NAME: Dina Bolshazy

EMAIL: Westie01@cox.net

HOME LOCATION: Chesapeake, Va

DOB & CURRENT AGE: June 20, 1951 (53)


I am not your “usual” noid, as I am an MEN1 (Multiple Endocrine Neoplasia Type 1) patient, a rare genetic hereditary disease. I am the rarer NOID. My carcinoid is a complication that MAY happen with an MEN1 patient. MEN1 patients grow tumors on endocrine glands. For more info on MEN1, go to NIH’s endocrine website at http://www.niddk.nih.gov/health/endo/endo.htm .

My history is long and varied, starting back in the early 70’s, having “irritable bowel disease”, cranky stomach, dealing with the tumors of MEN1 (pituitary tumor causing Cushing disease, parathyroids causing high calcium, etc.). I was lucky to be accepted into NIH’s protocol for Cushings disease in 1990, and I have been going there every year, mostly twice a year until recently. Keep in mind that NIH is a research hospital, not a treatment hospital. If you have one of the diseases they are studying, one might be accepted into one of their protocols.

My personal history with Carcinoid only starts in the mid 90’s. Since I am MEN1, I have been having yearly and twice yearly CT’s, MRI’s since 1990. I had my first OctreoScan in 97. I had been complaining to my personal doctor (at home) that I was having hot flashes. I was to young to be in menopause, and nothing was showing on CT’s and MRI’s. My first OScan in 1997 showed uptake in upper right quadrant, and liver (lower left lobe). I had been complaining about hot flashes for a couple of years by now. Since I had already been diagnosed with ZES, gastrinoma, I had a long history of stomach problems, and had been on Tagmet since mid 80’s and I had started Prilosec in 1990.

Over the years my gut kept getting worse, and I started with diarrhea, which I laughingly called “food in/food out disease”. My diarrhea started in 96 and continued, slowly getting worse. My “flashes” were not going away and my face getting redder and redder, with little broken spider veins in my face. My local endocrinologist said it was a dermatology problem, and local dermatology said it was an endo problem. Treatments for my skin on my face never improved the redness. Being an MEN1 patient the main doctor I see/saw was an endocrinologist. He knew something was up, but didn’t know what. By now I was taking 20mgs of Prilosec 3 times a day to control gastrin. My stomach was still making a fuss.

By 2000, my Prilosec intake was 40mgs 3 times a day, and my now my diarrhea was real bad. I was tired, I was sick, I had heart palpitations, horrible cramping, explosive diarrhea, joint pain, and those darn hot flashes were real bad. My gastrin was 580, my CGA was 620. I was controlled with Prilosec, (my stomach acid was controlled, Testing via NG tube that measures stomach acid). But my diarrhea was out of control… and I was losing weight (which I could afford to do).

At that time I returned to NIH for my yearly checkup and the OScan showed “uptake Left of midline, Right of midline, upper right quadrant, and uptake in pancreas. We knew about the pancreas (gastrinoma), but now clearly my OScan had changed. Until that time, it kind of stayed the same. That was a good thing. Now clearly something was up. My CT’s and MRI’s didn’t show what the OScan showed. They showed the normal… tumors in pancreas and little buddie in lung and on both my adrenals. Since my ZES was controlled, and my description of my diarrhea had changed, my doctor at NIH decided to try Sandostatin.

When testing came back, my only markers were CgA (680), Gastrin (520), and urinary 5-HT (5 hydroxytryptamine) (1295 norm less than 125), I had foregut Carcinoid. I asked about surgery, and my doc at NIH gave me an honest answer. She has always been open and honest with me, and I respect her tremendously. She said, and I will never forget it, “Dina, we don’t know which tumor to take out. I can tell you that even tho we can see tumors on scans, I guarantee you that if we open you up, we will find hundreds of tumors, as your tumors are diffuse. Since you have tumors in and on your pancreas, in your stomach, in your duodenum… you would have NO QUALITY of life if we removed your pancreas, stomach and duodenum, which we would never do. You can’t live without your pancreas, stomach and duodenum.” I agreed and said… ah… let’s not do surgery. I’ll go for quality of life. We decided to just handle what comes up, dealing with surgery when and if the time comes, dealing with one tumor at a time.

For me, Sando was and is a god send. My flushing (that is what my flashes were) improved drastically. My gut improved, my palpitations went away, my joint pain improved, my diarrhea is gone, and my energy came back. I felt like a new person. I have my life back. My levels have dropped to almost normal. Even some of my tumors have gone MIA, my lower left lobe tumor is no longer showing and my stomach tumors no longer show on scans. I still have RUQ pain at times, but I can control this with meds. Over the years I have had to increase my sub-q, to my current dose which is .3 (300) three times a day. My last stay at NIH was May 2004, and at that time I also had a bone scan. It showed some arthritis in places I knew about, and my spine (cervical & thoracic spine, shoulder) shows possible early mets. I don’t worry about it, I will wait to see what next year’s scans show, and deal with whatever they show then. I am still on sub-q. My Prilosec use has decreased to 40mgs twice a day. I choose NOT to take LAR. I feel I have more control with the sub-q, my personal choice. I use Military medicine as my husband is retired Navy, and appts would be hard to do with the Naval Hospital (the every 28 days for a shot). I still go, once a year, to the NIH, and will continue going until they close the protocol I am under.

I became proactive with my health after my mother was diagnosed with Carcinoid. I did not know anything about carcinoid back then (in ’95). I had just dealt with what my tumors did, which hormonal levels they decided to mess with. When my mother passed away from Carcinoid mets to her liver and I was diagnosed with Carcinoid… that was my wake up call. Until then, Carcinoid was not thought to be an MEN1 complication. Since 2000, my brother has been diagnosed with lung carcinoid this year, and has had surgery, (also MEN1 (all children of an MEN1 patient have a 50/50 chance of inheriting the gene)). Since I have been diagnosed with Carcinoid, I have started a support group for MEN1 to help others, and have met MEN1 patients that have carcinoid (or have carcinoid in their family), with doctors that say “that’s ok... it is only carcinoid, it’s a rare benign cancer”. ALL OF US NEED TO MAKE NOISE THAT CARCINOID IS NOT A BENIGN CANCER!!!

I will continue my personal fight, and I will continue to let all my doctors (my personal docs) know what Carcinoid is NOT OK, and provide them with current up to date information. I will continue to help others. We all have Choices and Consequences in our life. I choose to not put my head in the sand and think it will all go away. We ALL need to be proactive and continue our reading and researching, for knowledge is power. Only with knowledge can we be a partner with our healthcare team. We, with Carcinoid CAN make a difference.


Dina (in Va)
Westie01@cox.net

Currently... diffuse carcinoid (Carcinoid Syndrome) and gastrinoma (ZES) in/on Pancreas, in stomach, duodenum, in RLL, Stable Liver friend, and other "little buddies", oh yeah... MEN1 too. Http://listserv.acor.org/archives/MEN1.html