Vicki and the light of her life Samuel in Hawaii

The beginning symptoms started in 1983. They were subtle. It started with diarrhea. I thought this was very strange as I was normally constipated. I also started flushing and feeling as though I was having hot flashes. In 1986, I noticed that I was flushing severely with even a taste of alcohol. Soon, I started having severe pains in my abdomen on and off. These attacks would come at any time, without any explanation, and could cripple my entire day. The doctor told me it was irritable bowl syndrome.

In 1987, I was under a lot of stress with moving 3 times. We sold our home and moved from Colorado to Milwaukee. I was working at a clinic there and saw more doctors. It seemed that it was all in my head. I was exhausted, but kept going and pushing myself. In June 1990, we moved to Texas. When I was working at a doctor’s office here, I felt even more exhaustion and discomfort. I couldn’t even move often without pain. Labor Day I got very sick. Dr. Wolski, my employer, ordered an ultrasound and found the tumors on my liver and pancreas. I was then sent to an oncologist in Denton. He did a liver biopsy and then sent me to MD Anderson. They misdiagnosed the cancer and subsequently gave me the wrong amount of chemo (5 FU & Streptazoticin).

In 1991, I had surgery where they removed 5 feet of my small bowel and 1 foot of colon. They found the primary tumor off the ilium. I restarted my chemo for approximately another one and a half years. After this chemo, I began to do better. In 1995, I went back into the hospital. There was still no mention of Sandostatin. One doctor wanted to remove my gall bladder. They didn’t know to associate this with carcinoid. They said it would be this way as long as I lived. I was put on Prilosec and other stomach medication. Soon, I found out that the PDR said Prilosec caused carcinoid 5% of the time. I ended up very sick from the medicine and took myself off it. I started doing better and ended up staying away from doctors as long as I could manage.

In early 1998, we took our niece and nephew in because their mother and father were killed in a car accident. This was a very stressful and busy time for me. Also, I found out that in 1998 I lost my insurance. My husband’s boss fought for me to get insurance. During that time, I still tried to stay away from doctors as much as possible. In 2001, I started losing weight at a fast rate. I was getting diarrhea and very sick again. I went to the doctor and of course, the carcinoid was in full motion. This time we checked the internet and found a lot more information. This led us to Dr. Anthony in New Orleans. I was introduced to Sandostatin / Octreotide. I was very frustrated to find that I had gone 15 to 16 years without this medication.

It’s now 2005, 4 years since Sandostatin. I have lots of fluid problems, and a large amount of my liver is involved. God has been very good to me in this time. He has provided when the doctors didn’t know what to do. All tolled, I have survived living with carcinoid for 20 to 22 years. I encourage all of you noids, knowing they know so much more now than when I started. I pray you have many quality years.