Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 , Another suggestion would be to direct her to the Leukemia Lymphoma Society Chat Board's Bone Marrow Transplant page. There is the full gamut of folks on there with all sorts of stories--some are quite sobering. A transplant is an absolute pure battle. Good luck to you with that conversation! I can totally understand the mindset of going for a " cure " ...but in our world the options we have are so much better! Beth [ ] - BMT Â > > Hello everyone, > > > > I am so glad I made that post yesterday. I wasn't looking for a response at all. I was just trying to let someone else know what my family went through/is going through. 's doctor seems to be taking a stalling tactic hoping will change her mind rather than refusing the BMT. has already had at least one consultation with a BMT team. I will surely send all of your replies to her and try to convince her to let the Gleevic do its thing. I have already tried convincing her to stay on the Gleevic, but not with much luck. Maybe after she sees everyone elses posts she will reconsider. > > > > Thanks alot to everyone for your concerns and very helpful advice. > > ________________________ Hi , Knowledge is power..... She should consult with more than one BMT team (Seattle is the best) and specifically ask: what is your survival rate? for one year? for 5 years? in my age group for my dx; what are the possible graft vs host problems that came come up post BMT?; how long are you on medications for the transplant post BMT?; The problem with some BMT centers and the advice that they give is that that is their bread and butter and how they make their money (a BMT will cost in the neighborhood of $300,000 without complications.) The HUTCH in Seattle, the best transplant center in the US if not the world, now recommends that CML patients try the drugs before considering a BMT and if the drugs are working, a BMT is not indicated. It is nice to have sibling matches (keep them in your back pocket if needed).....but sometimes these transplants are not as successful because the match is too close and the new immune system does not kill off all the cml cells. These patients relapse at some time post BMT, and then they are back on Gleevec! I know of 2 such patients on the cml lists. The possible post-BMT graft vs host problems can be significant and many. After a transplant, you may be leukemia-free but you can have many debilitating problems related to having the transplant. Like sterility. There is a 20 year old boy who had his transplant (which was recommended by a specialist at the time because of his response to Gleevec, the only drug available then)....he was treated with prednisone for problems after the transplant and the prednisone destroyed some of his bone (avascular necrosis) and he has had surgeries on both knees and now may need surgery on his wrist. I can imagine that at 19, it can sound story-book to have your sister give you her marrow and cure you of leukemia.....but it is most often not that simple. Your daughter needs to sit down with a BMT team that will spell out honestly and clearly what problems could lie ahead. Her local oncologist is not able to paint that picture. AND she can read some of the accounts of people as they went through a transplant and see how it went. I was dx 11 years ago when the choices for treatment were few....interferon or BMT...then Gleevec came and changed the whole picture. My early friends who have not survived have mainly been the ones that went the BMT route, either by choice or out of necessity. One good friend contemplating a BMT (of out necessity...because the only drug was not working for her) said to me: " we know more people who died of a BMT than from CML " .......unfortunately she did not survive her BMT (she never really even got back home) and left a husband and 2 young children. She needs to have the full picture....and not just wishful thinking. We all want to be cured.....but right now, for most of us the meds are the best option. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 Hey : I am suprised they even put that on the table as an option at this stage. Though usually the doctors will lean toward transplant with a younger paitent. I was told at least a year evaulation would be needed to assess how the gleveec and other drugs would work before leaning toward transplant consideration. I am surviving my BMT for CML but it has it's own set of horrific issues. I was a MUD transplant, and it seems strange to say this but I saw alot of sister/brother matches have many, many more and severe issues with their transplant than I did. I don't think because it is a family match it makes it an easier go of it. My experiences by watching others and myself says no. It actually seemed that a family matched transplant had a worse time recovering, with GVHD and overall survival. Just a thought. Do not step into this lightly! Prayers and best wishes, Therese From: hey00nanc <ncogan@...> Subject: [ ] - BMT Date: Wednesday, November 4, 2009, 2:59 PM > > Hello everyone, > > > > I am so glad I made that post yesterday. I wasn't looking for a response at all. I was just trying to let someone else know what my family went through/is going through. 's doctor seems to be taking a stalling tactic hoping will change her mind rather than refusing the BMT. has already had at least one consultation with a BMT team. I will surely send all of your replies to her and try to convince her to let the Gleevic do its thing. I have already tried convincing her to stay on the Gleevic, but not with much luck. Maybe after she sees everyone elses posts she will reconsider. > > > > Thanks alot to everyone for your concerns and very helpful advice. > > ____________ _________ ___ Hi , Knowledge is power..... She should consult with more than one BMT team (Seattle is the best) and specifically ask: what is your survival rate? for one year? for 5 years? in my age group for my dx; what are the possible graft vs host problems that came come up post BMT?; how long are you on medications for the transplant post BMT?; The problem with some BMT centers and the advice that they give is that that is their bread and butter and how they make their money (a BMT will cost in the neighborhood of $300,000 without complications. ) The HUTCH in Seattle, the best transplant center in the US if not the world, now recommends that CML patients try the drugs before considering a BMT and if the drugs are working, a BMT is not indicated. It is nice to have sibling matches (keep them in your back pocket if needed)..... but sometimes these transplants are not as successful because the match is too close and the new immune system does not kill off all the cml cells. These patients relapse at some time post BMT, and then they are back on Gleevec! I know of 2 such patients on the cml lists. The possible post-BMT graft vs host problems can be significant and many. After a transplant, you may be leukemia-free but you can have many debilitating problems related to having the transplant. Like sterility. There is a 20 year old boy who had his transplant (which was recommended by a specialist at the time because of his response to Gleevec, the only drug available then)....he was treated with prednisone for problems after the transplant and the prednisone destroyed some of his bone (avascular necrosis) and he has had surgeries on both knees and now may need surgery on his wrist. I can imagine that at 19, it can sound story-book to have your sister give you her marrow and cure you of leukemia.... .but it is most often not that simple. Your daughter needs to sit down with a BMT team that will spell out honestly and clearly what problems could lie ahead. Her local oncologist is not able to paint that picture. AND she can read some of the accounts of people as they went through a transplant and see how it went. I was dx 11 years ago when the choices for treatment were few....interferon or BMT...then Gleevec came and changed the whole picture. My early friends who have not survived have mainly been the ones that went the BMT route, either by choice or out of necessity. One good friend contemplating a BMT (of out necessity... because the only drug was not working for her) said to me: " we know more people who died of a BMT than from CML " .......unfortun ately she did not survive her BMT (she never really even got back home) and left a husband and 2 young children. She needs to have the full picture....and not just wishful thinking. We all want to be cured.....but right now, for most of us the meds are the best option. C. Quote Link to comment Share on other sites More sharing options...
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