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Take my name off.
----- Original Message -----
Sent: Tuesday, May 31, 2005 12:50
PM
Subject: Re: [CML] Re: increased heart
rate
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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