Welcome to my Carcinoid Cancer Website

Hi and welcome to my Neuroendocrine Carcinoid Cancer website.
Here you will find both my experience with carcinoid and information relevant to fighting Neuroendocrine Carcinoid Cancer (NECC). This is a new website reflecting my current interests and skips many important topics; links to much more highly developed organizational and personal pages are provided to fill in the gaps.
Welcome!

Me:...................................................................My story, such as it is.


SCCF :..........................................Southern California Carcinoid Fighters.


Links :...................................................Links to NECC fighter websites.


Research :.................................Interesting recent carcinoid related research.

ME AND MY UNWELCOME TUMOR CELLS

In May of 1996 I ate what I thought was a bad enchilada; I had a stomachache that wouldn’t go away. For months I sporadically conferred with doctors to no avail. It wasn’t until October that I got any relief from the constantly increasing pain. My primary physician took decisive action and ordered a C.T. Scan. The scan showed a thickening in the region of the ileum, presumed to be an infection. Antibiotics effectively eliminated the pain that I had lived with all summer within two days. After more tests and an examination by a gastroenterologist I had a diagnosis at last: Crohn’s Disease. Unfortunately, this diagnosis was incorrect. For the next two years I lived without much consequence from the disease. I watched my diet and took my anti-inflammatory medicine and seemed to do well. The pain started creeping back in 1998. The tumor buried in my ileum was growing, gradually obstructing the small bowel and causing the small intestine antecedent to the obstruction to stretch and distend. During this period I would experience cramping pain and borborymus (gut growling) about 6-10 hours after a meal. As the disease progressed, the pain and discomfort became worse; I also experienced bloating. I began to experience pain immediately after eating; this seemed to be a consequence of mid-bowel activity stimulated by the act of eating. Once scar tissue had accumulated around the ileum, even peristalsis of an empty small intestine could be painful. Gradually I eliminated high-fiber and "gassy" foods (corn, cabbage, pinto beans, etc.) and then all solids. By the time of my surgery my diet mostly consisted of eggs, soup, and BOOST. Crohn’s patients are generally advised to avoid surgery for as long as possible, but the time of reckoning was finally at hand. I had surgery for small bowel obstruction at the ileum on June 30, 2000; the surgeon was surprised that so little of the bowel showed the characteristic inflammation of Crohn’s Disease. Then he found the hard little “marble” in my ileal tissue. Exploration revealed multiple lesions on the liver. A biopsy discovered the “marble” and the lesions to be carcinoid tumors.The surgery was a great relief notwithstanding the diagnosis of metastatic carcinoid tumors in the liver. Post-surgical pain was easier to put up with than the pain I had been experiencing due to the obstruction and I felt much better. As I wrote a note to friends and family after the surgery:

“Kerry and I just got back from my post-op appointment with Dr. Cosman, my surgeon. All in all, what he had to say was very positive and encouraging. Although metastatic endocrine carcinoid tumors are dire indeed, it is possible to freeze or poison them in the liver. I have an otherwise healthy liver and he saw 10 of these little buggers - if I'm lucky we may be able to nail them. Dr. Cosman has patients who have had this syndrome for 5-10 years - it is usually a sluggish kind of tumor in any case. I'm going in for a CT-scan on the 17th and that will determine exactly how many of these lesions exist in the liver.

We walked along Swami's cliff and the sky was never so clear, the young girls so pretty, and the lateen sail of an outrigger was a white jewel in the deep blue. Food tastes extraordinary as well. I am recovering rapidly and I actually feel better than I did just prior to surgery in many ways; this condition can remain asymptomatic for a long time, chemotherapy may not be called for (different treatments are more efficacious), so I may skip some of the worst side-effects of treatment. Ironically, if I am lucky, I may suffer less from this than I would have from Crohn's, at least in the next few years.”

Carcinoid syndrome started making its appearance at this time, although it was not so extreme as in some folks I have since met. I had found earlier that year that I couldn’t sing through an entire choir rehearsal without coughing. That isn’t the wheezing which you read about but later Dr. Venook said he thought it was carcinoid related. I also had flushing episodes, particularly after having had an alcoholic drink, and diarrhea was a problem, plus symptoms which didn’t at first seem to be connected with carcinoid at all. After a consultation with Dr. Venook at UCSF I started self-injecting Sandostatin and felt immediate relief from these symptoms. The experience of sel-injection was not altogether an easy one, however.

Since February of this year I have been taking the long-lasting variety of Sandostatin and have only had to supplement it with sub-q shots a few times. My last C.T. scan shows no growth of the tumors. Two important carcinoid blood tests are serotonin and chromogranin, and the following table shows the normal range of each followed by my most recent measured level.

LOW HIGH MEASURED
Serotonin, BL ng/ml 101 283 812
Chromogranin NG/ML 2.6 14.3 17.8

This is not that bad for someone with carcinoid.

LINKS

Rather than list many links here, I’ll simply direct you to these websites, where you can find many more links to carcinoid-related subjects.

The Carcinoid Cancer Foundation, Inc. is a nonprofit organization chartered by the State of New York in 1968 for the purpose of encouraging and supporting research and education on carcinoid tumors and related neuro-endocrine neoplasms.
The Carcinoid CancerFoundation, Inc.:

THE NSCG, Inc. - A peer-to-peer support group for anyone with the rare carcinoid cancer.
The National CarcinoidSupport Group:

These pages by a long-term carcinoid fighter are a must for anyone just diagnosed with this disease.
Susan Anderson's homepage:

Al’s organized and orderly pages tell you everything you would want to know about self-injecting Sandostatin and even describes how to self-inject Sandostatin LAR.
Al Simm’s carcinoid pages

Take Bob’s carcinoid poll
Bob Griffey’s carcinoid pages

RECENT RESEARCH AND NEW DEVELOPMENTS

Cyber-knife. Radiation therapy has not generally been that efficacious in treating tumors in the liver. The Accuray cyber-knife may change that.

Serotonin and heart damage. A paper delivered at the American Heart Association’s meeting in New Orleans in December 2000 by Dr. Jian of the Children’s Hospital of Philadelphia demonstrates conclusively that elevated serotonin is a cause of right valve heart damage. This research was done on the cause of heart damage associated with the use of phen-fen, not carcinoid syndrome heart damage, but the conclusions are important for carcinoid patients. Your serotonin level is important in and of itself, regardless of its effectiveness or lack thereof in monitoring your tumor load. The paper (Levy, Jian and Liang, 2001) has been submitted to a refereed journal (no link as yet).

NIH is funding two research studies directly involved with carcinoid. This, so far as I know, represents the sum total of Federally funded carcinoid research. I would appreciate information about any other federally funded carcinoid research.

Grant Number: 5R37CA045234-16
PI Name: HANAHAN, DOUGLAS A.
PI Title: PROFESSOR
Project Title: TARGETED ONCOGENESIS AND DIABETES


Grant Number: 2R01DK043899-08A2
PI Name: KELLUM, JOHN M.
Project Title: SURGICAL STUDIES OF INTESTINAL SEROTONIN

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