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.

Husband Vidaza or not?

Home forums Patient Message Board Husband Vidaza or not?

Viewing 8 posts - 16 through 23 (of 23 total)
  • Author
    Posts
  • #8702
    Terri
    Member

    I don’t see in any harm asking before making an appointment how many patients they treat for MDS as a start. We were lucky my daughter referred us to this group of drs and we just ended up with the one we have and I Thank God for that every day. He is so good

    #8703
    Fran
    Member

    Well, we are still trying to get a referral to the Mayo Clinic but so far, no results. My daughter lives in Sacramento, California and she said we might be able to get into Davis Medical. But Jim has to get out of the HMO and go with Medicare plus AARP maybe. This way he can see other dr. that are not on our plan. These HMO’s really Suck!! and I am really frustrated with all of this…..Help someone please

    #8704
    Suzanne
    Member

    I think one of the best ways to find experience with MDS and AML is to call the patient liason in the MDS Foundation 800-747-2820. You might also try patient services at 800-955-4572 for The Leukemia and Lymphoma Society. Go to http://www.clinicaltrials.gov and look under MDS and AML for any doctors working with drug trials in your area. This sould be a start. I am surprised that a oncologist or hemotoligist in your HMO can’t give you a recommendation. This disease is rare but not that rare!

    #8705
    Suzanne
    Member

    I think I would look into changing to medicare and a suppliment immediately at his age if the HMO is limiting treatment.I am still confused about whether you are talking about the medicare HMO plan or an independent one. There are also some appeals prcessed on some of these plans.Just make sure he is ok for coverage for a pre-existing contitionsince since I gather he did not take it when he was first eligable. Do you have a state of county office for help and advice for Seniors? I know Md does. If resources are limited you might qualify for medicaid.Check out what you qualify for that might help. It takes asking lot’s of questions and being persistant. The patient liason at the Mayo clinic near you might be able to help come up with a plan so you can go there.

    #8706
    Fran
    Member

    we went to our primary care dr. and he said to get out of the HMO and try Medicare plus AARP. He can then maybe be able to get into the Mayo clinic which is about 1 hour drive from are home. We live in a retirement community. We are also trying to get a 2nd opinion through are HMO. Sofar, Jim has not been on anything and other then him being tired..that is all that seems to be wrong with him. We did get a copy of al his blood test and boneMarrow biopsy. He also has coronary artery disease, hypertension, diabetes. He already has spent 8 months with this disease without any definite progression.

    So that is the sad story regarding my husband Jim. I appreciate all the help we can get now.

    Thanks again to everyone who has answered me.

    Fran

    #8707
    Sandy M
    Member

    fran, I don’t live to far from your daughter who lives in Sacramento, anyway, when my fiance sought out a second opinion we went to the best, Stanford Univ. and Dr. Greenberg, it is in Palo Alto ca. and is very well known for their M.D.S and hemotology experience, they are a center of excellence..so if you can make it Ca. it’s worth looking into, Dr. Peter Greenberg is the guru of M.D.S ….in Ca.

    #8708
    Suzanne
    Member

    Fran, At least with no dramatic progression in the 8 months you have known about this you might have some time to try to find a way to get a better opinion about what to do. And with such slow progression and so many other health factors supportive care and waiting and watching might be the best treatment for now.

    #8709
    Fran
    Member

    Hi All:

    Thank you for so much advise and help. We really appreciate all of your concerns. We are still hoping to get into the Mayo Clinic here in the Phoenix area where we live. Jim has had only 2 blood test and so far he is only tired..no other signs of MDS. We will wait and see.

Viewing 8 posts - 16 through 23 (of 23 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.

Login

Login

Search Forums

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