Guest guest Posted March 28, 2010 Report Share Posted March 28, 2010 Hi Judy & , Your story inspires me. With two siblings as complete matches, it reassures me that if a BMT is the journey picked for me, and it should relapse, then Gleevec could help me once again. And it's patients like Judy that have tested that road and made it successful. God Bless you. Jackie S. ________________________________ From: Armour <suzzienovember@...> Sent: Sat, March 27, 2010 1:32:48 PM Subject: Re: [ ] Re: 17 years A 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. au> Subject: [ ] Re: 17 years A groups (DOT) com 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 > > > > > > 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 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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