	102	8.5

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! 

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. 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.

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. 

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!