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.


Home Demo forums Patient Message Board MDS / MPN RS-T

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
  • #46585
    Jimmy Greenhut

    Hi I was wondering if anyone has this type? Was diagnosed last yr,watch & wait. Last week I had my results, every 4mos. My Dr is suggesting Luspatercept instead of EPO shots & transfusion.

    My #’s
    WBC 6.3
    RBC 2.42
    MCV 115
    MCH 38
    Platelets 394
    Ferritin 660

    Also on occasion when lying down swishing in ears & last couple months both legs ache after short walks.

    Thanks in advance, Jimmy

    Ann Jones

    Where do you live? Didn’t know Luspatercept was available ? Congratulations. I’ve understood it’s a lifesaver.

    Jimmy Greenhut

    Ann,still doing Procrit once a week now 40k units. I’m sorry Luspatercept isn’t yet :(. The FDA has fast tracked it. My Hemo says maybe early 2020. I’m in Fl. My hemoglobin is 9 for the last month. Was bi-weekly now every week. It was to late for me to enroll for the study, as I was already on Procrit. I apologize that I didn’t make that more clear.


    Hi Jimmy, You are the 1st person I have met with the same diagnosis. I was diagnosed at Huntsman Cancer in Salt Lake City in 2018 when I had a BMB showing mutations of Jak2v617f, sb3b1, and tet2. I also have MGUS. I have since moved to a city in central Oregon and am seeing a hematologist/oncologist here who does not really seem familiar with my diagnosis. I went for a 2nd opinion @ OHSU in Portland (3 1/2 hrs away) who is recommending a 2nd BMB to be done there in the spring. My only symptoms so far are shortness of breath, fatigue, and recently a loss of appetite. I have been on Hydoxyurea since my initial diagnosis that keeps my platelet count normal (it was initially 680) with no side effects to speak of. My most recent blood counts were RBC 3.44 WBC 7.0 platelets 296 MCV 104 MCH36 and low free light chain ratio of .08, lambda 20. I am still in active surveillance mode.

    Jimmy Greenhut

    Hi Marilyn, come join a private FB group. You’re not alone. Not that many have our branch of MDS. It’s a great group, like family. MDS/MPN-RS-T RARS-T 2020. Only 50 are in the group. email me if you need to chat

    Take care, Jimmy

    Jimmy Greenhut

    Hi,read below. Looking forward to hearing from you. JG

Viewing 6 posts - 1 through 6 (of 6 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