Myelodysplastic Syndrome (MDS) Support

chappelljnm

I'm looking for anyone who has or knows someone who has MDS. Doctors diagnosed my dad with MDS in 2024. I haven't found much yet in terms of support for MDS patients and their families, and am very interested in connecting so we can share what we find out and support each other. Please let me know if you're interested.

po18guy

Sorry to hear this. I was diagnosed with MDS in 2015. It is a variation known as 20q deletion, a genetic marker. MDS, as with all myeloid cancers, can run the gamut from mild to wild. Mine was low-intermediate risk, bit was 23% of may marrow when diagnosed. It rtook some time to eradicate it, but no sign of it for 8 years now.

chappelljnm

https://csn.cancer.org/discussion/comment/1723119#Comment_1723119

Wow. So it sounds like genetics plays more of a role in contracting MDS. I initially thought it was more environmental, but it's at least good to know that genetics is a factor. How are you doing now?

po18guy

Well, it may or may not have been genetics, as I had received something like 18 different anti-cancer drugs to combat two variations of T-Cell Lymphoma, which I had at the same time. At that point, my marrow was pretty much destroyed. I eventually had a marrow transplant which got rid of all three. You might look for support in various leukemia organizations, as it is a myeloid cancer which can progress to acute myeloid leukemia. MDS is not nearly as well-known as the various leukemias, and it off the radar at many facilities.

po18guy

Here is a reference page from Fred Hutchinson Cancer Center. Scroll down at it has links to MDS support organzations and groups.

https://www.fredhutch.org/en/diseases/myelodysplastic-syndrome/facts-resources.html

chappelljnm

https://csn.cancer.org/discussion/comment/1723121#Comment_1723121

I ran into exactly what you're talking about: a lot of medical people here at home (Albuquerque) don't know about MDS. Wow, though - to get MDS because of your T-Cell Lymphoma treatment. Due to distance, I'm limited in what I can do, but I'd be glad to offer whatever support I can - even if it's just to talk.

Thank you for the Fred Hutchinson Center Link - I owe you.

po18guy

You are very kind. All of this is fading into the rear view mirror, but I am well aware of the worry associated with any cancer diagnosis. Regarding your dad, please consider a pilgrimage to MD Anderson in Houston for a second opinion. Second opinions save lives. MD Anderson is one of the best centers in the world, being a research center Which conducts clinical trials and possesses the leading edge in cancer therapy. Not "that" far away, but I think the consult would be worth it if possible, even for the confidence it can inspire. At a minimum, I would hope that your dad's team is consulting with them regarding treatment.

po18guy

I hope your dad is faring as well as can be expected. FYI, I received three out of four drugs of an experimental combination when my MDS was at its worst. The experimental regimen was called TREC. T for Treanda (Bendamustine), R for Rituxan, E for Etoposide and C for Carboplatin. The :R: (Rituxan) was omitted as it is effective in B-Cell Lymphomas, which I did not have. In just two infusions, the MDS was reduced to 2.6% , an almost 90% reduction. Not to say this will have that effect on anyone else, but it may be an option.

chappelljnm

https://csn.cancer.org/discussion/comment/1723328#Comment_1723328

Thank you for telling me. My dad has a hematology/oncology appointment today, so I'll pass it on to his doctor. How did the regimen go for you?

po18guy

I had only three infusions of that regimen. Yet, after just two infusions, it eliminated what was believed to be two simultaneous T-Cell Lymphomas at stage IV and reduced the MDS to a level referred to as "Minimum Residual Disease." My hematologist called the response "a miracle." I went immediately into a stem cell transplant after that, but the response. I received was considered to be exceptional.