Pat’s Story   –  I Specialize in Rare Diseases

by Pat Swenson


My First Anniversary

Hello All:

I do not post often, but as I approach the first anniversary of my diagnosis with GIST I thought that my story over the last year may be helpful to someone out there. Here goes…

I developed a pain in my abdomen that would not go away. So I went to my doctor. After we agreed that I am not a complaining type of patient and that it probably wasn’t indigestion, he thought it would be a good idea for me to see a radiologist to see what was going on. As the tech did the sonogram, I could tell there was something wrong as she clicked away taking measurements. The doctor had me come back the next day for the first of many CT scans. At the age of 51 (at the time), it was my first scan. I was diagnosed with a ‘possible’ GIST tumor on September 16, 2007. The radiologist had never seen one. Not only did he note the mass in my stomach, but also two enlarged lymph nodes in my abdomen.

I live on Long Island, NY about 45 minutes (without traffic – if you have ever been here, you know what I mean) from Sloan Kettering in NYC. I was able to schedule an appointment with one of the top GI GIST surgeons there in one week! When I saw him,he was certain that it was a GIST and we scheduled surgery for October 7, 2007. I was able to travel during the week between my appointment and surgery to one of my largest shows of the year (I build exhibits for trade shows for a living and travel several times a year). My GIST was 7.8 cm with a very low mitotic rate, so I am in an intermediate risk category. It was removed with clean margins and I had a partial gastrectomy.

I started on 400 mg Gleevec on November 18, 2007. I did not feel well on Gleevec and after a month of nausea and the runs, the oncologist gave me a prescription for Composine to take with the Gleevec. The Composine helped. I didn’t feel well, but at least I wasn’t sick and running to the bathroom 8 times a day (no exaggeration). My liver enzymes started elevating. My January scans showed the two lymph nodes shrinking slightly. At my six month exams at the end of April, both the oncologist and surgeon started noticing the nodes again and both grew concerned.

At this point, my liver enzymes were ten times what they should have been and by the end of April, I was taken off Gleevec since my blood work now showed that I had developed auto-immune hepatitis. It took six weeks for my enzyme levels to get back to normal. Mid June I had scans done and went back to the oncologist to see what to do now. My scans now indicated that the nodes were now larger than they had originally been in September and the report referred to them as masses. I was put back on Gleevec immediately at half dose (200 mg) and 10 mg of Prednizone. At that point they thought I had either metastatic GIST or Lymphoma.

I got to the surgeon a week later. He took me off Gleevec immediately. The concern was that if it was Lymphoma the Gleevec and Prednizone would affect the pathology. We scheduled surgery for the last week in July. As it turns out, I must be a medical mystery because I don’t have either. I was diagnosed with an even more rare disease than GIST called Castleman’s Disease. Apparently there are between 1,000-2,000 cases diagnosed a year. The good news is that it is considered a precursor to Lymphoma and is a benign disease. Resection is a 90% cure and I have very little chance of recurrence! I still need to have it followed and watched, but I feel like I dodged a bullet! I saw my oncologist just before Labor Day and we decided not to go back on Gleevec since there is no way of knowing if it will cause me permanent liver damage and I am not willing to risk that.

Apparently the reaction I had is also pretty uncommon. My scans are currently clear (I will have them done in early November). I am conflicted about not going back on Gleevec. There is something reassuring about taking a pill everyday that makes you feel like you are doing something proactive to help yourself, but on the other side, I feel the best I’ve felt inlonger than I can remember.

As I come full circle, I leave in a few weeks for the show that I attend every year at this time and look forward to seeing many of my clients that wished me well last year as I was facing surgery.

I leave you with a few thoughts about religion…

I don’t think it matters what you call God, as long as you believe there is one.

What makes us great as human beings is our diversity and tolerance for each other (hits home for me having built the Museum of Tolerance in LA many years ago)

..and lastly, at this time of year in the Jewish religion, we ask on Rosh Hashannah (the New Year) to be inscribed in the book of life for another year and hope that on Yom Kippor (the day of Atonement) when the book of life is sealed that we are inscribed it for health, happiness, and peace for the coming year.

I pray that we are all inscribed in the book of life for another year. Sorry for such a long email, but it’s been a year coming!

Good health and happiness to all,

Pat Swenson