MDS is a bone marrow failure disorder

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.

irractic numbers

HomeForumsPatient Message Boardirractic numbers

This topic contains 6 replies, has 5 voices, and was last updated by  L. Ann Sinopoli 3 weeks, 5 days ago.

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #32149

    Lisa Sinopoli
    Participant

    My mom was diagnosed in the summer of 2015 with Aplastic anemia started treatment NJ with Procrit injections. Those procrit injections lasted her until the fall of 2016 when transfusions started for low hemaglobin,during that course of treatment she moved in with here in PA. In December 2016 we decided to start Vidaza treatments. January’s treatment was at 100% for 5 days then off for 3 weeks. February’s treatment at 100% she could only handle it for 2 days then everything started going haywire. 2-3 blood trans fusions a week with platelets that lasted for about 3 weeks until she balanced out. Then March & April’s treatment were lowered to 70% no all of a sudden hemaglobin will not bounce back. She just started May treatment after having 2 transfusions in the last 2 weeks.
    Has anyone else had this happen?? Has anyone tried Vidaza then switched to Decitabine because it looks like Vidaza isn’t going to work.
    Thanks

    #32150

    Sherry Pratt
    Participant

    Lisa, what is your mothers age and overall health?

    #32151

    Lisa Sinopoli
    Participant

    Her age is 75 and her health is great. She had some high blood pressure and high cholesterol that’s it. We stopped the hypertension med in 2015 when she started getting dizzy and the blood pressure would run very low.She takes 10mg of Simvastatin daily. No surgeries and she had been very active up til about 7 months ago. No family history that we are aware of for cancer or blood disorders.

    #32182

    Lisa Sinopoli
    Participant

    Is there any other treatment for this? Can a trail study be done if the patient has already had chemo?

    #32221

    mdsfound
    Moderator

    Dear Lisa, You can search the NIH registry of Aplastic Anemia clinical trials underway in the USA and beyond at http://www.clinicaltrials.gov. A doctor who also specializes in AA can also help determine which course of action would be best on behalf of your mother.

    #33545

    gloriaf
    Participant

    Hi,

    Has your Mom had a bone marrow biopsy? I’m the same age as your Mom.

    #33667

    L. Ann Sinopoli
    Participant

    HI,my mother has had several bone marrow biopsy for determining diagnosis and the way the treatment may be going.

    Good luck

Viewing 7 posts - 1 through 7 (of 7 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