Hey Mike,
I have certainly enjoyed your posts and the dialogue that has sprouted from it. Congratulations to you for coming through this and I wish you all the best of luck for your continued success. I worked with a young lady once upon a time who had underwent a BMT for AML. She did just fine. She was in her early twenties and in her second year of university when she was dxed. Her sister was a perfect match. While I hope I do not have to go through the nerve racking process of ever having to consider a SCT I do pay very close attention to the continued work and research that is going on in this area. I know that we will see the success rates of SCT's increase significantly in the future and that is good news for all of us. Can you imagine if the SCT procedure was so highly perfected that survival rates went as high as 95% in our life time? What would we do then? A life time of drugs and a life time of going every three months and nervously awaiting the results of our QPCR's versus a few years (well at least 5) of close follow up and then being declared "cured" for whatever that means. Sometimes being a chronic CMLer can be a bit of a burden: Numbers go up - increase the dose. Go back to stable - pick up the pieces go on with your life. Numbers go up - increase the dose again, or explore other trials. Side effect this month, no side effects next month, too cold, too tired. In your case it's GVHD or not, donor cell activity and long term effects from the procedure itself. But the coolest thing for you right now is (I am guessing) no drugs. You are completely on the mend. My girlfriend is a breast cancer survivor. She went through a few years of hell. Last year she finally ran a half marathon, she's almost back to her pre cancer self. I am so happy for her yet all the more mindful that it might not be something that I can experience. Oh well, one day at a time ;>) Sorry that you have to worry about all your medical expenses too! It always amazes me that when it comes to circumstances like this how somehow these expenses just can't be written off. We humans have made some pretty restrictive rules for ourselves. Yes we'll make you better but you will have to live a complete life of full blown poverty - hmmm, I wonder why? Cheers, Cheryl-Anne > > The Leukemia and Lymphoma chapter in your area can provide valuable ifo on BMTs. The patient services coordinator will help you!!! They can also provide some financial help and suggestions with respect to money if that is a concern. I still have bill collectors suing me....5 years later!!!!! But I am here...so screw them!!! ( pardon my language ) > > Just as an aside.....the total of my treatment...BMT start to finsh - over 1,000,000!!!! > > > Unbelievable!!! > > Hope to talk to you all soon!!! > Mike > > > hey00nanc <[EMAIL PROTECTED]> wrote: > > --- In [email protected], M <[EMAIL PROTECTED]> wrote: > > > Also, and I must be crazy....I wanted to go the more "curative" > route than the treatment route. Is Gleevac safe to take for 50+ > years?? My doctor said...."we have no idea". > > > > He did say that survival rates for a perfect match BMT in someone of > my age(24) and relative early stage of CML was better than 50%. > > > > I believed him. THank God I did. My point is that you should > explore all your options. If you do have a perfect 6/6 match...and > you are in the early stages of CML..and you are young......A BMT is > still your best chance of a "CURE" The long range side effects of > Gleevac are unknown. It just bothers me that people are only looking > for the next trial of a miracle drug. If you fit the profile...you > should be looking for your perfect match donor. I also fear that the > Marrow registries will suffer due to these miracle drugs. Thats a > conversation for another time. > > > > I stand by this. Even though a severe majority of this group do > not. I will continue to be active on this site provided the "other" > perspective!!! > > > > MikeMike > _________________________ > > Hi Mike, > > I am glad that you are posting on this list to tell YOUR story about > your successful BMT......I am glad that you are alive, not suffering > from bad GVHD and have not relapsed. > > When you look at the 'whole picture'.....all these options are > possible and that is what anyone considering a BMT needs to > understand. It is TOO EASY for a BMT center to say that this is "the > cure" when we know it has not been a cure for many. We have several > post-BMTers on the list who relapsed and are now on Gleevec. > > We also have close friends who did the BMT option for various reasons > and did not survive. > > Even your doctor gave you odds.....you said something above 50%....he > did not say 100%! Of course you are happy about your BMT because it > went well and you are now healthy......would you be singing the same > tune if you were dead, had bad GVHD or had relapsed.....obviously not. > > My point is....people are happy for you with your good outcome, but it > is not the full picture of BMT possiblilites.......and when people > present the other side of the 'coin', you need to understand why. > > And again, we want you on the list.....we need someone to represent a > good BMT outcome. > > Nancy c. > > > > > > > New! 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