Monday, March 2, 2015

Big Apple NETs

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 bigapplenets.org 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!

Big Apple NETs is also hosting a lunch with some of the doctors from Mount Sinai on April 12th.  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.


Please take a look at our new website and join us for a support group meeting or event.  

I love the zebra apple!

Wednesday, February 11, 2015

John Oliver on Marketing to Doctors

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:


I covered this subject a few years ago – you can see that post here.

I still think the ProPublica website (http://projects.propublica.org/docdollars/) 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 (https://openpaymentsdata.cms.gov).

Tuesday, January 27, 2015

Words That Obscure

I love Susan Gubar’s column Living with Cancer in The New York Times.  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:
1.  “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."
2. Terms 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?"
3.  Terms created by patients such as “scanxiety” and “chemoflage”. There is a hilarious discussion of acronyms created by patients such as:
·         BBP (bald barfing person)
·         PSHIFTY (person still hanging in fine thank you)
·         QIBIFA (quite ill but inexplicably fat anyway) and finally, one that was in the comments, not the column:
·         PhD (patient hasn’t died)

The link to the article is below:


 That’s it for today when the "non-historic" blizzard came to New York City!

Sunday, December 14, 2014

My New Life

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. 

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. 

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. 

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.

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 How to Retire Happy, Wild and Free – Retirement wisdom that you won’t get from your financial advisor 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:
  •  Activities that turn me on now
  •   Activities that turned me on in the past
  •   New activities I have thought of doing
  •   Activities that will get me physically fit
An example of a “Get a Life Tree” is below:



Enjoy the holidays and here’s to a happy and healthy New Year to all!




Saturday, October 25, 2014

Sunday, October 12, 2014

Tumor Markers and Scans

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. 

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. 

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. 

CgA

Result
Ref Range
% Over/Under Range
8/30/2010
1243
<50
24.86
8/15/2012
585
<225
2.60
2/14/2013
236
<93
2.54
4/5/2013
182

1.96
8/9/2013
295

3.17
10/4/2013
43

0.46
1/15/2014
93

1.00
2/13/2014
89

0.96
3/14/2014
109

1.17
6/5/2014
140

1.51
7/10/2014
138

1.48
10/1/2014
314

3.38

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. 

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. 

5-HIAA
Result
Ref Range
% Over/Under Range
9/8/2010
74
<18
4.11
2/15/2013
33
<8
4.13
1/16/2014
7.6
<8
0.95
10/2/2014
8.2
<8
1.03

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. 

Wednesday, September 24, 2014

Too Young to Die, Too Old to Worry and Why I hope to Die at 75

This past week I saw two articles with the above titles and was intrigued.  “Too Young to Die, Too Old to Worry” was in The New York Times and the “Why I Hope to Die at 75” was in The Atlantic. 

They both had similar themes:

“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.”

“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.”

“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.” 

“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.”

“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.”

Both articles focus on how after certain ages, the benefits of prevention are not worth the hassles of testing, surgeries and medications. 

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: