Re: [CML] Re: increased heart rate

Mon, 30 May 2005 12:52:38 -0700

My doctor checked into one in Nashville and I didn't qualify.

Rob <[EMAIL PROTECTED]> wrote:
The AMN and BMS trials are another option you might want to look at too.
 
Rob
----- Original Message -----
Sent: Sunday, May 29, 2005 10:23 PM
Subject: Re: [CML] Re: increased heart rate

Pat
Yes, you have warned me of the problems you experienced at Vandy and of transplant doctors at Vandy, and I understand your concern. I thanked you for your care and concern when you first emailed me, and I beleive that I returned a reply to let you know that for me I am perfectly happy with the care this doctor is giving me. She is not pushing me into anything. Yes, she does feel that a transplant is my best option, however, I informed her of my concerns and the fact that none of my 5 siblings match me. She is my second opinion and I love the care she gives me, which, is far better than my first doctor. She means I am not tolerating the Gleevec because of how severe my side effects are. The severity of the side effects have not susbised since I began to have them. On the positive side she is really happy with the decrease in the PH since my previous doc would drop my dose down to 200 for a month at a time to try and help ease the side effects. That did not even work. I still sufferred the side effects. Due to this she feels that I do not tolerate Gleevec very well. So, I can only go by my experience and the care that I receive from this doctor which far exceeds my first one and she discuss my progress, side effects, etc with me instead of saying your CML is under control due to your WBC is normal. Please do not take this as an attack because I look forward to support as we all do from these sites.
Suzan

Patricia <[EMAIL PROTECTED]> wrote:
--- 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
>
>
> __________________________________________________
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