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MDS Myelodysplastic syndromes

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Old Tue Mar 22, 2011, 09:06 PM
TheBirthofLove TheBirthofLove is offline
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Nervous about tomorrow

So, tomorrow we are having another consult with my mom's oncologist. I think it is primarily to discuss our course of ACTION. We have an appointment the first week of April at Moffitt to find out about clinical studies for which my mom may be eligible. When I spoke to the oncologist yesterday on the phone, he told me he felt my mom could be a candidate for some kind of transplant. That made me feel somewhat hopeful. Yesterday, my mom was pressing me for more information. She knows that I've been googling and she was asking me if I had found out what her prognosis is. I told her I had read some stuff, but it was all conflicting and there are a lot of factors that go into it. That's true, but I was really just trying to dodge the question. She's like, "Well, what five years?" How can I tell her that what I've read actually says anywhere from 4 months to maybe 2 years? Ugh. Anyway, I mentioned to the oncologist that my mom has been asking and I haven't wanted to share what I've found because I am hoping she will stay positive and strong. He said he would be willing to discuss it with her if she asks the question. Of course, today on the phone she tells me that the one question she really has for the doc is about life expectancy. I guess the good thing is that she said she plans on not taking it too hard or letting it get her down because now the idea of a transplant is in her head. She said and laughed while saying it, "Maybe I will be one of the lucky 20% who gets cured with a transplant and I will live forever. I doubt it, but maybe." *Sigh.* Anyway, I am just posting (venting) because tomorrow I will be going with her to this appointment and some very hard questions with hard answers will be given. I do hope we get a ray of light...as far as I hope that her doctor will be able to kind of give us some more guidance.
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Old Tue Mar 22, 2011, 09:28 PM
Neil Cuadra Neil Cuadra is offline
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The best doctors answer our questions honestly, including telling us when they don't really know the answer. Life expectancy is one of those cases. They know what the statistics say for a group of patients, but those numbers may not apply to one individual patient. Some people beat the odds and some people don't. Perhaps it's better that we don't know which group we're in; that's what gives us each the hope and determination to succeed.

Make sure your mom knows that nobody knows for certain how long she'll live. If you believed the statistics in 1996, my wife had a 2-year life expectancy at the time, but she's going to be at the Survivors Celebration in Phoenix this weekend. We've lost too many people to these diseases but we repeatedly hear from people who are still here despite dire predictions that they wouldn't make it this far.

I can understand why you are nervous, but from what you've said I think your mom is ready to hear the facts and is prepared to cope with them.
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