[Michael Collins]

I initially started on Inqovi and Venetoclax around 18 months ago. I did three rounds of those two drugs and my blood counts totally crashed. Took two months for my numbers to start to improve. Then our son brought covid home. Took another five weeks off with no treatment. So I went three months until I started round four of Inqovi only. Did rounds four through eleven of Inqovi only. Needed a platelet transfusion each time. Switched to Dacogen three months ago to see if I needed less or none platelet transfusions. Didn’t need a transfusion if they did three days of treatment but needed one with four days of treatment. Doctor said we will do six rounds of Dacogen and then see if I am in remission or not and take a break to see how my numbers improve. I did Inqovi in pill form. Minimal side effects – primarily a little nausea and fatigue.

[Michael Collins]

I started Inqovi in August of 2022. My first three months were both Inqovi and Venetoclax which clobbered my blood counts. Took three months for my platelets to recover. Cycle four to cycle seven has been Inqovi only which I just completed. I also wonder what happens after Inqovi stops working. I will ask my doctor next Friday. MD Anderson is prescribing my treatment as I live in Indianapolis and my hospital is affiliated with them. Haven’t seen very many posts about Inqovi since it is a new drug. Also follow Facebook sites CMML Friends and Fight Myelodysplastic Syndrome. Did see a post recently about some one who had been on Inqovi for over four years and it was starting to wane so must of been part of the original clinical trial.

[Michael Collins]

Per my earlier reply what are some of the side affects your husband is experiencing? I just completed my fifth round of Inqovi. Only two pills. Doctor intends to go to three pills next round if my platelets recover quickly. My major issue is bone/muscle pain in both arms.

[Michael Collins]

I started taking Venetoclax and Inqovi seven months ago. I live in Indianapolis and my cancer hospital here is affiliated with MD Anderson which has recommended my treatment plan. After three months on the two drugs I had to stop for four months while my blood counts recovered. Also had to take a one month break because our son brought covid home for Christmas. I recovered okay from that. Just did round four of Inqovi only in pill form. Next round of Inqovi will be by IV as I was told it’s not as rough on your bone marrow and your counts should recover more quickly. It’s my platelets that are struggling. Hemoglobin is doing okay. I have the following mutations ASXL1; TET2; SFR2.

[Michael Collins]

I started seven months ago on both Inqovi and Venetoclax. After three months by blood counts really dropped. On top of that I caught covid at Christmas and had to wait another month to recover before I started my fourth dose of Inqovi. Only two pills this time. Stopped Venetoclax. Did a bone marrow biopsy after the third round and no blasts were discovered either in my blood or bone marrow. Glad to read that someone has been on Inqovi for over four years as I have been wondering where this journey is going to take me. I live in Indianapolis and I’m utilizing Community Hospital Cancer Center which is now affiliated with MD Anderson Cancer Center. MD Anderson is recommending my treatment and following which I am very grateful for.

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