Re: Re: 's vacation from Gleevec

[Guest guest]

There have been studies on discontinuing gleevec for long term pcru

patients for a few years now. In France the trial is called STIM (for

STop IMatinib), the dr I see when I visit family in Paris once a year

has cosigned a paper on that. She mentioned it when I saw her in 2006

but I never reached pcru and don't want to increase my 400mg dose.

More information at

http://www.cmlsupport.org.uk/?q=node/978

Marcos.

On Sun, Jan 25, 2009 at 7:51 PM, dickie_64012 <dickie_64012@...> wrote:

> Thanks for the reply. My ONC and I discussed about being a subjest

> of 1 to see if this is a viable procedure for some. He was a

> researcher while receiving his certifications for his specialties.

> I have not ask if he is writing up what is happening, but do know

> that all we are doing is being reviewed by Dr.s associated with

> MD. At least the protocal is being reviewed and updated

> although a study of one usually doesn't receive much notice but maybe

> somewhere sometime another Doctor will remember reading this and try

> it again. No medicine is best of course but no one should attempt

> this without being monitored by their ONC and maybe be lucky enought

> to have 2 as I do.

>

> H.

>

>

>>

>> Gosh, , you should be in the Gleevec's book of records. I

> know everyone else will also be crossing their fingers that it will

> be permanent. I think they have several trials initiated to test the

> effectiveness of long term Gleevec patients by allowing them to stop

> taking it so see if their counts remain in the normal range and they

> continue to be PCRU. Could this be the future trend for some?

>>

>> Does your doctor send your information to a tumor bank to follow

> your progress? Our hospital has a tumor bank to record all cancers

> and all str recorded in a national cancer data bank. I suppose it is

> also used to track the places were most cancers are reported. Since

> CML is a liquid tumor, I would have to assume that this cohart of

> patients are included. I'm sure it took a giant leap of faith to

> agree to do this and I applaud you for doing it. Thanks for sharing

> this part of your life with us.

>>

>> Blessings and a good measure of peace and hope,

>> Lottie

>>

>>