Brain Mets

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  • Post
    • August 31, 2014 at 11:29 pm
    Schwan-a-cure
    Participant

      Hi Everyone,

      My husband Joe (30) was diagnosed with melanoma at stage IIIb a little over a year and a half ago.   Had surgery to remove and lymphnodes out then was on a trial of yervoy for about 3 rounds until side effects put him in the hospital for a month.  At that point everything was coming back clear until 6 months later when we found a few brain mets and 3 spots in the chest.   We did whole head radiation and was put on zelboraf (he is BRAF positive).  Zelboraf seemed to work and cleared up the chest, but the brain mets have been annoyingly difficult.   He was put on temador and did radio surgery.   Things seemed to be doing well until the end of this July.   

      We found that the temador wasn't working and that more mets had been popping up.  Radio surgery again on the biggest ones.   We have also done a PET recently and found 3 small spots back again ( 2 in liver and 1 in thigh).   His oncologist has started him on BCNU.

      Then the biggest blow this week:   MRI shows more brain mets popping up and the radiologist essentially said that he didn't know where to start since there were so many (I believe about 40 small total now…)   and that another round of whole head was out and that the radio surgery wasn't really an option for fear of long term damage.   

      What I was hoping to get from all of you was some advice:   Any reccomended drugs or treatments that you have had good experience with knocking out brain mets? Drug combinations? Should I look for a second oppionion from another radiologist or is this pretty common?   We are happy with our oncologist (at an amazing cancer center John Stoddard in Des Moines, IA) but I'm wondering if there might be a better melanoma specialist or center we should look into.   Any advice would be great.  I'm curious about the cancer treatment centers of america but I'm a bit skeptical since I see so many commercials on tv.   Also,   I'm interested in any complementary or homeopathic therapies you might suggest. 

       

      I know things are looking rough… and that I might be grasping but I have to believe that we can still fight this.

      Thanks,

      Allison 

    Viewing 14 reply threads
    • Replies
        • September 1, 2014 at 12:26 am
        Marianne quinn
        Participant

          I am so sorry. My only advice is to contact NIH. Perhaps your oncologist can assist with that. Sending good thoughts your way.

          • September 1, 2014 at 12:26 am
          Marianne quinn
          Participant

            I am so sorry. My only advice is to contact NIH. Perhaps your oncologist can assist with that. Sending good thoughts your way.

            • September 1, 2014 at 12:26 am
            Marianne quinn
            Participant

              I am so sorry. My only advice is to contact NIH. Perhaps your oncologist can assist with that. Sending good thoughts your way.

              • September 1, 2014 at 2:42 pm
              arthurjedi007
              Participant

                Yes NIH would be good. Since you are already going to Des Moines maybe a talk with Dr. Markovic or one of their doctors at Mayo in Rochester MN might give some ideas to treatment. I'm getting PD1 via Dr. Kasi there. Sorry I really don't know a treatment except maybe the Tafinlar/Mekenist combo but I don't know how it does for the brain. PD1 and Yervoy are able to cross the brain barrier cause it is your own immune system cells.

                Artie

                • September 1, 2014 at 2:42 pm
                arthurjedi007
                Participant

                  Yes NIH would be good. Since you are already going to Des Moines maybe a talk with Dr. Markovic or one of their doctors at Mayo in Rochester MN might give some ideas to treatment. I'm getting PD1 via Dr. Kasi there. Sorry I really don't know a treatment except maybe the Tafinlar/Mekenist combo but I don't know how it does for the brain. PD1 and Yervoy are able to cross the brain barrier cause it is your own immune system cells.

                  Artie

                  • September 1, 2014 at 2:42 pm
                  arthurjedi007
                  Participant

                    Yes NIH would be good. Since you are already going to Des Moines maybe a talk with Dr. Markovic or one of their doctors at Mayo in Rochester MN might give some ideas to treatment. I'm getting PD1 via Dr. Kasi there. Sorry I really don't know a treatment except maybe the Tafinlar/Mekenist combo but I don't know how it does for the brain. PD1 and Yervoy are able to cross the brain barrier cause it is your own immune system cells.

                    Artie

                    • September 1, 2014 at 4:10 pm
                    kylez
                    Participant

                      Second opinions at a comprehensive canter would be valuable and maybe the best next step you could take at this point. Mayo is one, like Artie recommends from his own direct experience. Could also look at Holden Comprehensive Cancer Center in Iowa City slightly closer by but I have no experience with them. Impress on them the advanced stage of your husband's cancer. Or try with both. Not so sure about NIH, my recollection talking with them is they didn't want to see anybody with more than 3 brain mets. For an in-person appointment at Mayo and/or Holden they would almost certainly ask you to get his scans on CDs to bring. Try to get them to ask the doctor/melanoma specialist oncologist to talk with you on the phone first, if only briefly — you may need to break through the admin staff. Iimpress on them the very advanced stage of cancer spread. 

