Thread: Danielle S.
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Old Fri Dec 3, 2010, 09:00 AM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Danielle!

I'm sorry for your trouble, but glad to hear your husband has a great attitude about his disease. That's really important, because a strong positive outlook helps create the energy necessary to understand all this highly technical information -- and to fight the disease itself. Neil has already pointed you to some great resources and offered some super suggestions. I imagine your doc has already given you a bunch of pamphlets and booklets to read as well.

One of the resources that I have found particularly helpful are the webcasts and webinars sponsored by AA&MDS International and some of the other foundations and support groups. These are presentations by some of the top MDS doctors. I highly recommend watching every one of them that deals with Stem Cell Transplant, because every doc has a slightly different perspective.

You will find the AA&MDS online learning center here. You asked about the success rate for transplants. Neil has rightly noted that every patient is different in that regard, but there's some good data in the presentation you'll find at AA&MDS by by Dr. Matt Kalaycio. You'll want to watch that particular lecture when you are feeling strong and want information, not when you need a pep talk. We all go through periods with this disease when we are felling strong and can take whatever the world throws at us, and other periods when it feels like the whole world is crashing down on us.

You should watch some of the other presentations, too. They are all good and all slightly different. These transplant docs learn more and more about what works all the time.

If you don't mind me being nosy, how high is your husband's blast count? And what cytogenetic abnormalities does he have?

Is your second opinion going to be a consultation with a transplant center? Some folks only have one nearby, while others have more options (I have three to choose from near where I live in NC.) Transplant centers are all slightly different in their approach, so it can be good to check out more than one, if that's an option.

On the other hand, as Neil suggested, given your husband's risk of infection, you don't want to delay too long, particularly if his blast count is increasing or his chromosomes are picking up new abnormalities. Do you know his IPSS score? I've found the thing that makes me feel most powerful, most in control is to learn everything I can about the disease and my own condition. That way I can talk with the docs and understand what they are saying, and fully participate in the decision making about my treatment. But it is a lot of work!

Fortunately, there's a great bunch of folks on marrowforums who can help. Some have already had transplants; others are weighing the options, just like you guys. So stay in touch.

Take care,

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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