In-patient chemo after Decitibine failure

[Mairi Cooper]

My father is 85 and was diagnosed with MDS 7.5 years ago. He successfully kept the disease at bay with azacitidine (Vidaza) for 7 years. After months of a steady decline in his hemoglobin (from 10.4 to 6.8), his doctor moved him to decitibine (dacogen). This has been unsuccessful. We are now considering options, none of which are great. Medicare denied Venetoclax because his blast cells are still at 10%. Option #1 is to do in-patient chemo. We have not been given the name of the drug yet. Option #2 is a 10-day course of decitibine every 6 weeks (not recommended by our doctor). I looking for any and all information about chemo that this braintrust might be able to provide. Thank you in advance.

[Pat Lawson]

I would also like to know the answer to this question as my husband was in a trial of vidaza and venetoclax for high risk mds and he quit responding to treatment after 14 months. He has been changed to Decitibine treatments and needs blood and platelet transfusion treatments weekly.

[Mairi Cooper]

Pat…it sounds as if we are on the exact same track. I will update you as we find out more.

[Amy S.]

Thanks for sharing. I also have MDS. Please post when you find out more.

[Amy S.]

Sorry I click submit too soon. Even though medicare decline Venetoclax, the pharma company offered some discounted or free program depending on a case by case basis. You can goggle “Venetoclax Access Solutions” and look up the search results. I had tried to post the actual link but the system would not let me. Sorry.

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