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Hi!
Do not let them paint a bleak picture for you. Find a Dr. that will give you hope. Yes, while a bone marrow transplant may not be in the picture, there are many other treatments for patients with MDS.
We were also told that a bone marrow transplant was not an option for mom, however a mini stem cell transplant was/is. And while it carries other risks, it was definitely an option that we could pursue. I specifically had to ask my mom's local oncologist to test her siblings "right away", because I wanted the piece of mind in knowing if she had a match. He asked "what for, she isn't a candidate for a marrow transplant," but I knew that there were "other" options out there.
When we met with Dr. Stone he was very positive about the mini stem cell transplant if she ever needed one. Right away he had her meet with the transplant team so that we could be educated about our options. IT was there that they searched the registry and found the matches.
Like I said, you are going to have to be your father's advocate. There are clinical trials going on every day, new drug regimens, etc.
If the Vidaza doesn't work, something else might! I'm not an expert, but the thought of losing my mother is unbearable and I will turn over every stone to find the answers that I need.
Keep positive and more importantly keep your dad positive. It is really so important. Everyone here on this board has been touched by this disease in one way or another. I remember scouring these boards in the beginning for help, but it wasn't until you posted that I found my voice here.
If you need ANYTHING let me know!
-Melanie
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