Advice for Brain mets
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Advice for Brain mets

› Forums › General Melanoma Community › Advice for Brain mets

  • Post
    • April 3, 2014 at 5:39 am
    Nickm
    Participant

    I am writing on behalf of my father who was diagnosed in June 2013 with a mets in his lymph nodes as well as his lung.  He had successful surgery in Dec 2013 and was recoverying well until he sneezed one evening, had a massive brain hemorrhage and we subsequently learned that he has two mets in his brain one of which obviously bled.  He has had wbr since and 1 tumor appears stable(the one that bled) and the other has grown minimally.  Our onco has said there is nothing left to do because of the tumor that has grown after wbr and is asking us to wait 6 weeks to see if he is stable at which point we can possibly look at systemic treatment.

    My question is to those of you with profound experience – does the oncologists approach sound right?  I believe in second opinions and also thought that the goal was to shrink rumors that are growing.(I do relize that wbr didn't work however)

    thank you in advance.

     

    m

Viewing 5 reply threads
  • Replies
      • April 3, 2014 at 11:28 pm
      benp
      Participant

      Hi Nick, 

      I'm sorry to hear about your father. How many brain mets does he have? If less than 8 or so (I had 10), then some form of targeted radiation (Gamma Knife, stereotactic radiosurgery, Cyberknife etc.) is far more effective for long term control of the individual brain tumors than WBR. I would have thought targeted radiation combined with something more systemic like a braf inhibitor if he is braf positive, or some form immonotherapy would be a far better option that just to "wait and see".

      Just my opinion though.

      Good luck,

      Ben.

      • April 3, 2014 at 11:28 pm
      benp
      Participant

      Hi Nick, 

      I'm sorry to hear about your father. How many brain mets does he have? If less than 8 or so (I had 10), then some form of targeted radiation (Gamma Knife, stereotactic radiosurgery, Cyberknife etc.) is far more effective for long term control of the individual brain tumors than WBR. I would have thought targeted radiation combined with something more systemic like a braf inhibitor if he is braf positive, or some form immonotherapy would be a far better option that just to "wait and see".

      Just my opinion though.

      Good luck,

      Ben.

      • April 3, 2014 at 11:28 pm
      benp
      Participant

      Hi Nick, 

      I'm sorry to hear about your father. How many brain mets does he have? If less than 8 or so (I had 10), then some form of targeted radiation (Gamma Knife, stereotactic radiosurgery, Cyberknife etc.) is far more effective for long term control of the individual brain tumors than WBR. I would have thought targeted radiation combined with something more systemic like a braf inhibitor if he is braf positive, or some form immonotherapy would be a far better option that just to "wait and see".

      Just my opinion though.

      Good luck,

      Ben.

        • April 4, 2014 at 2:24 am
        Nickm
        Participant

        Hey Ben,

        Thanks for your reply.  The  oncologist is saying since he didn't respond to wbr he is not a candidate for targeted treatment.  I find it strange but this is what we are being told.

        Thank you again for your response.

         

         

         

         

        • April 4, 2014 at 2:24 am
        Nickm
        Participant

        Hey Ben,

        Thanks for your reply.  The  oncologist is saying since he didn't respond to wbr he is not a candidate for targeted treatment.  I find it strange but this is what we are being told.

        Thank you again for your response.

         

         

         

         

        • April 4, 2014 at 2:24 am
        Nickm
        Participant

        Hey Ben,

        Thanks for your reply.  The  oncologist is saying since he didn't respond to wbr he is not a candidate for targeted treatment.  I find it strange but this is what we are being told.

        Thank you again for your response.

         

         

         

         

        • April 4, 2014 at 2:28 am
        Nickm
        Participant

        p.s. Ben he has two mets….

        • April 4, 2014 at 2:28 am
        Nickm
        Participant

        p.s. Ben he has two mets….

        • April 4, 2014 at 2:28 am
        Nickm
        Participant

        p.s. Ben he has two mets….

      • April 3, 2014 at 11:46 pm
      Tim–MRF
      Guest

      I agree that stereotactic radiation (gamma knife, cyber knife) makes sense when you have only a couple of brain mets. Perhaps your father had extenuating circumstances that prevented that from happening.

      I would talk with his doctor about either a trial that is focusing on brain mets–perhaps using Yervoy–or looking into the Expanded Access Protocol for Merck's anti-PD1 drug. They have rather loose criteria in that EAP for brain mets.

      I don't think you have exhausted all the options yet, based on what you reported. It is very important that if all possible your father is being seen by someone who sees a lot of melanoma patients. They are most likely to be current on the latest and best treatment options.

      Tim–MRF

       

      • April 3, 2014 at 11:46 pm
      Tim–MRF
      Guest

      I agree that stereotactic radiation (gamma knife, cyber knife) makes sense when you have only a couple of brain mets. Perhaps your father had extenuating circumstances that prevented that from happening.

      I would talk with his doctor about either a trial that is focusing on brain mets–perhaps using Yervoy–or looking into the Expanded Access Protocol for Merck's anti-PD1 drug. They have rather loose criteria in that EAP for brain mets.

      I don't think you have exhausted all the options yet, based on what you reported. It is very important that if all possible your father is being seen by someone who sees a lot of melanoma patients. They are most likely to be current on the latest and best treatment options.

      Tim–MRF

       

      • April 3, 2014 at 11:46 pm
      Tim–MRF
      Guest

      I agree that stereotactic radiation (gamma knife, cyber knife) makes sense when you have only a couple of brain mets. Perhaps your father had extenuating circumstances that prevented that from happening.

      I would talk with his doctor about either a trial that is focusing on brain mets–perhaps using Yervoy–or looking into the Expanded Access Protocol for Merck's anti-PD1 drug. They have rather loose criteria in that EAP for brain mets.

      I don't think you have exhausted all the options yet, based on what you reported. It is very important that if all possible your father is being seen by someone who sees a lot of melanoma patients. They are most likely to be current on the latest and best treatment options.

      Tim–MRF

       

        • April 4, 2014 at 2:28 am
        Nickm
        Participant

        My dad only has 2 mets…. And at the moment there are not other tumors on a scan.

        Tim thanks for the response and I fully agree about the possibility of ipi.  I agree that I don't think we have exhausted all options but am not used to this much self advocacy.

        Thanks

        • April 4, 2014 at 2:28 am
        Nickm
        Participant

        My dad only has 2 mets…. And at the moment there are not other tumors on a scan.

        Tim thanks for the response and I fully agree about the possibility of ipi.  I agree that I don't think we have exhausted all options but am not used to this much self advocacy.

        Thanks

        • April 4, 2014 at 2:28 am
        Nickm
        Participant

        My dad only has 2 mets…. And at the moment there are not other tumors on a scan.

        Tim thanks for the response and I fully agree about the possibility of ipi.  I agree that I don't think we have exhausted all options but am not used to this much self advocacy.

        Thanks

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