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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.

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Viewing 7 posts - 1 through 7 (of 7 total)
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  • April 24, 2019 at 3:21 pm in reply to: Vidaza protocol #46576
    gailb
    Participant

    My husband just started Vidaza but the doctors told us there was another drug they could add if this didn’t stop the increase of blasts….not sure of the name unfortunately. My husband is too old for a bone marrow transplant so that could be why the would try this particular drug…not sure. I also read that there is a drug just recently approved by the FDA. I have also looked into clinical trials. Good luck. Hope you find a match soon.

    April 21, 2019 at 3:02 pm in reply to: Vidaza protocol #46554
    gailb
    Participant

    Thanks you for that information. I will be speaking to the doctor this week about future cycles and see what is going on with schedul8ng.
    Thanks again for posting.

    February 19, 2019 at 3:02 pm in reply to: MDS and Hospice #45130
    gailb
    Participant

    Thinking of you and your family.

    February 19, 2019 at 2:46 pm in reply to: No diagnosis #45129
    gailb
    Participant

    I totally agree…..let’s at least address the pain and try and make his life a little easier, better, hopeful whatever. We finally got the MDs diagnosis and our rheumatologist is trying him on prednisone. My sons both just sent him hemp cream that is suppose to help with pain…we are in California so it is legal….anyway I appreciate your validation since the drs still want us to,believe he has developed osteoarthritis overnight!

    December 18, 2018 at 8:04 pm in reply to: MDS Specialist within Kaiser? #44746
    gailb
    Participant

    I found a doctor with Kaiser in Los Angeles, Roberto Rodriguez. This is the doctor that worked at city of hope previously. Look him up in the Kaiser doctors and locations Got an appointment for January. Not sure he is the right foot, but why not try. Will let you know.

    December 17, 2018 at 2:50 pm in reply to: MDS Specialist within Kaiser? #44732
    gailb
    Participant

    Hi Claire,
    We too are with Kaiser and I am researching a specialist or going out of the network. I found an oncologist in LA that used to be with City of Hope….am going to try and get a referral. Will keep you updated.

    December 17, 2018 at 2:42 pm in reply to: No diagnosis #44729
    gailb
    Participant

    Thank you for your reply. It is validating! The doctors all seem to ignore that symptom even though we stress how debilitating it has become…..no one has even asked if he wanted anything for pain. He doesn’t like pain meds but that being said one of the doctors should have asked him! I am so glad you all are out there listening…..thank you.

    • This reply was modified 5 years, 4 months ago by gailb.
    • This reply was modified 5 years, 4 months ago by gailb.
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Viewing 7 posts - 1 through 7 (of 7 total)

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