Re: BMT or BMS trial?-Debra

[Guest guest]

In a message dated 3/17/2005 1:22:13 A.M. Eastern Standard Time,

ncogan@... writes:

The onc there said absolutely

>no more Gleevec. And that my choices are maybe to get on the BMS

>study. Which will start mid april in St Louis. Or have a BMT which

>they are presently testing my siblings for a match. The Onc was

Debra, I wish I could help you, because I am facing some of the same

decisions as you are, although it is not the liver that is causing my problems

with

Gleevec. My current oncologist is pushing me towards BMT and I tried to

redirect his thinking when I realized BMS drug might be an option. BMT takes an

incredible leap of faith in my mind. But then I talk to people who have had

parents/brothers/friends go through one and they just shrug and say, " He's

doing great now, it's been 5 years and he never misses a days' work, " things

like

that and I ask myself if I am being overly pessimistic when it comes to

making that decision.

I don't know. I do know that when my doctor said " NO MORE GLEEVEC " a month

ago, in one way I was elated to be able to put aside the worsening side

effects, but on the other hand, I read what he wrote in my medical records,

" Told

patient that relapse could be possible within 6 weeks to 13 months after

discontinuing IM therapy. " and freaked out. I am aware that he is covering

himself by writing that and it is really such an individual thing as to when

and

how a patient would relapse if left untreated. So, I back on Gleevec of my own

volition and in the meantime scrambling to find alternative treatment. I

have one problem. Two years ago I was biopsied for a lump in my left breast and

a marker (chip) was left in to follow the progress of said lump. I neglected

to get a mammogram last year (my own choice) and now I have a little problem.

The lump has grown and is now causing problems. I have testing set up within

a few weeks, but it just so happens to be around the time I go to see about

BMS trial. I am hoping this lump is nothing..wishful thinking, positive

thinking (which is why I have ignored it thus far.)

My purpose in writing to you is regarding the history of breast cancer you

wrote about. You had a lumpectomy? This is what I am looking at in terms of

possible participation in future trials. I want to have as much information as

I can. I know I'll get it on April 5 when I meet at Dana Farber with Dr.

Stone about the BMS trial protocol and qualifications, but in the meantime I

would like to know why this would prevent your participation in the trial. I did

not see the whole email only an excerpt of it that you wrote ... your onc.

was unsure if you would qualify. If you have any further information regarding

this would you be so kind as to share it with me when and if you hear from

your oncologist?

I know I may be premature but just want to get ready for anything/everything.

I do hope your liver problem can be resolved, and as C. wrote, we have

a member who went through all of that and was successful. She fought a long

time to get it under control but she did it.

You are not alone in having to make these decisions. There are so many of us

out here in limbo.....I know I probably have not helped you any but wanted to

let you know that I am in similar straights. Praying for you, Lynne A.