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There are trials for each of the 3 phases so it is possible you might
qualify for one of the others.
Rob
----- Original Message -----
Sent: Monday, May 30, 2005 2:52 PM
Subject: Re: [CML] Re: increased heart
rate
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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