hey00nanc <[EMAIL PROTECTED]> wrote:
--- In [email protected], "decesareds" <[EMAIL PROTECTED]> wrote:
>
> Nancy,and friends who have been following our stories.....
> I just got the word from Dr. Talpaz and I must admit that I'm a bit
> disappointed. After visiting him, I felt so good. Now, I feel like
> a just got a kick in the butt! Only 5 of the 20 cells analyzed were
> negative which means resistance to Gleevec is definately a
> possibility. My molecular studies show a high level of disease,
also.
> He has suggested trying to take 800 mg. to see if it's a real issue
> of resistance. I will return in July. I guess I must seriously
start
> considering other options - BMS being 1st on my list. I would love
> to hear from others who have been down this road. I'm a bit shaken.
> Dianne
_____________
Dianne,
I am so sorry to hear about your latest results. I think that they
only way for there to be this big of turn-around in your results is
for you to have a mutation.
Personally, I think this calls for mutation testing ASAP so that you
do understand your options better. MDACC has not been real good it
seems for mutation testing 'on demand'. OHSU and UCLA seem to honest
this request better. I would not wait until July....and you know you
have not done great with 800mg in the past.
I have a friend who just returned from her follow-up with Dr. Druker.
She was recently tested for a mutation because her results jumped from
30% to 75% in ?? 6 months. He identified her mutation and just the
other day he was able to show her a chart of how much of a dose it
would take with IM, AMN and BMS to treat her.....this must be from the
lab.
Dianne, any chance you can consult with Dr. Druker? I know that you
could get in in a reasonable time...OHSU is in the boonies and not
swamped!!
Hang tough turtle girl.......one of the new drugs should be an answer
for you....but again, I would not just twiddle my thumbs until July.
Write me privately if you need more info.
Maui Nanc
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