Name: Jan Jackson
Location: Eagan, Minnesota
Diagnosis: December, 2000 – midgut carcinoid
Doctors I would recommend:
Thomas O’Dorisio (Specialist) University of Iowa for both carcinoid and thyroid disease
My Story: For most of my life I’ve had weird problems. When I was nine years old, I had an appendectomy. As a teen-ager I had thyroid problems and major distress whenever I had a menstrual period. At 20, I had hepatitis A and spent the whole summer in the hospital or at home, in bed.
Still, I always thought of myself as healthy. As the years went on, there were strange bowel problems, too. I had my first barium bowel X-ray at 26. Then another in my 30s and another in my 40s. Nothing showed up.
When I had my first child, I was given codeine for the pain. It caused my blood pressure to soar and a highly elevated heart rate. Later, I had to quit regular coffee and then regular tea because caffeine caused the same set of symptoms.
When I had my second child, I was given Sudafed for as sinus infection and my blood pressure roared up to high 200s over high 100s. I should have stroked out but, thank heavens, I didn’t. The bad part was although my bp went back to normal, it then started creeping slowly upward. I had no kidney disease, no family history for this; I was slim, active, ate a decent diet. There was no obvious reason for me to have high blood pressure.
Forward to my 50s. By now I had chronic diarrhea, diagnosed as IBS. It kept getting worse and worse yet my gastro-enterologist still insisted it was IBS. In November, 2000, I began having bouts of explosive vomiting. I’d throw up 13 to 20 times and then feel 100% better after that was done. Hmmmm. I called the GI doc and told him. That was when he finally ordered a barium CT with contrast. It was a nightmare. I spent an hour in the restroom at St. Paul Radiology and then hit nearly every restroom along I-35 all the way south to my farm near Lonsdale where I was living at the time.
What showed up on the CT was an enormous black tangled mass in my bowel. My GI doc said it was carcinoid. I said Take it out.
Unfortunately at that time, while I had read some about carcinoid because I was looking for a cause to my discomfort, I had no idea there were such things as carcinoid specialists or, more importantly, carcinoid surgeons.
My surgery was done locally, with a surgeon who did not do any homework despite my GI doctor saying it was carcinoid. 30” of small bowel, six involved lymph nodes, some mesentery, and the ileal-cecal valve were all removed. However, I had no Sandostatin IV drip, not before, during, or after surgery. That negligence caused me to bleed profusely and I had to be tranfused four days later. My oxygen levels were extremely low. My bp bounced all over the place. Recovery was difficult to say the least. BUT coming from hardy Norwegian and Hungarian stock (thanks, mom and dad), I was not going to be defeated by a little surgery.
For the next two years I dealt with an oncologist who knew nothing about carcinoid. He only ordered a 5-HIAA every three months (which never showed anything). He never mentioned octreotide. Luckily for me, he retired. My new oncologist was a young hot shot from Poland who also went to med school there – Dr. Andrzej Petryk.
The Europeans know much, much more about carcinoid than the North American doctors. At least that was certainly true in the early 2000s. Now, our doctors are finally playing catch-up. For me, Dr. Petryk was a godsend. He began ordering tests and scans left and right and frankly, scared the crap out of me. However, that spurred me on to do my own research.
One of the first scans Dr. Petryk ordered was an octreoscan. I had the privilege of using one of the first octreoscan machines ever produced (make that old, antique, obsolete), which was in the sub-basement of United hospital. The scan showed lights in my liver. Oh oh.
Around this time, I made contact with the Minnesota Carcinoid Support group from whom I learned a lot more, and was urged to see a specialist. First, I went to Mayo, spending five months going back and forth there, being denied octreotide repeatedly, until I got fed up and made an appointment with Dr. Tom O’Dorisio at the University of Iowa.
How did I get so lucky? On my first visit, O’Do had his nurse inject me with sub-cutaneous octreotide right there in his office. I was on that for the traditional two weeks and then got my first large Sando LAR injection back home, in Dr. Petryk’s office.
After a year on Sando LAR, I had a second octreoscan. There were no more lights in my liver. O’Do said that the Sando had shrunk the tumors. This does not happen to everyone but it happened to me.
I was on Sando LAR until 2008 when it seemed to stop working for me. I had lots of syndrome; my octreotide blood levels were around 25,000 (optimal levels are 10,000 to 12,000, although 5,000 is acceptable). Mine were absurdly high.
Dr. O’Dorisio ordered an insulin pump for me. It pumps octreotide acetate full-time. The pump has worked very well for me, although my blood levels are still too high (which seems to be a chronic thing peculiar to me).
Because I am small bowel carcinoid and 30” of the terminal ileum were removed, so was my capacity for absorbing vitamins and nutrients from food. I take a lot of supplements. I also have a rare side effect of carcinoid – Pellagra. This is a niacin deficiency (vitamin B3). Once epidemic in the U.S. south, it is now seldom diagnosed. Pellagra is called the “four D’s” – dermatitis, diarrhea, dementia, and death. But there is a fifth “D” – rampant tooth decay. I lost my teeth to it. Through most of my life I have taken multi-vitamins. Because of that I always got some niacin so I never got to the dementia and death part of the disease.
I also have thyroid disease (Hashimoto’s) and goiter. My thyroid bounces all around – high, low, and non-functioning and I take three different meds for that. As the thyroid is a neuroendocrine organ and carcinoid is a neuroendocrine disease, it seems obvious there is a link between them.
Overall I have done extremely well just being on octreotide. Dr. O’Dorisio says I probably have thousands of microtumors – “tiny but mighty” is how he puts it.
A number of carcinoid patients I’ve talk to have also had appendectomies as children or teen-agers. Wouldn’t it be interesting to see the pathology on those?