Aloha! Bill’s Story – Life with GIST is a Marathon
By Bill Arrington
I was born in Cleveland, Ohio. I went from there to the army, and then lived in Georgia. Since I was in Vietnam I really liked the warmer weather and decided to make my trek to Hawaii. It was here that I met my wonderful wife, Susan. She was a young nurse, and we have now been married for over 26 years. We have two children.
Preparing for the Marathon.
I had completed 8 marathons but none in a few years. I decided that I would give it another go. I was running OK until I noticed a pain in my groin area. I let it rest and a few days later started back feeling no pain. After another couple of days of running the pains came back. I had figured it was a hernia but went to the doctor where it was confirmed. It was decided to do a hernia surgery. My primary doctor decided since I was over 50 that I should have a CT scan done. I said OK and still planned for my hernia repair so I could still get into the marathon.
Well, the scan came back showing spots on my liver. They did blood test after blood test. No tumor markers showed up. They thought it could be a variety of things. I saw a liver specialist and was tested for virus, parasites, bacteria. Everything came back negative. My liver doctor locally thought that perhaps it was just a huge cyst. He took the scans and reports to the local tumor board. The general consensus was it was probably a cyst but needed to check it out further. I remember sitting in his office and asking him this. So it is a 99-pct chance that it is not cancer? He responded well maybe a 90-pct chance. I walked away feeling pretty good.
They decided that the only way to really know was to do a biopsy. So that was scheduled for Jan 3, 2005. I had told them that if they found anything bad to remove it. They ended up only doing a biopsy and the hernia repair that I needed. When I woke up and spoke with the doctor I was greeted with a smile. He said well we found out that it is cancer but the good news is that there is treatment for it. That is when I first heard about Gleevec. I had one large GIST about 12cm by 10cm in the liver and four or five smaller ones. The primary GIST was in my duodenum and was about 2.5cm in size.
Treatment and GSI
I started on Gleevec soon after that. The doctor had only a few cases of GIST patients but is locally known as a top-notch oncologist. His thoughts were to try and get me to the highest dosage possible. Ultimately he wanted 800 mg a day. I got up to 700 mg in February 2005 but that was my limit at that time. I swelled up a lot and had rashes and all the typical side effects but I stuck with it. It was about April of 2005 that I found GSI. I started learning more about GIST and treatments. I continued until February 2006 when my local oncologist said I had growth occurring and we needed to switch to a brand new medicine called Sutent. Well, I had been watching this and it had just been approved a few days before this so it took me about 2 weeks or so to get the approval for me. In the meantime I stayed on my Gleevec. As soon as the medicine arrived, I was ready. I took Gleevec one night and the very next day I took my first Sutent.
I decided that I needed to start seeing a specialist, an expert in GIST. So I made my appointment with Dr. Trent in April of 2006. I took all my scans and copies of my reports with me. After undergoing more tests there I met with Dr. Trent. This was when I learned that I had not had progression under Gleevec. There was some growth that could be edema or just the fact that the tumor had liquefied. In any case, he decided that I should just stay on Sutent for now. He said when Sutent fails I can go back and try Gleevec again. Now I am on cycle 9 and doing ok on Sutent even though the side effects are not fun to deal with.
Preparing for the Marathon
Now I am still preparing for a marathon. My last one but it is for the rest of my life. It won’t be over until there is a cure for GIST. I have faith and trust in God. I know that once I leave here I have a home prepared for me. So that is not my worry. I just want to live each day that I am given just one day at a time. I make memories. Thanks to all of my friends on the List group I have learned a lot. One day we will beat this dragon, and even if I am not here some of you all will be, and that prospect makes me very happy.
(fondly known to us as Bill 5-0)