Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

MDS in "young" people

This topic has 4 replies, 1 voice, and was last updated 15 years, 9 months ago by txplumber.

Viewing 5 posts - 1 through 5 (of 5 total)

Author

Posts
July 17, 2008 at 2:13 am #21067

newlywedmds
Member

I wanted to get an idea of how many people on this forum may be “young” people with MDS. My husband, “stever” is 34 and diagnosed last month, and I’m thinking that could be called young for MDS. Are there any other people under 40 out there? Any with no prior related illness (de novo MDS)?
We have a difficult time knowing what to expect and how much his age will affect his prognosis. He just had his first platelet tx on friday when his counts hit 8.
Since we are new we just want to make some connections. Hi everyone!

July 17, 2008 at 12:20 pm #21068

ButchL
Participant

My step daughter had AA which is similar at 20, My wife was 42.

July 21, 2008 at 3:31 am #21069

adb001
Participant

I was diagnosed in April at the age of 26 with no prior related illness. I don’t know much about my situation and treatment options yet as the doctors are waiting until the baby is born to do anything other than transfusions when my platelets go below 20. My oncologist seems to think that my best bet considering my age would be to do some type of chemotherapy, possibly looking into a bone marrow transplant, but he’s going to have me go back to the university hematologist 3-4 weeks after the baby is born to look into things further.

July 21, 2008 at 3:48 am #21070

bianca1216jt
Member

from what i was told from 2 well known hospitals and many sites i have read is that if you are under the age of 40 in good health no prior problems and recieve a stem cell transplant you have a chnce of a cure between 60-70% but there are long term effects after transplant if your husband wants kids he should freeze his sperm before transplant.

July 29, 2008 at 12:17 am #21071

txplumber
Member

I am 40 and was diagnosed 2 months ago with MDS. I have had a multiple blood transfusions totaling 26 pints. I just started on Revlimid last week. I set up a website at http://www.IHAVEMDS.com. All that can be done is a bone marrow transplant. Aranesp did not help
Author

Posts