MDS is a bone marrow failure disorder
MDS is a blood cancer
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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 5 posts - 1 through 5 (of 5 total)
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  • in reply to: How long can we be on Vidaza. #46598
    Ken Yamashita
    Participant

    Chris,

    Thank you for the kind words. I will continue to fight and maintain my quality of life by giving everything I have in me to minimize AMLs effects of interfering with my family. Stay strong my friend!

    in reply to: Swooshing in ears #46582
    Ken Yamashita
    Participant

    Hi Aureta, I’ve been undergoing Vidaza treatment since 2014. Each time my hemoglobin count drops below 7.0 I begin to experience the swooshing in ears with heartbeat. As soon as I receive my monthly blood transfusion (3 units of blood once per month) the swooshing in ears with heartbeat is gone.

    in reply to: How long can we be on Vidaza. #46581
    Ken Yamashita
    Participant

    Hello Chris, presently my stem cell team are searching for donors who are a 50% or greater match. They have identified few haplo (partial match) candidates but I’m very reluctant to use a partial match due to high probability of side-effects, complications and Graft vs Host Disease (GVHD). I do not want to spend my last days in a hospital bed because I have a 9 year old daughter that lives me 50 percent of the time. My other alternative is to just accept AML development and live with it. Once my body transitions to AML my oncologist has few chemo treatments in mind to counter or slow it down. This way, I can continue to care for my daughter and raise her at home. I’ll be honest, each time I visit my stem cell team (Methodist Healthcare Cancer Network A Sarah Cannon Partner) I try not to ask too many questions. Too much information makes me feel uneasy. I am cognizant of the consequences once AML develops but I do my best to put those thoughts in the back of my mind so I can focus on my daughter, my wife and engineering job. “Please do not hesitate to ask questions.”

    in reply to: How long can we be on Vidaza. #46575
    Ken Yamashita
    Participant

    I’ve been undergoing Vidaza treatment since Spring of 2014 and still going. However, my blast counts have slowly progressed from 5% to now 12% (from 2014-Present) with no bone marrow donor in site. I’m 48 years old living in San Antonio, TX and working full time as a Cyber Test Engineer. My Vidaza treatments consists of treatment each month for five consecutive days. During the holidays (e.g., Thanksgiving, New Years, Christmas) I receive treatment for four days instead of five. If you have any questions, comments or concerns please don’t hesitate to ask!

    in reply to: Vidaza protocol #46574
    Ken Yamashita
    Participant

    I’ve been undergoing Vidaza treatment since Spring of 2014 and still going. However, my blast counts have slowly progressed from 5% to now 12% (from 2014-Present) with no bone marrow donor in site. I’m 48 years old living in San Antonio, TX and working full time as a Cyber Test Engineer. My Vidaza treatments consists of treatment each month for five consecutive days. During the holidays (e.g., Thanksgiving, New Years, Christmas) I receive treatment for four days instead of five. FYI: for those of you experiencing mouth sores and throat infections my solution to remedy this problem is gargling Listerine morning and night and occasionally after lunch. I haven’t developed any sores in over four months now. If you have any questions, comments or concerns please don’t hesitate to ask!

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

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