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Old 11-08-2007, 10:06 AM   #1
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rgreen77 HB User
Unhappy Refractory ALL survivors
My 21-year-old daughter has refractory ALL. She has relapsed three times this year. The chances of transplant working are 10-20%. I wanted to know if there are any survivors out there that I could talk to.

 
Old 12-20-2007, 06:52 AM   #2
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seanfitz38 HB User
Re: Refractory ALL survivors
Hi, I just joined this group so I am sorry that you are not receiving this letter sooner. I was diagnosed with chronic myelogenous leukemia on February 12, 1991 while in the Navy when I was 21. This was before Gleevac and my only hope of survival was a bone marrow transplant. It was still less than 5% for five years, but without one it would be fatal within 3 months. The good thing that your daughter has on her side is her age. The younger people I watched go through this process did much better than even the 30-40 year olds. The other good thing is that this is 16 years later and medical procedures and bone marrow transplants have improved drastically. Please let me know how you all are doing and if you have any questions please ask.

Sean

 
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Old 02-11-2008, 06:47 AM   #3
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HOPEFULL101 HB User
Re: Refractory ALL survivors
Do you know if your daughter is cd 22 positive. If so there is a trial going on that looks interesting.

 
Old 02-12-2008, 07:53 AM   #4
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BrianaKathleen HB User
Re: Refractory ALL survivors
My cousin recently relapsed with ALL for the second time. She is currently being treated at St. Jude's hospital where she will receive another bone marrow transplant. Do you have a caringbridge site? That is a great website and support system.

 
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