|
Ann,
No two MDS or AML patients (my husband has unfortunately progressed to AML) are alike. I will tell you that your husband's numbers are much better than my husband's numbers were after a year. But my husband has had a bad prognosis from day one because of cytogenetics and low - as in no platelets.
I've seen some patients who were given good prognosis take a turn for the worse and others who have had poor prognosis do well for a long time. There are no exacts in this illness.
If I could give you any advice, it is to seek second and third opinions if you are not happy with your doctor; learn as much as you can about the disease but be sure you are reading current data; and lastly and most importantly, learn to enjoy each and every day.
My husband was diagnosed three years ago with MDS and because of his numbers from the bone marrow biopsy, he was immediately put on Vidaza with no results. He has been to Emory in Atlanta, M. D. Anderson in Houston, NIH in Bethesda, and Moffit in Tampa and has been on three different clinical trials. Last August he progressed to AML and our doctor at Emory gave him "weeks not months." Tomorrow we will begin our 10th cycle of Dacogen, which we think is what has kept him alive - or it might be the monthly blood transfusions. No one knows. A lot of people on this forum have done poorly on Dacogen but it seems to have kept my husband stable.
But as I said in the beginning, no two patients are alike.
There are so many new drugs in trial and I feel that a cure is not too far in the distant future.
Meanwhile, we have had many wonderful moments in the last ten months even though we have had to learn a new "norm." The bone-weary tiredness is one of the few symptoms my husband complains of. And while his quality of life is not what he would like, we have been able to enjoy trips together, he has been able to work on his antique cars (albeit in a limited manner), and we have had great quality time with family, despite what the doctor told us last August.
God bless you and your husband and hope this post will help you in some small way. Sorry there are no specific answers to your questions, but don't EVER give up hope.
__________________
Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
Last edited by Al's Wife : Wed May 29, 2013 at 03:22 PM.
Reason: Correct spelling and add a sentence.
|