High Risk MDS & Venetoclax

[Deniece Davis]

I am a 61 year old female with high risk MDS with blasts at 14%. I have done 11 cycles of Azacitidine. My oncologists are working on getting Venetoclax free to add to the Azacitidine. My insurance denied paying for Venetoclax. Has others done the Azacitidine that hasn’t worked and then added Venetoclax? If yes, how has the combination worked for you? How long did it take to lower your blasts? My blasts need to be lowered so I can do a transplant. My son is going to be my donor because there is no full match available for me.

[Anonymous]

Dear Deniece, Thank you for your post. I know patients on aza/venetoclax therapy who are doing very well and using this treatment as a bridge to transplant. The treatment has also resulted in reducing their blast counts to a safer level for transplant. Like many MDS treatments it may take some time to work. Typically results can be seen within 4 mos. To access patient support to review your insurance coverage and access additional resources to help you afford the drug go to: https://www.venclextahcp.com/aml/resources-support/patient-support.html. I hope this helps!

[Kathleen Till]

I am in my third round of. He i for high risk MDS. Have one more to go before Bone Marrow test. Down for a Bone Narrow transplant in September October time frame – but who knows, depends on lots of different factors.

Hope you get your medication.

Kathy

[Amy S.]

I am so sorry for your diagnosis. I am on 12+ cycle of azacitidine and venetoclax. They help to stablize my blood counts. My counts are now normal and blasts down to <4% from a high of 12%. It took effects around 5th cycle but it is different for different persons. There is no bone marrow match for me so you are blessed to have a match. God bless and stay strong. Hope you can get the free or discounted venetoclax.

[Deniece Davis]

Thank you everyone for your input! Yesterday I found out I qualify for free venetoclax for 3 years. So grateful!! I still need to work delivery out with the pharmacy. My oncologist said I will need to be admitted into the hospital for a few days when first starting venetoclax. Hopefully everything can be worked out so I can start by the end of next week!

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