Young, newly diagnosed MDS low risk

[malone102]

My husband age 41 recently diag w/MDS low risk. Told just to watch, wait, and get a consult for Stem Cell Transplant just in case it progresses. All started with a low white blood cell count 2.6. He has to have blood tests every two months to watch it.

Any suggestions or info will be helpful.

[ramey2148]

I am 32 and found out in Feb. that I have MDS. My 1st piece of advice would be to EDUCATE yourself. I thought that my case would not progress and now I am waiting for a Bone Marrow Transplant doner. My 2nd piece of advice is to ask any question you have on this forum because there area very educated people (most older than me and your husband) who read and answer them.
Good Luck with everything,
Bob

[Zoe]

The best piece of advice I can give is relax. Get the facts and get your questions answered as Bob suggested. Then live life. Some folks are on watch and wait for a very long time before symptoms become severe enough to do anything. Don’t make life about MDS, there are too many good things going on.

Do you know if he has any chromosome abnormalities? That may tell you something about what to expect in the future. No guarentees, but are there really any in life? But some abnormalities tend to move slower than others. I have 5q- which is a low risk MDS. I was diagnosed in 06. Other than Aranesp every 2 weeks I don’t need any treatment at this point. My whites and platlets are fine. My hgb runs around 9-10. Shoots, I even had an 11 one week! Blew my mind, and my nurse’s too. She wondered if I was drinking enough or if I was dehydrated. A friend said he thought she meant I should drink water not Jack Daniels :*) Just joking, I have not drank Jack for 20 years or so.

Keep life in balance. As Bob said, lots of folks here who can answer questions for you.

Zoe

[Kitty]

Where in Cal are you. I also have MDS and I am looking for other people in this area, I am in the Central Coast, so we can chat.Others get too spoked when talking about this condition.

[celebrations]

hi Kitty,
I am not exactly around your area. In fact far away in Germany.
Although I’d be very interested in your case because of the trisomy 8, which is also my chromosomical abnormity…
Greetings, Bergit

[Chris B.]

I have the chromosome abnormality Trisomy 8 as well. I asked my Dr about it and he said it was one of the bad ones. I read somewhere that 50% of the people with this convert to AML. I’ve been only diagnosed for a couple months but my Dr thinks I have had it for 2-3 years. I am currently being treated with Aranespmonthly with no real noticable improvement and am currently in search of a bone marrow donor as my Dr thinks that would be the best way to go. Good luck with everything!

Chris in WI

[bobweinberg]

My advice is for you to make sure you are being treated at one of the Foundation’s Centers of Excellence. Have you called Audrey or Dee at the Foundation to get a referral?

[Author]

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