Wayhelen

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  • in reply to: Oregon family #101211
    Wayhelen
    Participant

    Hi Hannah,

    I read through this thread and also saw your post on the survivor story page too. Thank you for sharing.

    My daughter also has the IDH1 mutation (as well as PBMR1). I’m interested in the supplements your Mom took. My daughter is taking D and B12. If you have time, can you tell me about the astragalus (capsules)and why milk thistle furthest away from the infusions. My daughter is vegan (super healthy vegan..not a junk-food vegan) and we are looking at supplements.

     

    Thank you,

     

    Helen

     

     

    in reply to: Any survivor stories for inoperable stage IV ICC? #101209
    Wayhelen
    Participant

    Thank you Hannah for sharing your Mom’s story. That gives us hope. What does open-and-close surgery mean?

    in reply to: Any survivor stories for inoperable stage IV ICC? #101204
    Wayhelen
    Participant

    Thanks for responding Mary. My 24 year old otherwise healthy daughter was just recently diagnosed. We did get a second opinion from a doctor that is connected to a major cancer center and on his recommendation, we are working on a third. We know her gene mutations from genomic testing and she had blood draws for genetic testing as well (those results pending). Melinda from CC foundation reached out to us after she saw my FB post on the CC immunotherapy and gene therapy page so I have her as a contact as well.

    She started on Gem/Cis and was due for second dose on 8/2 but her WBC count was too low. I’m asking for growth factor to boost the WBC.

    I posted this thread as I want to share success stories for people’s whose diagnosis are similar. I did find some via the FB page.

    Thanks again for the response.

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