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.

After Dacogen, Venetoclax and BMT, what is next?

Home Demo forums Patient Message Board After Dacogen, Venetoclax and BMT, what is next?


Viewing 3 posts - 1 through 3 (of 3 total)
  • Author
  • #67555
    Rose eden Guanzon

    I have our threads here. This thread is my way of asking if there is anything else. He has high risk MDS-EB. My husband happily responded to Dacogen. This response allowed us time to find a donor and he had a transplant. The BMT worked beautifully but after 2 years, it failed too. We cannot get more from the donor. He was put on Inqouvi and this worked for 2 years or so. Gave us quality of life. He did so well that covid 19 symptoms only lasted a day though he was positive for 2 weeks. Then in oct. 2023, Inqouvi did not work anymore. He was given Dacogen + Venetoclax. Only worked for 5 months. Now, he has transfusions of hemoglobin and platelet almost every other day. We are on our 4th week in the hospital. He has cyclical fever of unknown origin too. Please, anyone out there who has bounced back after every other day transfusions? I am so worried and scared for him.


    Hello Ma’am Rose,

    I will pray for you and your husband.
    Let’s put our faith to God.


    Amy Clark

    Hi Rose, I wish I could give you a hug and a cure for your husband. I am so sorry that you are going through this. I don’t know of anything medical, but I do know that the love and support you give your husband at this time is among the most important things you can do. May God be with you and your husband and bring you both peace. My husband and I are holding you both close to our hearts in prayer.

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

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.



Search Forums

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