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DD,
The first thing to do is take a DEEP breath! This is always overwhelming. I am constantly amazed at how many healthy and fit people are hit with this insidious disease.
My husband was diagnosed in Dec. 2012. It was a few days before Christmas. We had to hit the ground running and have been running ever since. But, we have found out that you do have to take it easy from time to time or you will go absolutely crazy!
Everyone's case is different as has been stated here. My husband was also diagnosed with unfavorable cytogenetics. He started Vidaza and was on it for approximately 6 months. During that time, he felt good and we were able to do some traveling with constant blood tests thrown in. But it did buy us some time to get a donor in place, do some fun things and just live and enjoy life.
When things went downhill, they went fast. In August the Vidaza had clearly stopped working and he was told that now is the time for transplant. There were no other options so it was a no-brainer decision, really.
He had his transplant on Oct. 8 with cells from his brother--a 10/10 match. He is recovering well. There are still, of course, some issues. But all in all he is really doing well. We are at Day +26.
As people have stated, do your research and check these forums constantly.
I have said again and again that I would have been lost without the people on here. There is so much caring and concern it will blow you away! And the information is coming from the people who are living this right now.
Best of luck to you and your husband.
Deb
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