Hi Mike, I'm very glad you've posted your positive experience with your BMT. Husband Mark is Day 90 post transplant here in Seattle. He is pretty much sailing through this procedure, but not without some problems that have cropped up...this is a major undertaking with this immune system replacement, as you well know. I have recently password protected his Caringbridge website for personal reasons, but it is available to CML listmembers. You can read about his transplant progress at:
http://www.caringbridge.org/ak/marks username: markandkat (sounds like Mark and Kat) password: checkonmark (sounds like Check on Mark) Mark is 49 years old. He was told that the age in the past for transplants was up to age 50, but these days, transplantation has improved tremendously. If someone is considering a transplant, research the major transplant centers. Call the centers and compare information. Sometimes I am amazed at the percentages that get thrown around. Statistics are random numbers. A 15% survival rate may be at one center, while it is 95% at another. We have recently learned that many, many people died from complications of a BMT 15+ years ago, AND many times it was due to the CMV virus that had reactivated. If your blood makeup shows that you have the CMV virus (CMV+) and it is dormant, this is a factor that is watched persistently for reactivation, or at least is here at The Hutch in Seattle (Seattle Cancer Care Alliance). About 50% of people in the world have the CMV Virus and 50% do not. It stems generally from a cold as a young child and the virus never went away so it harbors itself in a dormant state until one becomes immunosuppressed and it then can at that time reactivate. People would die from the reactivation of this virus after transplant since doctors didn't know what it was or how to detect it. Once they detected the virus, they then didn't have any way to fight it. NOW, they have the tools/medications to fight it off once it reactivates. This takes constant monitoring of the CBCs for the CMV activation. If the virus reactivated in those who carried it and it was not caught early, it turned into CMV pneumonia and they died from it. For the past 10 years it has been totally treatable and maintained back into dormancy with drugs like Ganciclovir and Valganciclovir. Usually 1 year post transplant a patient will not have any problems with this virus reactivating since the new immune system has taken over, but it is still taken very seriously. It is a fact that Bone Marrow/Stem Cell Transplants are very risky, but it does not necessitate giving inaccurate information, or making people feel bad for considering going through one. Studies are continually in effect to discover better and better treatments for complications and survival. But overall, survival still also depends upon the patient adhering to the strict regimen set forth once this treatment option is set forth. Today, survival rates from BMT's are very high for CML. Even at age 49, husband Mark is going through this well, but it doesn't mean our job is over at the 100 day mark. It will take constant monitoring for several years. In our eyes, this is much better than watching those Phillies go up and down. It boils down to researching all the information required to make a sound, comfortable decision to proceed. Many people have died from CML by NOT going through a transplant. I have heard stories of someone deciding to go to transplant, and then they receive "hate mail" from people they thought were their friends and supporters in fighting this disease. Please remember that everyone needs support, whatever their decision may be...clinical trials, ongoing therapy, or transplant. I thought that is what these support groups were supposed to be for-providing information and support. I guess I didn't read the part that says these sites for only for those not considering BMT or SCT. It's important to take responsibility for your health. Find out what complications caused deaths after a transplant. It is not the same for everyone. Thanks for listening. Katrina ------------------------ Yahoo! Groups Sponsor --------------------~--> Help save the life of a child. Support St. Jude Children's Research Hospital's 'Thanks & Giving.' http://us.click.yahoo.com/0iazvD/5WnJAA/xGEGAA/8zSolB/TM --------------------------------------------------------------------~-> New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: [email protected] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/CML/ <*> To unsubscribe from this group, send an email to: [EMAIL PROTECTED] <*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/
