Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Dear , After some consulting with CML specialists, I hope your daughter has a change of heart. Having a BMT is a lot more serious than taking Gleevec. We have many here who are a testament to how to live with CML and how we beat the odds. This is a last resort and nothing to reckon with. Tracey, Zavie and the others who have responded to you are giving you the benefit of their knowledge about BMT. It is only to be considered if you have a life or death situation. Any CML specialist who is worth his salt would agree that your daughter has not reached the point of last resort. She should know everything and every step taken on this journey before making such an important decision, it is not to be taken lightly. I lost 2 friends to a BMT, and others I only met briefly who appeared to be well and in remission when I met them, and 2 weeks later succumbed to the disease. There are no guarantees in life and at this point, BMT is not the be all for CML I hope you will take all of our collective thoughts as a sign of respect for your feelings, but also as a sign of love from all fellow CMLers. Hands & hearts, Lottie Duthu Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 Lottie is correct. A BMT is what you do when nothing else works, it's the last chance at life! Why, it is very dangerous. If you have read Dr. Druker's interview, he points out that between 25 and 50 percent of BMT patients die in the first year. FYI, if you are new here you may not know that most of us think about Dr. Druker as a GOD and THE authority on CML and Gleevec. But, back to your daughter. Your daughter may have some unpleasant side effects on Gleevec, as a young person that can seem the end of the world. But many of those, if not all, will go away with time. The odds of staying alive with Gleevec are much, much better. And, with a BMT, you might point out to her that even if she survives, she will have a long isolation period because she will have ZERO immune system protection. I am certain that there will be a cure, especially within her lifetime, if not mine (I'm 65). Gleevec and the other new drugs have given us a chance to hold on with dignity and a relatively normal life. Love and best wishes, Troxel On Tue, Nov 3, 2009 at 12:45 PM, Lottie Duthu <lotajam@...> wrote: > > > Dear , > After some consulting with CML specialists, I hope your daughter has a > change of heart. Having a BMT is a lot more serious than taking Gleevec. We > have many here who are a testament to how to live with CML and how we beat > the odds. This is a last resort and nothing to reckon with. Tracey, Zavie > and the others who have responded to you are giving you the benefit of their > knowledge about BMT. It is only to be considered if you have a life or death > situation. Any CML specialist who is worth his salt would agree that your > daughter has not reached the point of last resort. She should know > everything and every step taken on this journey before making such an > important decision, it is not to be taken lightly. I lost 2 friends to a > BMT, and others I only met briefly who appeared to be well and in remission > when I met them, and 2 weeks later succumbed to the disease. There are no > guarantees in life and at this point, BMT is not the be all for CML I hope > you will take all of our collective thoughts as a sign of respect for your > feelings, but also as a sign of love from all fellow CMLers. > Hands & hearts, > Lottie Duthu > > Hands & hearts, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 Cml has come so far in the last ten years since my dx, I believe a cure may be around the corner. A bmt can lead to more drugs, not less. It shouldn't be entered into lightly, especially for someone who is having a good response. Sent from my iPhone On Nov 3, 2009, at 7:27 PM, Troxel <richard.troxel@...> wrote: Lottie is correct. A BMT is what you do when nothing else works, it's the last chance at life! Why, it is very dangerous. If you have read Dr. Druker's interview, he points out that between 25 and 50 percent of BMT patients die in the first year. FYI, if you are new here you may not know that most of us think about Dr. Druker as a GOD and THE authority on CML and Gleevec. But, back to your daughter. Your daughter may have some unpleasant side effects on Gleevec, as a young person that can seem the end of the world. But many of those, if not all, will go away with time. The odds of staying alive with Gleevec are much, much better. And, with a BMT, you might point out to her that even if she survives, she will have a long isolation period because she will have ZERO immune system protection. I am certain that there will be a cure, especially within her lifetime, if not mine (I'm 65). Gleevec and the other new drugs have given us a chance to hold on with dignity and a relatively normal life. Love and best wishes, Troxel On Tue, Nov 3, 2009 at 12:45 PM, Lottie Duthu <lotajam@...> wrote: > > > Dear , > After some consulting with CML specialists, I hope your daughter has a > change of heart. Having a BMT is a lot more serious than taking Gleevec. We > have many here who are a testament to how to live with CML and how we beat > the odds. This is a last resort and nothing to reckon with. Tracey, Zavie > and the others who have responded to you are giving you the benefit of their > knowledge about BMT. It is only to be considered if you have a life or death > situation. Any CML specialist who is worth his salt would agree that your > daughter has not reached the point of last resort. She should know > everything and every step taken on this journey before making such an > important decision, it is not to be taken lightly. I lost 2 friends to a > BMT, and others I only met briefly who appeared to be well and in remission > when I met them, and 2 weeks later succumbed to the disease. There are no > guarantees in life and at this point, BMT is not the be all for CML I hope > you will take all of our collective thoughts as a sign of respect for your > feelings, but also as a sign of love from all fellow CMLers. > Hands & hearts, > Lottie Duthu > > Hands & hearts, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2010 Report Share Posted September 27, 2010 Please can you give me the name of her care page? Thanks, Barbara > > > > No , it is an email from today. Maybe I misunderstood that she didn't get the BMT yet, she was talking about the chemo, which precludes the BMT. I never was able to get on that Care page. She would have been better off going to Caringbridge, I think. > > xoxo > > Lottie > _____________________________ > > Yes, Lottie, she is post transplant day #8 and is actually doing quite well as these things go...especially tolerating some solid food and walking daily. She is on some anti-rejection drugs that are causing some nausea and other issues. > > I had a hard time at first getting her CarePage but now that I am on it, they sent me a daily post with a link that I can just click on and I go right to her update. So, you might try it again....once you get connected, the system works very well. > > C. > Quote Link to comment Share on other sites More sharing options...
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