← Return to Myelodysplastic syndromes (MDS): When do you need to start treatment?

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@loribmt

Hi @janetlen, I just read your first post regarding your diagnosis with MDS this summer and was going to answer with info about the condition/treatments if it progressed. You beat me to it…a SCT is generally the direction taken for longevity if possible. Myelodysplastic syndromes (MDS) are a group of disorders caused by blood cells that are poorly formed or don't work properly because something is amiss in the bone marrow. Having a stem cell transplant (bone marrow transplant) which essentially replaces your original bone marrow, gives you a new chance to start over.

To answer your question, I was 65 at the time I was diagnosed with AML, February 2019. Three mutations made it clear that a bone marrow transplant was my only option for a future because of the strong probability for relapse.

So in June of 2019, at 65, I had an allogenic transplant using cells from an unrelated donor. Being 4.5 years on the other side of transplant, knowing what I know now, I’d do it all over again without question.

Age can be a factor. However, I mentor several people locally at my cancer center who have gone on to have transplants. Three of my newbies were over 70 when they went through the program. One gentleman was 75 and in robust health before he required the transplant.
They’re all doing really well. The people who had AML first, going through many rounds of chemo like me, have taken a little bit longer to recover and get their full strength back. One woman who had MDS but with blasts (immature blood cells) showing up in subsequent blood work had her transplant in March this year. She has recovered remarkably quickly because she hadn’t been very ill previously. So that may be a determination for your team to consider. Going into this now, while you’re healthy is a good option.

Obviously there are risks associated with the transplant. Depending on what your MDS risk level is, it becomes a risk vs reward discussion with your team. Having a SCT will require a dedicated caregiver for several months.

Have 3 biopsies with the 3rd one clean is a good sign. How often do you have blood work repeated?

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Replies to "Hi @janetlen, I just read your first post regarding your diagnosis with MDS this summer and..."

I just went from blood work monthly to every three months. I think either God is healing me or bone marrow is not the same at every location in the hip. One oncologist is uncertain about my theory, but the other agrees with me. Maybe you can ask a pathologist where you work? Right now my blood work is stable. White blood cells are coming back to normal. Red blood cells are not terribly worse. Hemoglobin is hovering about 10-11. Oncologists are talking about the mentholating agents. I want to avoid becoming transfusion dependant. I may ask for another biopsy sometime next year. The differences between the 3 I had are a little concerning. My Ipss-R and -M are both low, even with the biopsies showing rxcess blasts because my CBCs are not horrible. I had an aunt who had Myelofybrosis and then developed AML.