Hello Marcie I tolerated Gleevac for 13 months, numbers were great. Then I experienced eye bleeds (severely bilateral blood shot eyes), and they were fearful the bleeds would occur in the brain, so, that stopped the Gleevac for me. I have never heard of the Ploop you mentioned. Good luck Marcie. Currently I am on no medication for CML, am awaiting Sprycel blood levels (stopped due to severe shortness of air). Mags
--- On Sun, 2/28/10, margoo...@aol.com <margoo...@aol.com> wrote: From: margoo...@aol.com <margoo...@aol.com> Subject: Re: [CMLHope] Re: Paying the donor of Bone Marrow To: cmlhope@googlegroups.com Date: Sunday, February 28, 2010, 6:28 PM This is Marcie from Baltimore. I was diagnosed March '09, started Gleevec and other than getting used to the side effects which have not been too bad, I have done well. That is until my January bloodwork when my hem/onc said that all of my numbers were slightly off. They ran the blood again early Feb and he told me that he was very unhappy with what he was seeing. I had reached a point where only 7% cancer cells were showing and now suddenly that doubled to 14%. I am waiting for results of new tests, one that has to do with something called "p loop" and my best understanding is that I may have developed Gleevec resistance. I have had of this but it seems like most people develop that years into it, not 11 months. My doc mentioned that, pending what the new blood results show, he may switch me to Tasigna. Has anyone else on this site developed resistance that quickly and does anyone understand the meaning of the p loop test? Thanks very much. -----Original Message----- From: Martin Gartenberg <wa2...@gmail.com> To: cmlhope@googlegroups.com Sent: Thu, Feb 25, 2010 9:19 pm Subject: Re: [CMLHope] Re: Paying the donor of Bone Marrow Hi Suzieq, Please forgive me for my error. In any event you read it and brought up some rather interesting questions. As you mentioned, you are doing well on Gleevec, and that is very good. A bone or stem cell transplant is like a life preserver on a sinking ship. While the ship is going down there are people trying to hang onto that life preserver, and no one really knows if there is another ship nearby to pick them out of the water. This should be the absolute last thing that someone wants to do especially if another therapy is working well. I am sorry to hear about your brother and he is probably still watching over you. Think about it as your doing well on the Gleevec, and not needing a transplant. I still think about my donor who unfortunately has passed away, but not from the marrow donation. The story would take me hours to explain, so I will just leave it at that... In the time I had my transplant the 6 out of 6 Human Leukocyte Antigen (HLA) match was considered a "perfect" match. Now there is a 10 out of ten HLA. Times have changed and so has the ways a transplant is given. How long ago were you dx'ed? Finally, as far as the immuno suppressive or anti rejection drugs, I had to take huge doses for the first year, then it tapered to nothing after that first year. So, in my case it was not a "for life" situation. However, since my kidneys are failing I will require another transplant probably within a year or so. Once this kidney transplant happens, I will then have to be on immuno suppressive drugs for the rest of my life. So, who ever said that life is fair, but I just roll with the punches. I often get asked about all that I went through, and I always answer by asking if every one put their troubles into a paper bag and left all of those bags in a pile then which one would I choose... MINE! GOD bless, Marty On Thu, Feb 25, 2010 at 2:17 PM, Suzieq <sheila.a.wat...@gmail.com> wrote: Marty: You've confused me with Russel who is the one who responded that he had the bone marrow transplant and was looking for ways to thank his donor. I still have the CML and on 400mgs of Gleevec which is keeping the CML at a very low range & I've done fine on it since being dx'ed in Jan. '04. As long as it is working, I have no thoughts of doing anything different. He is also the one who spoke of "selling to the highest bidder", not me. I only wrote the article I read in the paper. I have no qualms with the way they would like to pay.....I think it would be a commendable way of trying to generate more donors rather than just giving the donor money free and clear. I think this brings up some very good issues with those of us who might one day face this possibility of having a BMT as some of you have already had. And, Marty, you are so right about the 1 in 4 percent range of a sibling match. I have two older brothers...neither of which matched me. (smile) I told my husband that I felt pretty sure that my perfect match lies in the grave yard back where I'm from. He was an older brother who was hit by a car and killed at six years old (I wasn't quite 1 year old at that time). The National Registry found twenty four 6 for 6 matches to me back when I was first dx'ed. That was the best they could do........at that time, I didn't even know what that meant. And after reading up on how they did BMT's, I told my husband then that I would never want to put someone through that unless it was the last option I had. By the way, Marty, do you still have to take the "anti-rejection" medication? I was just wondering if that was a "for life" thing once it was done. Thanks, Suzieq -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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