                      Kyle

                      • September 1, 2014 at 4:10 pm
                      kylez
                      Participant

                        Second opinions at a comprehensive canter would be valuable and maybe the best next step you could take at this point. Mayo is one, like Artie recommends from his own direct experience. Could also look at Holden Comprehensive Cancer Center in Iowa City slightly closer by but I have no experience with them. Impress on them the advanced stage of your husband's cancer. Or try with both. Not so sure about NIH, my recollection talking with them is they didn't want to see anybody with more than 3 brain mets. For an in-person appointment at Mayo and/or Holden they would almost certainly ask you to get his scans on CDs to bring. Try to get them to ask the doctor/melanoma specialist oncologist to talk with you on the phone first, if only briefly — you may need to break through the admin staff. Iimpress on them the very advanced stage of cancer spread. 

                        Kyle

                        • September 1, 2014 at 4:10 pm
                        kylez
                        Participant

                          Second opinions at a comprehensive canter would be valuable and maybe the best next step you could take at this point. Mayo is one, like Artie recommends from his own direct experience. Could also look at Holden Comprehensive Cancer Center in Iowa City slightly closer by but I have no experience with them. Impress on them the advanced stage of your husband's cancer. Or try with both. Not so sure about NIH, my recollection talking with them is they didn't want to see anybody with more than 3 brain mets. For an in-person appointment at Mayo and/or Holden they would almost certainly ask you to get his scans on CDs to bring. Try to get them to ask the doctor/melanoma specialist oncologist to talk with you on the phone first, if only briefly — you may need to break through the admin staff. Iimpress on them the very advanced stage of cancer spread. 

                          Kyle

                          • September 2, 2014 at 2:45 am
                          LuckyMan51
                          Participant

                            Hi Alison,

                            Have you looked into the anti pd-1 drugs? I was ok with Yervoy and SRS but when I was exploring Yervoy vs Anti pd-1 options one couldn't get anti pd-1 treatment if you had brain mets. The oncologists I interviewed were all pretty excited about anti pd-1.  I think some trials and the expanded access programs that now include patients with brain mets. I see an oncologist at Memorial Sloan Kettering in NYC who is a melanoma specialist. Is your oncologist a melanoma specialist? If not I think it would serve your husband well to go that route. Good luck. Keep the faith. There are some great new drugs and combination drug therapies rolling out. 

                            • September 2, 2014 at 2:45 am
                            LuckyMan51
                            Participant

                              Hi Alison,

                              Have you looked into the anti pd-1 drugs? I was ok with Yervoy and SRS but when I was exploring Yervoy vs Anti pd-1 options one couldn't get anti pd-1 treatment if you had brain mets. The oncologists I interviewed were all pretty excited about anti pd-1.  I think some trials and the expanded access programs that now include patients with brain mets. I see an oncologist at Memorial Sloan Kettering in NYC who is a melanoma specialist. Is your oncologist a melanoma specialist? If not I think it would serve your husband well to go that route. Good luck. Keep the faith. There are some great new drugs and combination drug therapies rolling out. 

                              • September 2, 2014 at 2:45 am
                              LuckyMan51
                              Participant

                                Hi Alison,

                                Have you looked into the anti pd-1 drugs? I was ok with Yervoy and SRS but when I was exploring Yervoy vs Anti pd-1 options one couldn't get anti pd-1 treatment if you had brain mets. The oncologists I interviewed were all pretty excited about anti pd-1.  I think some trials and the expanded access programs that now include patients with brain mets. I see an oncologist at Memorial Sloan Kettering in NYC who is a melanoma specialist. Is your oncologist a melanoma specialist? If not I think it would serve your husband well to go that route. Good luck. Keep the faith. There are some great new drugs and combination drug therapies rolling out. 

                                • September 2, 2014 at 4:54 am
                                Schwan-a-cure
                                Participant

                                  Thank you so much everyone!  I could barely wait for Labor Day to be over to make some calls tomorrow.  

                                  Thanks,

                                  Allison 

                                  • September 2, 2014 at 4:54 am
                                  Schwan-a-cure
                                  Participant

                                    Thank you so much everyone!  I could barely wait for Labor Day to be over to make some calls tomorrow.  

                                    Thanks,

                                    Allison 

                                    • September 2, 2014 at 4:54 am
                                    Schwan-a-cure
                                    Participant

                                      Thank you so much everyone!  I could barely wait for Labor Day to be over to make some calls tomorrow.  

                                      Thanks,

                                      Allison 

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