Home Forums Melanoma Diagnosis: Stage IV WBR second time

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  • #22029
    Angela21
    Participant

    My husband Tim has an appointment for EAP in Jacksonville in early July. His most recent MRI showed brain mets even though he had Gamma knife for multiple areas in May. His doctor is recommending WBR for the second time. He had WBR in May, 2013.

    Does anyone have knowledge of anti PD 1 working on brain mets? Has anyone had WBR twice? How did it turn out?

    Thanks,

    Angela

    #64670
    Celeste Morris
    Participant

    So sorry for all your husband’s troubles. I have not experienced whole brain radiation, but I have a great deal of data on anti-PD1, including its action in the brain. You may message me and I can let you know how to access it. Wishing you my best. Celeste

    #64671
    Catherine Poole
    Keymaster

    So far the scientific knowledge regarding agents that cross the blood brain barrier is slim. PD1 does have the capacity to rev up the entire immune system and there was some anecdotal evidence it reduced brain mets. But sadly the EAP doesn’t allow active mets in the brain, they must be stable. WBR is a lot to go through. Is Gamma knife not possible?

    #64672
    Celeste Morris
    Participant

    From: Presentation and interview given by Sznol at ASCO 2013:

    Published: Wednesday, June 05, 2013

    Melanoma: Long Overall Survival in Patients Receiving Nivolumab

    BY RABIYA S. TUMA, PHD

    “…Asked about the likelihood that the drug works on brain metastases. Sznol noted that this trial excluded patients with active brain lesions, but accepted patients with previously-treated central nervous system tumors. Therefore the answer to the question remains unknown. “But we have long-term responders who didn’t develop any brain metastases, so that suggests that maybe we are controlling disease in the brain,” he said.”

    Two abstracts were presented out of Vienna at ASCO this year (2014): Association of tumor-infiltrating lymphocytes with brain edema and overall survival in brain metastasis (No 2012) and Tumor-infiltrating lymphocytes and expression of PD-L1 in melanoma brain mets (No 9055)

    The conclusion: “Dense TILs infiltrates are common in Brain Mets and correlate with the amount of peritumoral brain edema and improved survival prognosis.” “Melanoma brain mets show considerable inflammatory infiltrates and expression of PD1 and PDL1.” “Clinical studies should investigate the value of checkpoint inhibitors in patients with melanoma brain met.”

    MY conclusion….Anti-PD1 drugs don’t have to cross the blood brain barrier…just the t cells they trigger do. Greater minds than my own seem to agree. The problem with the lack of definitive data is the fact that patients with brain mets have been and in most studies, are still, denied participation. However, Dr. Weber has discussed multiple patients whose brain mets have responded to anti-PD1 therapy. He even opened an arm of my Nivo trial in which patients with brain mets were allowed and one patient had a complete response with no other therapy.

    For what it’s worth. Wishing you and your husband my best. Celeste

    #64673
    Catherine Poole
    Keymaster

    Again these are slim numbers with only one patient having the brain met resolve with PD1. It is possibly a result of the immune system getting revved up not crossing the blood/brain barrier which hasn’t been achieved yet. Until we get more research with high numbers in studies, the answer remains a question.

    The question about WBR though remains as a difficult thing/choice and gamma knife much preferred.

    #64674
    bmorris
    Participant

    Dear Catherine I believe you should check with your science advisers. The T-cells which are reactivated by the immune checkpoint therapy do cross the blood-brain barrier. This is in fact the mechanism of ipi in the brain and by analogy that of anti-pd1 as well. For Angela this may be a moot point since active brain lesions will exclude her husband from anti-pd1 in any case. More to the point is to use SRS to treat the new lesions in the brain. WBR is now recognized as ineffective. Even multiple brain mets can be addressed with SRS. She needs a second better informed opinion. Good luck Angela and husband.

    Brent Morris

    #64675
    Catherine Poole
    Keymaster

    My scientific advisors which includes Mario Sznol, agree this is not a proven entity that PD1 or IPI have a profound effect on brain mets. If you read what Mario says, he uses the word “might” or “suggests”for this potential. You are a pediatrician/urologist? and I believe Celeste is a nurse. Your expertise doesn’t trump these scientific researchers on our board. So please, we all have a lot of work here to do, without having to deal with argumentative folks such as yourselves who have created issues here before. If this was well proven, we’d all be very happy, but it isn’t. It is speculative and we don’t want to give folks false hope. I’ve been working with melanoma patients for a very long time and have learned to discern in a judicious manner what is important in research. I’d appreciate it if you didn’t post in a negative fashion and if you both continue will have to ask you to discontinue your presence here. You end up hijacking the original post and it is counterproductive. And just another correction: WBR isn’t proven as ineffective, but it can be terribly debilitating, SRS or gamma knife can only take care of a certain number of mets, usually 4 tops. Insurance often doesn’t cover a larger number and it many mean multiple sessions. This all depends on the neurologist and their opinion.

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