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Myelodysplastic Syndrome (MDS)

Blood Cancers & Disorders | Last Active: Mar 31 3:15pm | Replies (51)
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@stevepark1955

Thank you so much for responding. He is not taking anything at this moment. He is in a watch and wait period which we find very difficult to wrap our heads around. He has blood draw every three months as he has done for 8 years due to radiation killing his thyroid. We will continue to do every three months. Othe than lab results he is totally asymptomatic at this time. We do meet with a transplant team this month at mayo in Jacksonville so very have a ducks in a row should his risk level change.

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Replies to "Thank you so much for responding. He is not taking anything at this moment. He is..."
Lori, Volunteer Mentor | @loribmt | Mar 29 8:43am

A watch and wait period can be a little confusing. It feels like you’re waiting for the other shoe to drop. But it simply means that your husband is in a window of watchful waiting or active surveillance right now because of some abnormalities showing up in his blood work. His doctors are be cautious by following his condition but not rushing into any treatment that isn’t necessary.

Having blood work every three months is a good indicator that things are pretty stable right now. His doctors aren’t anticipating any acute changes or they’d have him do labs more frequently. In my personal experience with leukemia, 3 months is a long leash! 😉

If his MDS does progress to requiring a stem cell transplant, his doctors will have discovered the changes early enough so that he would go into transplant much healthier in the early stages of the disease. From my perspective as a stem cell transplant survivor of 5 years, meeting with a transplant team ahead of time is really a great idea. If you have any questions at all about the process, please don’t hesitate to ask. There are a number of members here, including myself who have had bone marrow transplants for AML or MDS and other conditions. So we’re here to help out whenever we can.
Having a SCT usually requires being near (within 30 miles) of the clinic for 100 days or so. Do you live near Jacksonville?

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