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kjjjrader (@kjjjrader)

Myelodysplastic Syndrome (MDS)

Blood Cancers & Disorders | Last Active: Jul 30, 2020 | Replies (14)

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@boi683

Has anyone had MDS diagnosis? If yes, how was it treated? Has it become AML?
My husband received this diagnosis a month ago. He will go back to MDA in Oct, .

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Replies to "Has anyone had MDS diagnosis? If yes, how was it treated? Has it become AML? My..."

Hi @boi683, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about Myelodysplastic Syndrome (MDS). I did this so you can connect with follow members like @5qdeletion @cybears @jaylevel1 @esperanzam @lithuanian @kjjjrader and @ikampel2. Click VIEW & REPLY to read through past posts.

You may also wish to see this discussion:
– Myelodysplastic Syndrome (MDS): how to increase red blood cells? https://connect.mayoclinic.org/discussion/mds/

You ask about MDS becoming AML. Only about one-third of patients will develop AML. Is your husband in a higher risk category? What symptoms led to your husband's diagnosis?

boi683, my wife was diagnosed with CLL in 2006 and received chemo 2009, remission Jan 2010. They followed her for years and she was diagnosed with MDS in 2013. At first, it wasn't too bad. She went in every three weeks for an injection and life was fairly normal. Then, in 2019, her numbers weren't responding to the injections so we were going in weekly for more injections and eventually transfusions. This seemed like an endless road with no chance for change so I took her to MD Anderson in Houston to see what other options we had. That's when things turned much worse. She was diagnosed with AML! We had driven 3 hours home before we found out and were told to come back immediately… in the dark and in pouring rain! We spent two months there going in and out of the hospital including 21 days of "Protective Environment" where I had to talk to her through a window with a microphone. Her oncologist there told us that the only "cure" was a stem cell transplant which she had on June 9th. It was an allo, son was donor. We just learned a few minutes ago that her chimerism is 100% donor so that's great news! I'm sitting in the parking lot because I can't go into the clinic. 🙂 BTW, I was able to get her transplant done closer to home so we didn't have to live in Houston for 4 months with our two dogs which turned out to be even better since Houston has had such trouble with COVID-19!

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