That's the Gist of the GIST

Back in August of 2008 (3 months after my c-section) I had a tumor the size of a small watermelon removed from my abdomen.  It was attached to my large intestine.  They removed 1/3 of my colon and reattached my large intestine to the small intestine.  The pathology report revealed it to be GIST (gastrointestinal stromal tumor).  This is a rare cancer with an extremely high recurrence rate. Chemotherapy and radiation do NOT work AT ALL on this type of cancer.  BUT, there was a new drug that had been first developed for leukemia patients that was saving GIST patients lives.  It was a MIRACLE drug.  It had just been approved for use by GIST patients in 2002.  This drug is GLEEVEC and it was discovered right here in my own backyard in Portland, Oregon at OHSU.  Gleevec reduces the size of existing tumors and prevents new tumors from forming.  To learn more about the history of this groundbreaking drug that has contributed to a SURGE in cancer research and has saved so many LIVES go to this link:

http://www.innovation.org/index.cfm/StoriesofInnovation/InnovatorStories/The_Story_of_Gleevec


     Anyways......I took this drug for 4 years and remained cancer free.  Then I was diagnosed with breast cancer (Stage II B..Her -), had a right breast full mastectomy, and underwent chemotherapy (AC + T).  Before I started chemotherapy my oncologist had me stop Gleevec.  He was afraid that Gleevec would adversely affect my anemia and white blood cell count.  Now I am DONE with chemotherapy - HOORAY.  I just had a PET scan last week and it looks for the most part that my body is clear of cancer (I say most part for a reason - more on this later).  My oncologist was not sure if I should go back on Gleevec....he was on the fence.  He felt it might be causing some heart problems.  My echocardiogram showed some thickening of my ventricular wall.  He said my heart looked like someone with high blood pressure, BUT I have wonderful blood pressure.  He thought maybe the Gleevec caused this since the echo was done at the beginning of chemo.  Long story short.....he wanted me to go to an expert on GIST and Gleevec and get his opinion.  My oncologist said he thought maybe I shouldn't go back on it, but he wanted me to have all the facts and for me to make a decision that would feel good in my heart.
     So today I went to the expert......SO INTERESTING!!!!  His partner is the man who developed/discovered Gleevec.  He was the director of the very first clinical trials, he is the director/chair to several large/prestigious cancer and GIST organizations. People travel from all over the world to be treated by him and his team.  He is considered one of the most prominent Gastrointestinal oncologists in the world......let's just say, he knows his stuff.  He only sees patients with GIST.
Here is what he told me:
- I have the nastiest type of GIST.  He said GIST that starts in the large intestine is the rarest and the scariest.  He also said the mitotic count, the rate of growth, and the size of the tumor let him know that I was in the highest danger group.
- He told me that in no uncertain terms that if I had gotten this cancer prior to the year 2000....I would have been DEAD within a year.  He said the GIST would have recurred and there would have been nothing they could have done prior to Gleevec.  I had heard this before, but it still freaks me out to this day AND makes me feel extremely grateful for the advances in medical science.  Science RULES.
- In the first clinical trial the patients were on the drug for one year....this kept the cancer in remission.  After they stopped the drug, most of the patients with my pathology recurred 6 months-1 year later.
- Next, they tried 3 years on Gleevec.  Same thing happened again.
- Currently, they are now on a 5 year clinical trial.....the results are not in yet.  But, my doctor thinks the same thing will happen.  He said some patients are very susceptible to Gleevec and the cancer will never come back.  BUT, he thinks I am in the category where the cancer WILL come back.
- He said that the combination of prescriptions that I am on do not do well with Gleevec.  We would have to change some things.  Gleevec does not do well with my anti-coagulant medicine (blood-thinners).  I also would have to stop taking acetaminophen and vicodin.  They are not sure about my hormone medicine (Tamoxifen).
- He told me several times how happy he was that I was referred to him.  He told me I was a fascinating case because of the rare combination of health problems I have.  He has also ordered some genetic testing....he wants to learn more about my tumor.
- He said if I do not go back on Gleevec I need to have CT scans every 3-6 months to watch for recurrence.  He said I was taking a risk not going back on it.....But, if the GIST comes back I would just go back on Gleevec and most likely they would catch it in time.....but it still was a risk. He wanted to know how I tolerated Gleevec.  I told him I got used to it, but the side effects are not fun.  I would get horrible leg cramps, it made me slightly anemic, my stomach was always bloated/distended, upset stomach, I would wake up with puffy eyes, headaches, fatigue, legs would get swollen, etc.  But, I always had the attitude that the side effects were worth it.  The drug also costs about 6 grand a month......pretty CRAZY!!!
-  He said it was silly for me to come to him for checkups since I live an hour away, BUT he said that if my GIST ever does come back he wants me to come back to him for treatment.  He also told me to call or email him ANYTIME with questions.
- The first group of clinical trial patients have been on it for 13 years, so he knows it is safe to take for 13 years.  He does not know if it is safe to take for the next 40 years of my life, but he said I might be on it my whole life, or at least until there is even a better treatment and/or permanent cure
- If I decide to go back on Gleevec he said I should have frequent echocardiograms to make sure it is not damaging my heart.  He also said I need to have CT scans every 3-6 months even while on Gleevec.  Sometimes Gleevec will stop working on patients.  He also recommended I go to a cardiologist to discuss if he felt I had heart damage and if it could be due to Gleevec.
- He also wanted to know how I felt about not going back on it.  I told him it made me slightly nervous.  I didn't always want to be wondering if there were tumors growing in my body.  But, I was also worried about permanent heart damage.

After all was said and done (we talked for an hour) he felt I should go back on Gleevec.  He really thinks I have an extremely BIG chance of the GIST coming back.  But, he said he could respect the decision to not go back on it....The side effects can be overwhelming.  He told me to think about it for a few days.  I have been off Gleevec for 5 months.  He told me if I am going to go back on it to go back on it right away since I am almost to the 6 month mark where lots of patients recurred.  .

AAARGH......I do not know what to do.  I got another echocardiogram today.  Maybe the results of that will help me make my decision.
What to do....what to do?????????????????????????????????????????????????????????????????????