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Danielle,
Try to take a deep breath and relax, if you can. My husband was recently diagnosed with MDS (May 2010), and we are still trying to recover from the shock. This illness is such a roller coaster ride that you need to try and strengthen up for the ride. Some days will be great and other days - well, you know!
All I can suggest is to read as much CURRENT information as you can to try and educate yourself. This forum is a Godsend, in my opinion.
If you are like us, we had never heard of MDS until my husband was diagnosed. He still chooses to be an ostrich and buries his head, but I have to know what we're up against, so I'm constantly talking to medical people and reading.
My husband was on Vidaza for 6 cycles, but unfortunately it didn't work for him, and he will be entering a clinical trial later this month.
If I can offer any advice it would be to try and not rush into anything unless it is absolutely necessary, check out all your options, get a second or even third opinion, and then decide what you and your husband think is best for him.
Just know that we all know what y'all are going through. We're all in this together. God bless you.
Linda
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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.
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