I haven't posted to the site for sometime but read it quite often. You are such a great group of people with a wealth of knowledge. I appreciate each and everyone of you. I am amember of a few sites, so If you visit those sites you might see the same post. It's so long I didn't want to keep rewriting it -- I'm still lazy at times...
I thought I would post an update since I just passed my 3 year post-transplant date, October 5, 2004.
A little history....I was diagnosed in August of 2002 and was still in the chronic phase, although the doctor thinks I probably was in my 2nd year of the disease. I don't know how he could really tell that except from the symptoms I was having the prior two years, ie, tired all the time.
I started taking 800mg of glivec in early September of 2002. My WBC returned to normal from 87K at diagnosis. Other than the standard side effects, eyes swelling, nausea at times, etc., I was in remission with a minimal PCR of approximately .014. After about 18 months, my PCR started to climb dramatically and glivice lost its effectiveness. I continued taking glivec until I could find an alternative, although it wasn't working very well for me. I was rapidly approaching the blast crisis phase.
My doctor recommended that I have find a cancer center of excellence and get checked out, preferably one that was very familiar with CML. I decided on MD Anderson, and after a couple of months of fight with my insurance, I finally showed up on their doorstep.
After I arrived in July of 2004, I was assigned to Dr Kantargian at the Leukemia clinic for evaluation. After testing, it was determined that I had entered the blast phase and something needed to be done right now. He recommended a BMT but said that unless he could return me to the chronic phase that it would be fruitless. So he recommended that I go into one of the two trials that were going on at the time. the BMS and AMN trials were both in phase two, and were having some early success. I couldn't get into the BMS trial for six weeks because of the waiting list. Dr Kantargian was running the AMN trial so he placed me into that one almost immediately. No one knew what dosage to use at the beginning since the trial was so new so we started out at a very low dose to just see if I would respond.
Within one week my blasts were rapidly reducing. After three weeks I was at zero. The drug worked and had returned me to the chronic phase -- where I needed to be for the transplant. While I was going through this trial my siblings were tested to see if I had a match. My younger sister was and exact match so the BMT clinic proceeded to make all the arrangements to perform the transplant in early October 2004.
I had the transplant on October 5, 2004 and everything went as smooth as it could. Of course I had numerous ups and downs the first 100 days, acute gvhd of the skin and liver. These were both beat back with the anti-rejection drub and finally subsided.
I returned home in January 2005 with a PCR that was undetectable and 100 per cent donor. I was weak but happy.
In early March of 2006 my PCRs started coming back with some positivity, although at a very low level it was very worrisome for me. Later that month I was exhibiting some tumor growth in my abdomen and lower extremities. Some of the tumors were removed and sent to MD Anderson for a biopsy. It turns out that the CML was back and had tumorized, although my PCR was still at a very low level, the tumors were growing out of control.
The choices at that point were to have another BMT or wait for the approval of Sprycel in June of 2006 to see if that would work. I wanted no part of another transplant unless that was my only option so I started taking Sprycel in June 2006. Within three weeks the tumors disappeared and were not detectable by a PET scan...miraculous. My local oncologist was simply blown away with the rapid results, and so was I.
I have been checked quarterly by either a BMB or PBPCR and PET scan, and have been undetectable by both since.
Although I still suffer somewhat from the side effects of Sprycel and chronic GVHD of the skin, eyes and mouth, I am very happy just to be here
There are some doctors who are very familiar with Sprycel that think that I could probably stop taking it since my immune system has grown to be much stronger and appears to be very active since I still have chronic GVHD. I'm just not brave enough to make that step right now, maybe some day.
I am head to Houston on the 4th of November for a three year post-transplant checkup. I also will visit the Optho and the GVHD doctor to see if I can find a better way to treat this disease. I hear they might have some new treatment protocols -- sure hope so.
All in all, I'm extremely blessed to be here today and just wanted to share this story with all of you to let you know that there is always hope. Just keep on keeping on....
The very best to all of you,