therese Re: [CML] What do I do now?

Sun, 27 Nov 2005 16:36:18 -0800

hi therese, just wanted to mention that I am seing dr. smith at JHU Baltimore too.  he is a great doctor and you are the first one who mentioned him since i have been a member of this group.  i am glad you are in his hands,
livia
Therese Stone <[EMAIL PROTECTED]> wrote:
Hey Germaine:
 
It is a huge decision, and I still don't know the half of it yet.  I was DX 4/2005 and Gleevec is not working for me.  Still far from remission.  I had another BMB on 11/17 will get the results in a couple of weeks.  I had to switch to my third onc due to the others not really knowing CML.  This one seems really compentent.  I do have sibs and had all eight of them tested and did not match any on of them.  I was very discourged until this morning, I got a call from Nothside Hospital ( in Atlanta) and was told I have numerous prelim matches in the National Registry.  You can be a MUD, matched unrelated donor.
 
  I live in Stockbridge, GA and my new onc said she usually refers her patients to Emory.  I had already been seen at Northside so I am set up over at their facility.  I know this is not the easy road, but Gleevec is working well enough to hold my blood counts for know but the last biopsy I was at 45% P chromosomes.  I spoke to a  Doctor Smith at Johns Hopkins in Baltimore,MD and he had a few spots open for a trial that was closing soon, it was the AMN107 trial.  One of the requirements was to have been DX for over a year, maybe look into that too.  Good Luck to you finding an answer, I am searching for the same holy grail myself.  Stay in touch. 
 
Therese Stone 

germaine_bengston <[EMAIL PROTECTED]> wrote:
Hello Everyone,

     I have been a quite member of this board since I was diagnosed
October 2003. I have always looked to the board to help with questions
I may have. Here is my story....
     I was diagnosed in 2003 with cml philadelphia positive. I was put
on Gleevec 400 mg right away. In May of 04 the doc upped my Gleevec to
800mg. I have had bone marrow biopsies every 6 months. Well my last
bmb was on Nov 2. The results were that there was no evidence of the
leukemia except for the philadelphia chromosone. Now I am wondering
what do I do now?  I have been on Gleevec for 2 years and haven't hit
remission, so I wonder if I ever will.  I asked my doc if a bmt would
help me hit remission. I have an appointment on Dec 5. I have no idea
what questions to ask. I am not that fluent in all the terms of
leukemia, so can anyone help me. My family doesn't think a bmt is what
I need they think that since the gleevec is working to an extent,
there theory is why mess with a good thing. But how come I haven't hit
remission yet?  I am sooo tired of sitting in limbo. I just feel like
I have to explore all my options. Does that make sense?  I live in
Brunswick Georgia and my appt is with Emory Hospital in Atlanta. The
doctor said i need to have a bunch of questions to ask the specialist.
But I am not sure what I need to ask.
I have no siblings. I know that is important. What should I do?

Thank you to everyone for the guidance I have recieved, I look forward
to any advice anyone has to give.

Thanks,
Germaine
age 28
dxd oct 2003
gleevec 800mg









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