74 years old lady with MDS

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• January 16, 2024 at 12:11 pm #66852
  Anand Sah

  Participant

  My mother’s is diagnosed for Myelodysplastic syndrome (MDS) and Erythropoietin was the treatment. In the beginning, Erythropoietin seems to work for my mother but now we are back to the same condition, her Hb is dropping in 2-3 months and she needs blood transfusion. Below are the Hb levels and the treatment (medicines and Injections she was advised).

  Then from last 6 months, she is on luspatercept 50 mg injection, however its also not working, the blood transfusion needs to happen every 25-30 days now a days.

  Now doctors have confirmed that luspatercept 50 mg injection is not working as well, and so my mother had to be on blood transfusion as long as she lives

  Reaching out to this forum to see if there is any treatment available for her, my mom is in India

  January 17, 2024 at 12:18 am #66854
  Joe Catalano

  Participant

  When was she first diagnosed? How long was she on the Darpapoetin. an MDS website, they usually will show you a paradigm for treatments, and which one needs to the next.
  I’m not a doctor. I’m a patient, but I’ve seen many steps of treatment following lustpatwrceptand combinations.

  January 17, 2024 at 3:06 pm #66891
  Anand Sah

  Participant

  She was diagnosed from 2018, first 3 years she was on Wepox injection,
  then from March 2021 she was on Tab Lenalidomide 10 mg OD and Tab Folinext – 1 tab OD
  then from jan 2022, she was Injection Erythropoietin 10,000 IV to continue weekly and Tab Livogen 1 tab OD, stop Lenalidomide
  then from March 2022, she was on Erythropoietin 20,000 IV to continue weekly and Tab Livogen 1 tab OD and Tab Folinext – 1 tab OD,
  then from June 2022, she was on Erythropoietin 40,000 IV to continue weekly and Tab Livogen 1 tab OD and Tab Folinext – 1 tab OD,

  February 27, 2024 at 2:44 pm #67019
  Ashley Moncrief

  Moderator

  Hello,

  Thanks for writing in. There is a lot of activity in MDS related clinical trials right now. There are over 300 open and we are hoping for new drug approvals in the near future. Is your mom interested in clinical trials? If so, we have a team that can help match her with trials ongoing globally.

  I don’t know of anything else approved to just treat the anemia. There are medications which target the MDS as a whole. In treating the MDS, it would be the hope that it would improve the anemia with time. You can ask her doctor about hypomethylating agents to see if they feel that it could be an option.

  I hope this helps!

  Ashley

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