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Hi Sunny - I am a 47 year old mother of two diagnosed with AML 1 year ago. But unlike your husband I am in remission on a maintenance trial. It's been a really tough go but I've had a lot of support from family and friends. My community pulled together for me in ways I never thought possible. It is this support that has kept me going. Don't give up hope. When you give up hope you give up. Please know that there are prayers coming your way. 
Hi everyone !
His SCT donor was his brother. We were told it was the best match you could get ! The are saving half of the collected cells for the future. So he could have a mini-transplant later if needed.
My husband also had the DX of AML MLL translocation of 9 and 11. Does that make him AML M5 in the FAB classification ? I don't know.
Well we were very happy to have a clean BMB report this week ! that means he is in remission for now.
I read some research that the decitibine and Mylotarg therapy can put some folks into remission( even for years ). We were told this drug protocol was traditionally used on older AML patients that wouldn't tolerate a SCT and it kept the leukemia under control but it wouldn't "cure it". The oncologist believed the SCT was the "cure". However I think there are plenty of other things we can do.
My theory is.....and although I could be totally wrong, since they suppress the patients own immune system so heavily after the SCT to control GVHD how could his body even have a chance to overcome the leukemic cell growth. Now that they have reduced his immune-surpressent drugs and let his own immune system strengthen he is doing so much better. There is definitely a difference in his thinking, energy level, desire to eat and attitude.
He just finished two weeks of heavy antibiotics due to a pick line infection and we got to drop 3 medications so the pill box is starting to lighten up !
Anyway we feel relieved and are looking forward to the holidays.
and TEX I don't think he has any kind of "percolating" leukemia. It came on pretty fast ! They day he was diagnosed, he almost didn't keep his Dr's appt because the anti-biotics he got were starting to make him feel better. We were on the BMT unit within 2 hours of that afternoon appt ! That was a wild night, but all is well !
Thankyou so much for your reponses, it means alot to be able to share !
Best Wishes to All,
Sunny
Sunny
I don't think there's any established research that sibling donations relapse more often. If that was the case, I don't think siblings would still be the preferred donation.
One of the nurses at the Hutch told us that identical twins do tend to relapse more often but I think that was more observation than established science. The idea there is that the twibs also have identical immune systems thus there is a chance that neither immune system will be able to fight back the disease.
It does seem to me (anecdotally) a lot of sibling transplants do have a relapse. But so do a lot of M<UDs. There appears (to me, anecdotally) to be a risk that there can be too many similarities in some sibling donations even when they aren't twins.
Again, I can't stress this enough. This is observation, anecdotal "insight." Unless and until there are actually studies that indicate such, we need to keep this in tight perspective.
Sunny, I had a very quick onset too. I was called back for a blood donation to check and make sure the one I'd taken a couple of days before was not a mistake. That night my doc called, told me to pack a bag and get to the hospital ASAP. And they did discover I'd had MDS oon my way to AML. Just never knew it. This is really a timing game sometimes.
Blessings