MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Forum Replies Created

Viewing 3 posts - 1 through 3 (of 3 total)
  • Author
    Posts
  • in reply to: Life After Decitabine/Vidaza/Inqovi? #59326
    Michael Collins
    Participant

    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.

    in reply to: Anyone in a study ? #59311
    Michael Collins
    Participant

    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.

    in reply to: Life After Decitabine/Vidaza/Inqovi? #59309
    Michael Collins
    Participant

    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.

Viewing 3 posts - 1 through 3 (of 3 total)

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert