[CMLHope] Re: good news in houston

Thu, 22 Jun 2006 06:58:26 -0700

Cheryl-Anne, yes you remembered everything correctly.  I guess I am willing to live with side effects and other issues b/c MDA has done such a great job in keeping me healthy. 

I have been in remission for over a year and continue to teach, travel, etc.  I am so thankful for my life that I often times do not spend enough energy on asking the docs questions, so I just do what I am told! Being diagnosed at 27, in remission by 28- still in remission at 29 and on the waiting list for an adoptive baby is all I can think about at this point.

I sincerely trust MDA and my team of doctors and nurses.  I believe whole-heartedly they want me to live forever and are doing everything in their power to ensure that.

Thanks for the concerns, I will email the nurse and see what she says.

Allyson

From:  "Cheryl-Anne" <[EMAIL PROTECTED]>
Reply-To:  [email protected]
To:  "CMLHope" <[email protected]>
Subject:  [CMLHope] Re: good news in houston
Date:  Thu, 22 Jun 2006 03:21:05 -0700
>
>Hi Allyson,
>
>If I remember correctly, you are on 800mg of Gleevec and one weekly
>injection of peg interferon.  According to the latest data from the
>dasatinib trials and the opinion of some CML experts, the side effects
>of the 800mg of IM alone would cause the problems you are metnioning as
>far as digestive problems, and memory issues.  These might not be
>specifically linked to IFN.  In fact I know one patient who is on 800
>mg of IM as part of a trial and she has significant GI problems and
>memory issues and she never took IFN.  It just may be in your case, the
>doctors are prepared to drop the IFN to stay with IM because it has
>better longer term results?  I think this is the fundamental problem
>with the trial at MD Anderson.  Having people take 800mg of IM and IFN
>can get quite debilitating.  Especially in your case, if I remember
>correctly you got into this trial just after being dxed.  The point
>with IFN is that it is supposed to stimulate an immune response,
>overdosing either IM or IFN seems to greatly diminish our QOL without
>the potential to cure us.  You are very brave for doing this though.
>Hopefully, we have all learned something from this.
>
>Keep us posted,
>
>Cheers and warm wishes,
>Cheryl-Anne
>
>
>
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