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Myelodysplastic syndromes (MDS): When do you need to start treatment?
Blood Cancers & Disorders | Last Active: Aug 5 7:58am | Replies (26)Comment receiving replies
Hi Lori,
I didn’t want to post this in the other chat, but my brother who had HL twice was diagnosed this past Monday (his birthday) with MDS.😢 We don’t know what kind or level yet. Waiting for the next appointment. From everything I’ve read, this is bad. He just turned 61 and was hoping to retire next year. I have a ton of questions but really need to wait until we know which blood cells aren’t forming correctly.
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Hi @raetp. Oh golly, this isn’t news anyone expected to see, especially your brother on his birthday! I remember that just talked about him having had HL a number of years ago with an autologous (own cells) stem cell transplant for treatment and he’d been doing so well. I’m so sorry to hear about this little setback for him.
As you mentioned there are different classifications and staging for MDS so we’ll wait until your brother knows more about his diagnosis. But try not to despair, there are treatments for MDS. The ultimate and only potential cure is a stem cell transplant using donor cells. It can be very successful. In fact, @katgob very recently had a transplant for MDS. I had one 5 years ago at the age of 65, for AML, MDS’s aggressive and nasty step sister. I’m super healthy and feel as though nothing ever happened.
So please encourage your brother and family to stay positive! We have a great support group with members who have MDS and we’re all here to offer encouragement and hope. Is he still being seen at Mayo-Rochester?