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.

Relapsed MDS

Home forums Patient Message Board Relapsed MDS

This topic contains 3 replies, has 3 voices, and was last updated by  Afreemanswife2 9 months, 1 week ago.

Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
  • #34773

    Sherry Flury

    My 73yr old husband was diagnosed with MDS high risk RAEB1. He started decitabine in Jan ‘16 and went into complete remission per his BMB in May ‘16. His wbc, hg and platelets were all in the normal range until Jun ‘17 when ever so slowly they all began to drop. A BMB in Oct ‘17 showed the decitabine was no longer working and the MDS had returned. Our oncologist at Mayo Clinic said there wasn’t much that could be done after failure with the exception of a clinical trial. He isn’t a candidate for BMT. They have two trials he qualifies for but no openings. In the meantime all his blood counts have been holding fairly steady with hg at 11, platelets about 139 and neutrophils about 1.61. My (our) biggest fear is that he will begin to decline rapidly, possibly progressing to AML, and Mayo says there is nothing more they can do. We are considering a trip to MD Anderson to see if they have anything, even a trial, that could help him. Does anyone have any experience at MD Anderson? Does anyone have experience with relapsed MDS and if so were there any treatments that were of help to you? Thanks.


    Sherry Pratt

    Why are they saying he isn’t a candidate for stem cell transplant?

    I would get second opinion at Cancer Treatment Centers of America. You can email me .


    Sherry Flury

    He has had triple bypass surgery and currently has 13 stents in his arteries. The BMT team told us he only had about a 50% chance of surviving the transplant and then a 30% chance the MDS would return. We didn’t see those as good odds at the time. Why do you suggest Cancer Treatment Centers of America over MD Anderson Cancer Center? Just curious as I don’t know anything about Cancer Treatment Centers. We chose MD Anderson because they are a research hospital with expertise in MDS and have many more trials available than the other cancer hospitals/centers I researched. Since we are in MN, Houston is a long trip not to mention expensive. I would love to find something closer to home.



    I am 56 years young and have been diagnosed with 5q-MDS and have been going to MD Anderson in Houston since October of 2013. Was diagnosed in 2011 but, transferred from a private Oncologist to MD Anderson.

    MD Anderson, The Leukemia floor is where I go to see my doctor and fast track for my blood work. The doctors and the staff have all been great. I see people from all over the world there.

    My blood work last month was (Neutrophil Abs 0.52 K/uL, WBC 1.7 K/uL, RBC 3.17 M/uL, Hgb 10.4 gm/dL, Platelet count 62 K/uL ). I will have my next BMB next Tuesday to check for mutation. I am currently taking Revlimid 10mg per day. Mine is not high risk like husbands is.


Viewing 4 posts - 1 through 4 (of 4 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.

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