Refractory CML patients

December 21, 2009

Dear Moe,

It is unfortunate that your friend is now refractory, but that doesn't mean

the end of the road. They continue to treat patients with Gleevec and also go

back to the original donor and infuse the patient with their cells once again,

called DLI. This usually works, but if CML does reoccur, these new TKI's can

still prolong their lives. I have met several people who are living on Gleevec

years after their relapse. One friend didn't want to go on Gleevec because she

didn't like the way my eyes looked. She insisted on treating herself and she is

no longer alive today. I would ask Judy Telford to respond to this, as she is

the expert in the group on DLI's. She experienced it and is back in remission.

Tell your friend not to give up or give in, there are solutions available. My

best to your friend.

December 23, 2009

>

>Dear Moe

My transplant was in 1993, I had complete remission until 2004. At that point

my cml returned and I was quite ill for awhile. my doctor started me on Glivec,

but my counts dropped dramatically and i had to stop for around 6 weeks. When i

startd back my counts dropped again, but then began to rise. It took nearly 2

years to regain remission, during that time i have increased my dose from 400 to

600 mg of glivec and have had 1 D.L.I. from my brother. At the moment I am PCRU

and have been for 6 months. I have had 2 equivocal tests prior to be PCRU so

for about a year now no cml is detected. Am i back to complete remission, who

knows. I will continue to take Glivec for at least another 2 years then maybe

trial off it and see. I feel great, have 5 beautiful grand children and live a

full and happy life. Let me know if I can be of any help

Judy Telford Melbourne Australia

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