Re: Re: 17 years A

[Guest guest]

Hi Judy:  I thought your journey was so amazing.  I thought you were probably

on something at this point.  If you can tolerate the Gleevec well, then I would

stay on it to keep the PCRU.  I was diagnosed in 1998, and went through all the

visits planning a BMT.  I had no match, therefore, I chose not to go with a

unrelated donor.  I was in the clinical trial for the Gleevec, and I still to

this day think I made a good choice for ME!  I am on 400mg. since day one

which was Oct. of 2000.  Thank You for Sharing that with me and anyone else who

it might help.

A.

From: Judy T <judy_telford@...>

Subject: [ ] Re: 17 years A

Date: Saturday, March 27, 2010, 3:25 AM

 

Hi

Sorry I did make the message a bit vague. After I relapsed I started on 400 mg

of Glivec. I had a good response, but my counts crashed so I had to stop for 6

weeks. When I started again, I took 400mg every other day for a few weeks, then

went back on Glivec 400mg. Again my counts crashed, but this time they recovered

without having to stop Glivec. I then had a bumpy ride for awhile, with pcr

tests getting to zero but bouncing around a bit. I then had some DLI's to see if

that would get me to zero and at the same time my oncologist increased my Glivec

to 600mg. The combination of these two measures achieved the desired response

and I did get to 0.00%. So for the past 2 years I have been all zero's except

for a couple of tests where I was slightly positive, but not enough to record a

%. As of this moment I am pcru and at the stage where there is some talk of

stopping Glivec. I'm not keen to stop, but will make a decision when it is put

to me. As far as the

transplant is concerned I did not require any medications after about 6 months.

Hope that answers your questions, if not feel free to ask anything I may have

missed.

Judy T

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> > > I dont post often but I have something to celebrate tomorrow.  tomorrow

it will be 17 years since my bone marrow transplant.  I was diagnosed in 1992,

had the bmt on March 26th 1993, 2 days before my 41st birthday and relapsed in

2004.  So this weekend I am celebrating LIFE with my family, husband, 4

children with 4 partners now and 5 grandchildren.  I've been in hospital for

the past few days with a prolapsed disc in my neck.  It is resolving so I am

home and pain free tonight, so this weekend is going to be great. 

> > > judy Telford

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