--- In [email protected], Suzan Collins <[EMAIL PROTECTED]> wrote: > Suzan, I have emailed you in the past to tell you of my experience with Vanderbilt. I looked on Vandy's website for your doctor and if you have a female doctor, she is primarily a transplant doctor. I also saw a doctor there for over a year who was a transplant doctor and kept telling me I was not even responding to the Gleevec. However, after seeing another doctor, a CML specialist at Vanderbilt in Feb this year, I learned I was near complete remission. Transplant doctors push for transplant. What does she mean you are not tolerating Gleevec? We all have side effects of Gleevec, especially myself but it is working and I just deal with the side effects with the help of other medications. Most people, there side effects seem to subside with time. I still suffer with them myself but they are not near the severity they were. Don't let this doctor talk you into tranplant if it is not needed or unless it is what you want to do. I'm not trying to pry in your business but I had a horrible experience and I'm just trying to warn you. You are entitled to a second opinion and should be from a CML specialist. I hope you understand my concern. Love, Peace, Hope & Prayers, Pat > Hello all it has been awhile since my last post. Just to recap how my last year and a half have been I will try to be as brief as possible to catch any one up to speed. Last year in Feb my son-in-law and son both were in Iraq, my work (locked up facility for juvies) was very stressful, I got sick, and was getting divorced after 32 years (my retired army and didn't want to be married any more). I contiuned to stay sick from the middle of Feb until finally after being so sick I could not even get out of bed and the doctor had me on several antibotics trying to get me well. He decided to do a blood test on June 1, 2004 and I was told by him on the 3rd that he thought I had leukemia. My blood count was 169,000 and on the 4th it had gone up to 226,000. I was 98 % positive PH. All of this at age 50. Of course as everyone knows I was put in the hospital immediately and began taking hydrea. The middle of June I began Gleevec 400mg and started having problems with side effects the end of > August when I went back to work. Sick, fatigued, severe joint pain, severe muscle spasms, memory word recall problems. I contiuned to work until Jan 1, 2005 when I could no longer push myself. Between the side effects and the stress of the job I hit rock bottom, it was killing me. Today I contiune to fight all of these side effects. Some days or not as bad as others and the good days are less than the bad. The doctor I had in Texas would not listen to me, just say my WBC was fine, and when I read the records from him, he never documented that I was having problems with the side effects. I know the Lord never gives us more of a burden than we can carry, but THERE were times last year that I asked Lord do you think my shoulders are getting a little heavy. > > I moved to TN this year and live with my daughter. The doctor I see at Vanderbuilt is wonderful. She filled out my paperwork and I was approved for Long Term Disability through my work. She recognize, discuss, treats, and documents the continued problems with side effects from the Gleevec. She stated that even though I'm down to 3 % positive for PH, that I just do not tolerate Gleevec. None of my 5 siblings match me, so they are going to do a national search for a possible match. So far now I contiune to take Gleevec until one day they find a match or one of the newer drugs gets approved. > > I will take the side effects any day of the week, and hope to have a better year this year. The Lord is with me daily and in December he gave me a dream with a rainbow in the sky. As long as I have the Lord all is well, my life is in his hands. > > Suzan > > > __________________________________________________ > Do You Yahoo!? > Tired of spam? Yahoo! Mail has the best spam protection around > http://mail.yahoo.com
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