MDS 5q- since 1994 (!)

[Peter R.]

Dear Forum-Members,
my name ist Peter, living in Germany near Hamburg. I am a new member of this forum but I think one of the oldest members as well, because I was on the AA-MDS-Talk for some years starting in 1996.
My mother Christa was diagnosed with MDS5q- back in 1994 (!!!) and gets transfusions since then. She uses Desferal for a long time every second night. She was offered several different treatments during the decades but always refused them. "Never change a running system", she said.
Now she is 88, nearly blind but absolutly clear in her mind and always on the internet, especially youtube, and in contact with her grandchildren.
Things are now getting worse, the time between the transfusions decrease to below two weeks and she is offered Revlimid.
I hope to find some people in this forum to get informations about Revlimid in older Patients. How about side-effects in this group? How about the danger of getting infections, especially in times of Corona?
Thanks for input,
Peter

[Matthew42]

Hello Peter,

My mother has severe aplastic anemia, so I don't know much about MDS. They are similar in some ways, but still very different diseases. I surely hope someone can give you the information that you need.

That is amazing that she has managed to live so long with MDS. Wow! That is fantastic. And I wish her many more years of good health and happiness.

Much love to you and your mother,

Matthew

[Neil Cuadra]

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.