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 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • in reply to: Is it worth it to take meds? #52387
    Tom Nelson
    Participant

    I have MDS Del5q. I gat a blood draw every 2 weeks and an Aranesp shop every 2 weeks I maintain at about 9.2 Hgb with this protocol. No transfusions yet. Dr. said I have a bunch of years to go. I have cut back on lifestyle, but still get all home tasks completed, in time. It isn’t perfect, but very adequate.

    in reply to: Diagnosed 2 years ago #50691
    Tom Nelson
    Participant

    I’m 76 coming up to 77. Diagnosed DeL5q 3 years ago. Now on Aranesp once or twice a month keeping RBC above 9. No transfusions yet All other tests in order. Sleep well at night and 1-1/2 hour nap mid day. Have learned to keep busy when possible. Chair and couch too handy. Do every thing in 10-15 minute spurts, then rest. Have other heart and cancer issues, but under control. With the virus, I would like to take walks, but afraid if I go around the block, I’ll be 1/2 way and too tired to return. Maybe a physical/lecture would help from his IM doctor with an emphasis on exercise or Re-hab/PT. My oncologist defers all other non-MDS DEL5q issues
    to my IM.

    in reply to: Exhaustion #50227
    Tom Nelson
    Participant

    I am MDS del5q. 3 years into the program. I have learned to work in short spurts, maybe an hour. Evening , I’m just plain exhausted. Still able to get most daily routine household functions taken care. Hgb hanging about 9. Taking Aranesp every other week. It’s a new life’s routine.

    in reply to: Revlimad #49928
    Tom Nelson
    Participant

    Almost 2 years ago, started Revlimad when hg went to 9 ( MDS del5q).No reactions 1st month (21 day on ,7 off) Mid second month started a hive like rash, Major itching all over the body. Stopped the Revlimad. Did notice hg went up to 11 and stayed above 10 for about 3 months. Now on monthly Aranesp with hg holding at 9 ish

    in reply to: Side effects of Aranesp #46951
    Tom Nelson
    Participant

    Started Aranesp 8 months ago. 1 Shot 500mg a month holding HG at 10ish, No side effects., just cost. Could not tolerate Revlimid, for MDS del5q

Viewing 5 posts - 1 through 5 (of 5 total)

Login

Login

Search Forums

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