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MDS Myelodysplastic syndromes

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Old Wed Nov 2, 2016, 05:54 AM
Nervy Nervy is offline
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How to help father with MDS or CMML

Hi, first I posted an introduction with much of this background in the "Tell Your Story" forum, so please forgive some repeat info.

My Dad is in his early 70s and while he has not been given an official diagnosis, right now they think it's either MDS or CMML. I live with him and do not know what to do to help him. He is bad with doctors and computer illiterate, so he has no idea about what he faces, other than the fact that cancer is a scary word. Right now as they do further tests on his bone marrow sample, he just knows the names of those two conditions, one of which he probably has.

Me and my Mom try our best to support him and research this, but it's hard. I feel like I'm full of things I can't talk about with anybody, especially my father.

I like to research things, but reading online has been bad for my stress when it comes to this. I can find websites with some absolutely frightening survival statistics for MDS and CMML, but I also can find forums like this with some inspiring individual stories.

My Dad is not healthy, but he's strong. In his early 70s, he often has gotten mistaken for a man 10 to 20 years younger. He's overweight, has diabetes and had a heart attack two years ago, all huge negatives in the health department. On the other hand, he is the strongest person I know and grew up a tough farm boy. A few months ago he was doing his annual garden, just like normal, a big work intensive project that saw him work on it every single day, no problem. He also earlier this year walked for hours a day, again, with little to no problem. In the last couple of months he's been very tired and found it harder to exert himself, but seeing as how he has anemia, I figure that goes hand in hand, although that is just my guess.

I mention this because I have no idea how hopeful I should be about my Dad's chances to fight this or survive intense treatment. A lot of the success stories I see online are from people 10-25 years younger.

I don't know what I should ask him to ask his doctor, I don't know how I should talk to my parents about this. I don't know how much time I have with him. I don't know how much I should worry or not worry. I am a worrier, but also someone who likes to be informed and prepared. Basically, I am looking for any kind of advice or suggestions. Thanks in advance.
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