Kirby - man - you must be one hell of a guy to be so positive after all you've been through!!!
I need input from "all y'all".............
My 46 year old husband was dx 8/2010 RAEB2 (blasts= 10%) Vidaza treatment monthly ever since. Was looking to be tx dependant until last transfusion on 12/23 when all blood counts suddenly went up and stayed in the normal range. Repeat bmb 1/14 showed 8% decrease in blasts with better cytogenetics. (long arm 7th chromosome). Last bmb 4/8 showed absolutely 100% normal marrow!!!.......so - here is my ponderance.....they say this will not last. Urging for a transplant. We have met with 2 transplant teams both saying the same.......MDS will return. Meanwhile - vidaza continues - but is oh so much harder now that he is in remission........So - IF (and i am positive minded and trusting the miracle of sustained remission is our future)...but IF/WHEN the MDS returns - does anyone know - will it be explosive or gradual? Anyone know others that have had such wonderful results with 7-8 rounds of Vidaza, how long the remission lasts (of course we are all different - but is there an average length of remission?) The thought of a transplant scares the bejeesus out of me
and i feel like we'd be greedy opening up to life threatening complications should we not just appreciate the wonderful 3 weeks a month we get. He has residual deficits from a serious motorcycle accident 9 years ago and has decreased lung function, further testing needed to see if he'd be a good candidate for the transplant. Of course - he wasnt supposed to survive that either........he is a walking miracle! Would like advice and to hear your thoughts? thanks! (hope you all have a happy memorial day weekend!)
