MDS (myelodysplastic syndrome): When to start treatment?

Posted by tinytwiggy @tinytwiggy, Dec 1, 2024

My husband has lower risk MDS (SF3B1 mutation) MPN RS T . He has had chronic anemia that has been monitored for over a couple years. He also has a strong history of heart disease; had 3 stents placed in his heart on 3/12/24. He will have a femoral endarterectomy /angioplasty on Dec. 13th to help clean out his blocked arteries. (This was postponed from 12/3).
Dave has great hematologists who have recommended he start shots mid-December, to help boost his RBC/Hgb. They feel this will also help with his other medical conditions. Drugs mentioned were Aranesp, or Darbepoetin. There are other options like epoetin, Epogen, Procrit, but these were not mentioned in his plan of treatment. Just trying to sort everything out.
Can anyone share personal experiences on these meds and if they helped you, had any side effects, etc. He is a little fearful of starting. He is worried about side effects reported on some of the meds (especially heart attack and stroke). He also wonders once he starts, will it lead to needing more and more? Will it advance his condition quicker? Should he stay on the wait and watch plan longer?? He has been tired for a couple years now, so he has learned to deal with that the best he can. He wonders though, is this better than other side effects, or complications that could arise?
We know he has to do something at some point. Hgb. was 9 on 10/24 and up to 10.1 at his highest over the last year, or more. The anxiety of the unknown is a big part of the fear he is facing. He was just diagnosed on 4/15 so lots to learn yet. Any shared experiences and thoughts are welcome. Thank you so much!

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I'm 79 male and burdened with 5 mutuated chromosome that manife s ted into MDS/AML having had blasts up to 26% and now is in REMISSION. Chemo is combination of vidaza and orally ventocolex since December 2023, currently in 11th cycle. Hgb is around 12.0 best since 2018....WBC and ANC normal range. Platelets vary have been as low as 5.
Everyone is different. My condition came out if no where after several years (since 2006) of what was described as "chronic fatigue syndrome " . The bet is my exposure to agent orange during my RVN tour in 69/70.
Wish I had answers for you. Best on your journey. Don't give up.

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Thank you for your response and your service to our country! Happy things are looking up for you! Keep that going! We'll keep on keeping on too! That's the main thing. Positive attitudes can do so much! God bless!

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I have a diagnosis of MDS/MPN- RARS-T. My platelets have been too high. When I began hydroxyurea to lower the platelets, it resulted in lowering my hemoglobin as well. I now take an injection of luspatercept ( fairly recently approved) every 3 weeks to raise my HGb, so that no transfusion is required. It works great. You might ask about it.

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