Dear Pat,
Been there done that! I tolerated 400 mg, felt lousy with 600 and was plain
old miserable with 800 and the 800 mg didn't hold the disease back.
Thanks to some of the fantastic people in this group, I did try a trial drug
and It worked. As you have probably been reading from the Ash Conference,
Gleevec opened the door for these new CML fighting drugs.
I am in trial with BMS 354825; no side effects and my counts are low but as
stable as can be hoped for. The AMN107 trial, according to the people I
have met in MD Anderson, are having the same results.
Please keep the faith and be miserable (horrible thing to wish on someone)
as these new drugs are going to go phase two in a few months. There is a
light at the end of our tunnel and it is not a train!
Keep the faith!
Bob
dx 01/00
Gleveec 400 mg 5/01
600 mg 5/03
800 mg 5/04
BMS 354825 50 mg 06/04
----- Original Message -----
From: "pat reynolds" <[EMAIL PROTECTED]>
To: <[EMAIL PROTECTED]>
Sent: Tuesday, December 07, 2004 12:06 PM
Subject: [CML] Living With Gleevec
>
> I thought I would share with you my call from my
> oncologist which came a day after I complained about
> how miserable I am on the 600mg. Well if I'm not
> miserable enough on the 600mg, he says he is
> increasing my dosage to 800mg immeediately as my pcr
> test from last month came back, and my numbers
> increased from 767 out of 100,000 in Sept to 1,368 out
> of 100,000 in Nov. I knew I had been feeling worse and
> having bad headaches every day just as I did before I
> was dx'd. I do skip taking the gleevec occassionally,
> maybe once a month but I didn't think it would make
> that much of a difference. I am so upset, and so
> scared. Just the thought of having to take 800mg, I
> know I am going to be even more miserable. I just have
> this gut feeling that I am going to suffer miserably
> from the meds and then lose the battle anyway. I am so
> overwhelmed with fear and frustraion. Jennifer, after
> this conversation with the oncologist, I don't
> personally advise for you to not take recommended
> dosage. It's not working out for me. I would
> appreciate your prayers and any suggestions that might
> would relieve any of the side effects. I also want to
> mention I am not a big water drinker, never have been
> but do try to take with my meds, should I try to drink
> more? I was a smoker, and have been quit for 9 months,
> and never got over the cravings.....it's with me every
> day, I just smoked 2 as my nerves are shattered. I'm
> sure that will help. It took me 3 months before to
> quit, and I did ask my oncologist if this would affect
> the effect of gleevec and he said no, but wanted me to
> quit so as to prepare myself for BMT which I have
> refused since then. Please think of me in your
> prayers. Love, Peace & Hope, Pat
>
>
>
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