What can I expect in end stage MDS?

Npmadsen asked...

Dad is 94 years old and has severe myelodysplastic syndromes (MDS). He seems as if he is really failing now. We are transfusing him with red blood cells, just as a comfort measure. His white blood cell count is falling and is now 0.7. His absolute neutrophil count is 182 and his platelets are now the lowest they have been at 24,000.

We are now just having his blood drawn at home and when they're low we'll just bring him for a transfusion, as he gets great pain when his hemoglobin falls to 7.0.

What can I expect as a caregiver at this time? I am amazed he has not developed a severe infection or hemorrhaging, only some gingival bleeding this past Sunday. How long can this go on for and what symptoms will he likely experience?

Expert Answer

Dan Tobin, M.D. is the author of books and articles focused on the practical and positive aspects of family caregiving.


It sounds like your Dad is in the end stages of MDS as you note . As a caregiver this is a very stressful time. It is best to ask his doctors how long this can go on for in his case and at the right time what sorts of treatment do they suggest for comfort. Have you talked about palliative care for him when it is possible that is the best additional care for him.

Best regards

Dan Tobin