MRF-Logo2019-Horizontal-RGB
Advice for Brain mets
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

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 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 11:28 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 11:46 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

                                  • 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

                                       

                                  Viewing 5 reply threads
                                  • You must be logged in to reply to this topic.
                                  About the MRF Patient Forum

                                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                  The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                  Popular Topics