Home Forums Melanoma Diagnosis: Stage IV New member : advice on next step after zelboraf

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  • #21100
    Kay6789
    Participant

    Hi I am new to this forum but have been reading almost daily since my husbands diagnosis in may 2012. Our story in short is: My husband had mole removed from behind his left knee about 7 years ago, it was melanoma, he had some skin grafting and regular check ups for 5 years, after which he was signed off as all ok, untill may of last year when severe headaches got more and more untill one night he was in extreme pain with constant vomiting, I took him to A&E where very quickly he started losing his ability to talk and lost his balance while his pain just got worse, after a host of tests, scans lots of doctors racing around he was diagnosed withe a tumour in his brain the size of a small manderin!!! After more scans and tests it was reviled that he had wide spread metatastic melanoma. He was transferred to a specialised hospital wher he underwent the removal of the tumour which thankfully went smoothly and he recovered well. He was then put on zelboraf which up until now has worked wonders. His last set of scans have lit up 2 very small (less than 3m) in his brain but the rest of his tumours in his body are still responding, so it has been suggested to stop z do gamma knife and start ippi? With the thoughts of going back to z if needed if ippi doesn’t work? I would really love to here from any one else with any more helpfull information or suggestions? We are from England and I don’t think we are as advanced with all the trials I have read about on here, any help would be really appreciated, my husband is 46 and is otherwise in very good health with no symptoms of this evil monster! Thank you

    #59597
    Catherine Poole
    Keymaster

    Gamma knife would be a good approach to zap those brain mets. If he continues to respond to IPI than I would continue with that. There is a great doctor at Oxford if you want another opinion on how to proceed. Otherwise, it is true that therapies are limited in UK right now, but that should change in the near future.

    #59598
    Kay6789
    Participant

    Thank you, thought we were on the right track just makes you stop in your tracks when something else crops up when zelboraf has been so effective but not without it’s problems! Reading this forum over the last 10 months has been so helpfull, and always refere to it when in doubt! Thank you

    Kay

    #59599
    kylez
    Participant

    Hi Kay,

    I was never on Zelboraf because I’m BRAF negative.

    However, my second round of brain surgeries in June 2011 — 4 tumors treated — 2 resected and tumor beds Gamma Knife’d, the 2 smaller ones treated with Gamma Knife alone. Then I started IPI 11 days after Gamma Knife. My docs wanted to start it almost as soon as possible after Gamma Knife. Knock on wood I’ve been stable for 20 months now. My docs think I probably am getting benefit from the IPI. So the strategy sounds good to me — it’s what my doctors did! They’re considered a top 5 U.S. neurosurgery center.

    The sizes of those tumors in the brain being very small, they sound like great candidates for Gamma Knife from what I understand from Catherine’s webinar on this web site with the head of the Yale Gamma Knife center. The 2 of mine treated with Gamma Knife alone were, I think, 3mm and 1cm.

    The Gamma Knife http://www.elekta.com/patients/treatment-information/treatment-centers/leksell-gamma-knife/europe.html” class=”bbcode_url”>http://www.elekta.com/patients/treatment-information/treatment-centers/leksell-gamma-knife/europe.html web site lists 5 Gamma Knife systems in the U.K. —

  • St. James in Leeds

  • Cromwell in London
  • St. Barts in London
  • Royal Hampshire in Sheffield
  • BMI Thornbury in Sheffield
#59600
buffcody
Participant

My original metastasis was a tumor in the lung. The tumor was resected. Then, 3 months later, 2 small tumors were discovered on my brain. The hospital did not have gamma knife, but another SRS procedure was chosen. However, my oncologist opted to start ipi 6 weeks or so before the SRS to heighten the ipi’s effect. I finished my ipi course over two months ago and initial scans have shown that the brain tumors have become inactive, and, if any spread has ocurred, it has been limited to a small sub-q in one buttock. The idea of waiting on the application of gamma knife until after ipi has begun to work is certainly not defined best treatment, but it might be worth inquiring about. Best of luck/grace to you both.

#59601
Kay6789
Participant

Hi Kylez

Thank you for replying, you certainly have been through the mill with those blasted brain mets! Glad all is going well and being stable for 11 months is fantastic! Well done, just hoping we can get this sorted ASAP, we have a meeting next Thursday with the gamma knife Dr so I guess it will be soon after that? Thank you and keep the good work up!

Kay

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