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Old Sun Oct 24, 2021, 07:39 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Peter,

Your mother is a champion survivor, for over a quarter of a century!

Some of your posts from years past are in the AA-MDS-TALK Archive here at Marrowforums, back when Revlimid (lenalidomide) was called CC5013.

I haven't come across any studies of Revlimid for octogenarians with long-term MDS, but I've read a couple of reports on Revlimid in older patients with AML or myeloma. Results were sometimes poor, statistically, but it's so dependent on the patient's health, more than their age, that I couldn't draw a useful conclusion. And studies that were done years ago may not represent the state of the art. As you know, Revlimid has a good overall record with high-risk 5q- patients, but your mother may not be considered high risk. Has her hematologist talked about any other choices, such as using erythropoiesis-stimulating agents (ESAs)?

If chelation continues to keep iron overload at bay, then continuing the blood transfusions is still an alternative to starting a new treatment regimen. Ultimately, it may come down to your mother's decision about quality of life, but I would get as much information as possible from experienced doctors before making a decision like that.

If your mother does decide to try Revlimid, the doctors may start with a reduced dose to determine her level of tolerance and the degree of side effects. Some of the common side effects can be dealt with, while serious side effects like low platelet or white blood cell counts, or thrombosis, can be especially dangerous for older patients.

I hope that you and your mother can seek the advice of the most experienced hematologists that you know of. You may not have to limit yourself to Germany if you can contact hematologists in the U.S. or elsewhere who might offer a consultation.
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