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My mom was diagnosed with Islet Cell Carcinoma in February 1996. She had initially gone to the doctor for what she thought was a bladder infection. Her doctor was feeling around on her stomach and thought he felt an aortic aneurism. He sent her for an ultrasound, and by accident, the technician saw a mass near her kidney. That led to further tests which ultimately confirmed a grapefruit sized tumor attached to several organs in her abdomen. She had had no symptoms whatsoever.

I was 9 months pregnant and stationed in Hawaii with my husband, and Mom didn't want to worry me, so she casually mentioned over the phone that she had to have a little surgery. She told me she had a couple of 'cysts' that needed to be removed and that she would lose her spleen and maybe part of her pancreas, but that it was really no big deal and I shouldn't worry. Being nine months pregnant with my first child and 3000 miles away from home, I took her at her word.

In fact, Mom had a 5 pound, grapefruit sized tumor that the doctors thought was attached to several organs and that it might or might not have been cancerous. When Mom went in for surgery, she was prepared to lose her spleen, her kidney, part of her stomach, and much of her pancreas. At the time, I had no idea.

Her surgery was scheduled for February 21, which was the day I went into labor. I delivered a son, and Mom delivered an islet cell tumor. It was attached only to her spleen and the tail of her pancreas, so she was able to keep her other organs in tact. The doctors said they would be unable to tell if the tumor was cancerous only if it recurred somewhere else in the body, probably the liver.

I had no idea what was going on. I had the number to the nurses' desk at the hospital where Mom was. I called with the news of my son's birth, and they put me through to Mom's room. My sister answered the phone and put Mom on. She was barely out of the recovery room, but she talked to me and shared in my joy while sparing me the pain of what was happening to her. My sisters had been sworn to secrecy as well because Mom said she didn't want anything to take away from the joy of our new baby, and she was afraid I would worry too much about something I couldn't help.

That was how she was. Mom was always thinking about others.

Five weeks after her surgery, she was on a plane to Honolulu where she and Dad spent 2 weeks with us, soaking up the sunshine and loving on their new grandbaby. She said it was the best medicine she could have had.

Mom amazed me. While she was there, she told me the truth about the surgery. She showed me her stomach and the scar that went from side to side, nearly cutting her in half. Then she put on a bathing suit and went snorkeling for the first time in Haunauma Bay. She went to the Punchbowl Crater, watched whales at the North Shore, flew to the Big Island where she walked through a lava tube and checked out a green sea turtle on the black sand beaches. Nothing slowed her down.

A year later, they found tumors in her liver. The islet cell was malignant.

By this time, my little family had moved back home to Kentucky. We were there when she went in to have the tumors removed from her liver. We were there when we were told that after further scans, there were too many to remove, and that Mom had only six months to live. The Mayo Clinic told her there was really no protocol for treating Islet Cell Carcinoma. She was advised to do nothing and see what happened. So she did.

Mom had no treatment for six years. She had scans every six months, but other than that, she was feeling fine. She had no symptoms. Her tumors were stable. People would ask her if she was sure she had cancer.

She was an active, fun-loving wife, mother, and grandmother. By this time, she had six grandkids and one more on the way. She babysat for us, took our kids for sleepovers, played like a child, went on trips, had parties, lived life.

In the winter of 2002, Mom was advised to try at new treatment called radiofrequency ablation. It had recently been shown to have success with tumors in other organs besides the kidneys, and her oncologist said the size of her tumors were perfect for this type of treatment. He suggested they would shrink and maybe disappear altogether. She said go for it.

The initial surgery went fine. She was in and out in just a few of hours. But something went horribly wrong, and Mom ended up with blood clots in her lungs and legs. She had to have emergency surgery the next day to put a stent into her vena cava. She spent the next three weeks in the hospital struggling to get well. She was never the same after that.

Mom developed type 2 diabetes. She began to lose weight. She would get frequent bladder infections. She had to have her gall bladder removed. She got unexplained fractured ribs.

In the spring of 2004, the doctors suggested that Mom try chemoembolization of the tumors in her liver. They were going to do one lobe first and the other lobe one month later. Again, it was supposed to be a very non-invasive surgery with few complications. Recovery time was only supposed to be a couple of weeks.

Mom was sick for over a month after the surgery. She threw up for several days and stayed weak and unable to do much. The doctors determined that the chemo did nothing for the tumors and decided to do the embolization without the chemo. Mom had basically the same reaction as the first time only not quite as severe.

The following summer, Mom began experiencing yeast infection after yeast infection. She also had a fungus under her nails and sores in her mouth. She began throwing up after eating a couple of times a week, and she would have shooting pains in her abdomen that would come and go.

After many trips to the doctor and several tubes of Monistat, Mom was referred to a dermatologist. He looked at her and suggested that what she had wasn't a yeast infection, but necrolytic migratory erythma (NME) that was caused by her tumors becoming active. He said he'd only ever seen it in a text book. After doing blood work, the doctors determined that Mom's glucagon levels were sky high, and further defined her islet cell carcinoma as glucagonoma syndrome.

We had never heard of that, so I began researching and found this board. After doing more studying, we realized that all Mom's symptoms---the diabetes, the gall bladder problems, the weight loss, the nail issues (it wasn't fungus after all), the yeast infections, the vomiting, and the stomach pain---could all be explained as symptoms of glucaganoma syndrome. It's just so very rare, that no one had put two and two together.

Mom began holding fluid. Her legs began to weep. Her mouth got so sore she couldn't eat. Her fingers and toes were cracking and bleeding. She could barely get shoes on. Her vomiting got worse. The doctors had no idea what to do. At one visit, her main oncologist had all of his associates come in and look at Mom's rash because as he said, 'In 25 years as an oncologist, I have never seen this in real life.'

Mom was referred to another doctor who suggested an injection of Therasphere beads into the tumors in her liver to try and stop their production of the hormones that were causing all Mom's symptoms. She was so sick, she didn't even question the fact that this was experimental or that her prior surgeries might make her a marginal candidate for this. On April 25, 2005, Mom had the injection.

Everything went fine at first. An hour after the procedure, she was up and eating a ham sandwich and drinking a Diet Coke. Three days later, she was near death, so dehydrated from vomiting that the doctor had to put in a central line to get fluid in her. Five months later, she was dead.

Mom spent most of the last five months of her life in the hospital or a rehab center. She could keep nothing down, not even ice chips. She had a g-tube and a j-tube. TPN went in one and bile came out the other. She was so weak she couldn't get out of bed. She ended up in the ICU after a catheter gave her a raging kidney infection. All of her major veins were clotted. She almost died several times from infection.

No one ever really determined what happened or why the Therasphere went so wrong. The only thing that any doctor would ever suggest is that maybe she wasn't really a good candidate because the prior embolization procedures had closed off so many veins/arteries and so the radioactive beads just backed up into her digestive system and destroyed it instead.

My dad didn't have an autopsy done. I wish he would have.

Mom came home with Hospice in mid-August 2005. She died on September 24, at home, surrounded by her three daughters and her husband of 39 years.

She was a brave and wonderful woman. A light went out in our family the day she left us. The eulogy I wrote for her funeral is posted as well.

Thank you for reading this.

Posted 01/28/2008 08:33 am by Sharron
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