Home Forums Melanoma Diagnosis: Stage IV New Brain Mets Exclude Husband from PD1 trial. HELP!

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  • #21220
    Sandalwood36
    Participant

    My husband (BRAF neg) was in the process of testing for admission to anti-pd1 trial at MSKCC & found out today that he now has 5 small brain mets. He will probably be getting radiation for the brain mets, but does anyone know if you can get anti pd1 ANYWHERE if you have brain mets (internationally perhaps)?

    He unfortunately has multiple large tumors in his stomach & liver that have continued to grow after Ippi, radiation (to stop stomach tumor bleeding) & chemo.

    Not sure his liver will hold up long enough to shrink/control(?) brain mets & then get into PD1 trial.

    We are DESPERATE for info/suggestions & open to ANY possible treatments … :(

    #60271
    kylez
    Participant

    I’m sorry to your husband and you are going through that. I’ve had a taste of that desperateness at one point with brain mets. Are they planning focused narrow radiation like Gamma Knife or CyberKnife as opposed to whole brain radiation/WBR?

    Hopefully Catherine will see this soon because she really knows the ins and outs of PD1 trials. At least some of the BMS nivolumab/anti-pd1 trials accept inactive, treated brain mets after some kind of waiting period to prove the mets are inactive. I believe the patient would typically need to get radiation therapy like your husband is, and then have the brain mets inactive (stable? not sure) for some amount of time. The waiting after treatment might be the weak point of this approach.

    There is a “melanoma clinical trial finder” service, I don’t know if it’s wrong to link to another organization’s web site, but I tried it once and it seemed excellent. It’s done by a third-party company, emergingMed: http://www.melanoma.org/learn-more/patient-reference-guide/melanoma%20clinical%20trial%20finder” class=”bbcode_url”>http://www.melanoma.org/learn-more/patient-reference-guide/melanoma%20clinical%20trial%20finder They might find some other alternative to consider besides anti-PD1, although anti-PD1 is certainly at the top of lots of peoples’ lists including my own oncologist.

    It has really upsets me and some others in your husband’s situation that a brain met excludes people from treatment. Wouldn’t a treatment’s success or failure be best evaluated under “real world” conditions?

    Anyway, good luck and wishing you fast results for your next step.

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