--- In [EMAIL PROTECTED], "Meghann Bell" <[EMAIL PROTECTED]> wrote: >
Dear Meghann, Welcome to the group and I am sorry for the reason you had to join. Your head must still be spinning since your diagnosis, especially weighing the BMT vs. Gleevec decision. It is so hard! It is a very personal decision. But you have come to the right place to find lots of true empathy. And lots of opinions. I was dx'd at 29 right after having my first baby, in 12/01. My hemotologist at the time said that BMT was the only way to go, but said that if my sister did not match, even a BMT was a bad idea. Basically he said, "take interferon, get your sister tested, and get your affairs in order. Oh yeah, and enjoy your baby, if you are lucky you will have about 5-7 years to spend with her". He was nicer about it than that, but that was the message! I got 2nd and 3rd opinions from more experienced doctors, and both said to start the Gleevec, see if it works, and re-evaluate the BMT route after that. My only sister was not a match, but I do have common HLA types and they project that I have at least 50 potential donors out there. But the Gleevec worked right away, and my side effects, albeit *very* annoying, are manageable. I work full time from a home office and spend a ton of time with my now 3 year old daughter. My quality of life is great. I often think about the "what-ifs" because it sure would be nice to be "cured". It is bothersome to have to worry about the potential toxicity of Gleevec and the potential of it failing. But people on this list have made a good point - what does "cured" mean? Ten years? Well, call me selfish, but I want more than that! Plus, personally, I doubt I'd stop worrying even after a successful BMT. I will have been cured from Hodgkins disease for 10 years this Christmas, but I still feel haunted by phantom lumps in my neck at least once a week. Being cured from cancer once does not necessarily put it all behind you - there is still lots of follow up, lots of risk for secondary and tertiary cancers and lots of worry about relapse. I have gotten a lot better about not letting the worry get to me, but I need to get even better at it. Someone on this list once said: "Worrying about something that might never happen is like paying interest on money that you might never borrow". I have that quote posted in my office. Fertility has been a big factor for me too, because I still hope to one day have a sibling for my daughter. And that is out of the question post-BMT. So that is another reason I choose to hang in there on Gleevec, hoping that one day one of these other new drugs will be the actual cure. Cure meaning I can safely get off of medication! But, if the Gleevec stops working or if I were to develop some other mutations, I would not hesitate to go into the MUD BMT, prepared and ready for the fight of my life. And I do feel confident that I would be one of the successful ones if I had to go that route. For me, the BMT is a very viable back up plan that I am keeping in my back pocket. I hope this helps offer some insight on the tough decision you are facing. ~Erin in MI 32 years old Hodgkins dx 1994, radiation CML dx 12/01, Gleevec 400 mg 1/02 CCR 5/02, PCRU 9/02 and holding ------------------------ Yahoo! Groups Sponsor --------------------~--> $9.95 domain names from Yahoo!. Register anything. http://us.click.yahoo.com/J8kdrA/y20IAA/yQLSAA/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/
