[Al's Wife]

Stayinghopeful,

MDS is a rollercoaster ride and you have to just hold on and hang in there. When my husband was first diagnosed I felt exactly like you're feeling (and to be honest, even now I still have those days) BUT having said that, you are doing the right thing by trying to learn as much as you can about this disease.
Neil and Cathy gave you the best advice when they said to write down your questions before each visit. That's what I do, and I go down the list one by one until they are all answered. Our doctor stopped in front of me yesterday and said, Okay, what questions have you got today. Then he stood there until they were all answered.
You also have to be your Dad's advocate. Even though you are at Center of Excellence for MDS, there is nothing wrong with getting a second opinion or even a third opinion.
My husband did not respond to Vidaza and he is now in his second clinical trial (first one didn't work) and we're hoping this one will at least slow down the progression. We almost ended up in Houston for this clinical trial when it was being offered at our hospital locally and if I hadn't done my own research we would be in a hotel in Houston instead of sitting in our own home today.
So don't be afraid to ask questions (even the hard ones), and stay strong and hopeful. There are so many new drugs being tried and looking very positive.
Good luck and I sure hope your Dad responds to Vidaza.
Linda