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GIST Support International - Jill's Story
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Jill's Story

I am a 34-year-old mother of three wonderful children. My first two are adopted due to three miscarriages (of unknown origin) and my youngest was born after the miscarriages and after a blood tranfusion and the chrondroma found on my lung. But before my Carney's Triad diagnosis. I was diagnosed with Carney's Triad in September 2006 after surgery for gallbladder removal and the doctors losing a stone and going endoscopically to remove it. That's when they found the multiple tumors in my stomach. I had no symptoms and no pain then.

I have two components of the Carney's Triad: the chrondoma in the lung and multiple GISTs in the stomach (9cm, 1cm, .5 cm). I had a total gastrectomy in October 2006 with clear margins and removal of what they thought was a paraganglioma on my left adrenal gland. The adrenal mass turned out to be just a small mass and was not cancerous. I had anemia in 2004 and 2005 with blood transfusions for both. The mass in lung found in 2002 but doctors then tested it and only said it was not cancerous but didn't know what it was. I was told they would just watch it.

Since my gastrectomy I have endured Staph infection in my incision site, bouts of severe nausea and vomiting along with dehydration requiring a home IV for fluid. I also developed low potassium which caused three falls, the last causing mulitple contusions to both legs from knees down to feet. Now I have IVs at home for potassium with saline.

Finally (5 months post-surgery) I am able to eat fairly well and keep fluids down without much nausea or vomiting and my potassium is back in the normal range. I still get B12 shots and IVs every couple months for iron and now possibly for potassium if it continues to drop. Dr. Carney and his staff at Mayo Clinic are still testing my tumors for mutations and my doctor told me because it is taking so long with no known results, that I'm most likely going to be the wild type. So he is not going to put me on any meds since at the moment I am NED (no evidence of disease) and if I am the wild type it most likely wouldn't help but I would have all the side effects of the meds. And as he said, I already had enough without that too. So right now we just have to continue the CTs every 2 months.

Recently, I started having pain at the top of my incision site by my sterum and felt a small knot. I went for a CT scan sooner than my scheduled one to check for any tumors. I have been told the CT has shown no further evidence of disease. But the doctor still hasn't given me a reason for the pain or a remedy. I go back soon and hope to find some relief.

I have to say through all this my family and friends have been wonderful. I would have never made it without them. There have many nights of them cooking, bathing my kids and helping me dress myself. I am now thankful to God for everyday I have to spend with my kids , my family and my friends. This has caused me to step back and learn to slow down and appreciate life more. This has brought me closer to God because He is the one who truly helped me through all this. I just pray that one day they find the cure for us all!

Jill
St. Louis , MO



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