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mds and fibrosis

Home forums Patient Message Board mds and fibrosis

This topic contains 2 replies, has 2 voices, and was last updated by  mdsfound 6 months, 1 week ago.

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  • #44664

    Joseph Agustin
    Participant

    I have been going to all my fathers dr appointments. he is 65 years old, ive spoken about him in past posts.
    he is in very good health otherwise and is a candidate for a stem transplant. We are working with a university hospital in our state through the help of our very good oncologist. Dads local oncologist oversees treatment till a transplant can occur, he and the university hospital are working together.
    Pops has been through 5 cycles of vidaza and some aranesp. When chemo started he was converting into AML with a white cell count of 14-15%. Since the chemo has started his count has dropped a few points, but according to the last bone marrow biopsy he has also developed myelo-fibrosis. Our transplant hospital has not been able to locate a match in the national registry. Im taking pops up there tomorrow, they want to meet with him again and run some more tests. I assume to talk about the fibrosis and possibly talk about a haplo transplant and they said some other tests. Our local doctor is awesome, he mentioned he was still worried that the mds is trying to convert, and he believes that a transplant will cure the fibrosis since he believes that the fibrosis is directly caused by the mds. Has anyone here had any experience with the fibrosis.

    #44665

    Joseph Agustin
    Participant

    treatment thus far has been vidaza, 7 days on, 3 weeks off, he has been handling it like a champ, still going to gym with me when he can. Like I mentioned, he gets a shot 1x during each cycle of aranesp. Dr said that the vidaza isnt doing its job, and they are going to change his treatment regiment up after the meeting we have with the university hospital. We have another apt with doc on tuesday, Im taking pops to the university tomorrow. He has had some nose and gum bleeding but platelet count has been decent. Blood transfusions are pretty regular now at 1.5-2 weeks apart. Blasts are pretty solid around 13 I believe, Not going up and not going down, he does transfusions at a count of 7, has been as low as three.

    #44672

    mdsfound
    Moderator

    Hi Joseph, Thank you for posting information regarding your father’s health. I know this is a difficult time for you and your father. If you would like to speak with someone who has gone through transplant or if you need anything at all, please do not hesitate to contact me at patientliaison@mds-foundation.org.

    • This reply was modified 6 months, 1 week ago by  mdsfound.
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