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Treating Brain METs

Forums Mucosal Melanoma Community Treating Brain METs

  • Post
    JohnA
    Participant

      Hey folks, 

      My wife has metastatic mucosal melanoma in liver, lungs, and rib, and she has what looks like a very small brain met or perhaps it's a previous hemorrage that is deep inside her brain.  

      1 doc is not sure it is indicative of melanoma and so not sure about doing SRS or taking a wait and see to observe how Ipi-Nivo works on it.  She's about to start the combo and they could observe after 4 weeks or so to see if SRS is necessary.

      Another doc suggests do the SRS right away and start the combo right away.

      We're talking about major institutions with advanced melanoma teams: Johns Hopkins and U of Michigan.

      So, given there's a slight discrepancy, we're considering seeing someone at Sloan Kettering. However, my wife is feeling super fatigued and just not wanting to travel for another appt. 

      Questions:

      1) what do you think about getting a 3rd opinion? Given the places we're considering, is there somewhere we've missed that would be especially experienced at dealing with brain METs? I've gotten the impression that SRS is so common, that it's done very well in most major medical centers.

      2) Does anyone know if there are data to suggest that wait and see would be a good or bad idea in a case like this?  

      3) We know SRS is enhanced by Ipi-Nivo, but does sequence matter? That is, could you do SRS after round 1 or round 2 of Ipi-Nivo and still get the bumb, or do you need to do SRS first before starting the combo?

      Thanks for your input!

      John

    Viewing 8 reply threads
    • Replies
        ed williams
        Participant

          Hi John, there is a webinar series from Jan of 2016 on Onclive that features, Dr.Weber, Dr.Jason Luke, Dr.Rene Gonzalez and Dr. Keith T Flaherty. If you go to youtube and type in " Radiation Therapy and Abscopal effect in Melanoma Treatment" plus Weber or Jason Luke's name it will bring you to the series. There are other topics as well in the series including "Duration of Immunotherapy in Melanoma " and " Combination Immunotherapy".  Weber brings up some serious concerns about being carefull on the timing of the radiation and possible future problems with swelling 2 and 3 years down the road. I hope the series is helpfull in making the decision. Wishing you and your wife the best!!! Ed

            JohnA
            Participant

              Fanastic series of videos, thanks Ed.

              I did not catch his concern around radiation, other than the fact that they have seen radiation necrosis in some patients 2 or 3 years after treatment which was mistaken as new tumors.  Did I miss something?

              Thanks-

              ed williams
              Participant

                Weber is seeing at his institution this necrosis showing up when patients are getting radiation and Immunotherapies. It seems to be something new to consider in the decision making process. Something that they didn't talk about and I have heard before is, due to the fact Melanoma patients are living longer now because of advances in Immunotherapies and targeted therapies Radiologist are now starting to see the long term effects of the radiation. A few years ago if you have brain mets the prognonsis was 4 or 5 months and many people were given whole brain radiation to help in a pallative way. Research is now showing that whole brain radiation lead to higher levels of cognitive decline when compared to SRS treatments. I know you are trying to make some very big decisions and my hope was to supply you with some more information. Best wishes!!! Ed

                ed williams
                Participant

                  Weber is seeing at his institution this necrosis showing up when patients are getting radiation and Immunotherapies. It seems to be something new to consider in the decision making process. Something that they didn't talk about and I have heard before is, due to the fact Melanoma patients are living longer now because of advances in Immunotherapies and targeted therapies Radiologist are now starting to see the long term effects of the radiation. A few years ago if you have brain mets the prognonsis was 4 or 5 months and many people were given whole brain radiation to help in a pallative way. Research is now showing that whole brain radiation lead to higher levels of cognitive decline when compared to SRS treatments. I know you are trying to make some very big decisions and my hope was to supply you with some more information. Best wishes!!! Ed

                  ed williams
                  Participant

                    Weber is seeing at his institution this necrosis showing up when patients are getting radiation and Immunotherapies. It seems to be something new to consider in the decision making process. Something that they didn't talk about and I have heard before is, due to the fact Melanoma patients are living longer now because of advances in Immunotherapies and targeted therapies Radiologist are now starting to see the long term effects of the radiation. A few years ago if you have brain mets the prognonsis was 4 or 5 months and many people were given whole brain radiation to help in a pallative way. Research is now showing that whole brain radiation lead to higher levels of cognitive decline when compared to SRS treatments. I know you are trying to make some very big decisions and my hope was to supply you with some more information. Best wishes!!! Ed

                    JohnA
                    Participant

                      Fanastic series of videos, thanks Ed.

                      I did not catch his concern around radiation, other than the fact that they have seen radiation necrosis in some patients 2 or 3 years after treatment which was mistaken as new tumors.  Did I miss something?

                      Thanks-

                      JohnA
                      Participant

                        Fanastic series of videos, thanks Ed.

                        I did not catch his concern around radiation, other than the fact that they have seen radiation necrosis in some patients 2 or 3 years after treatment which was mistaken as new tumors.  Did I miss something?

                        Thanks-

                      ed williams
                      Participant

                        Hi John, there is a webinar series from Jan of 2016 on Onclive that features, Dr.Weber, Dr.Jason Luke, Dr.Rene Gonzalez and Dr. Keith T Flaherty. If you go to youtube and type in " Radiation Therapy and Abscopal effect in Melanoma Treatment" plus Weber or Jason Luke's name it will bring you to the series. There are other topics as well in the series including "Duration of Immunotherapy in Melanoma " and " Combination Immunotherapy".  Weber brings up some serious concerns about being carefull on the timing of the radiation and possible future problems with swelling 2 and 3 years down the road. I hope the series is helpfull in making the decision. Wishing you and your wife the best!!! Ed

                        ed williams
                        Participant

                          Hi John, there is a webinar series from Jan of 2016 on Onclive that features, Dr.Weber, Dr.Jason Luke, Dr.Rene Gonzalez and Dr. Keith T Flaherty. If you go to youtube and type in " Radiation Therapy and Abscopal effect in Melanoma Treatment" plus Weber or Jason Luke's name it will bring you to the series. There are other topics as well in the series including "Duration of Immunotherapy in Melanoma " and " Combination Immunotherapy".  Weber brings up some serious concerns about being carefull on the timing of the radiation and possible future problems with swelling 2 and 3 years down the road. I hope the series is helpfull in making the decision. Wishing you and your wife the best!!! Ed

                          Maria C
                          Participant

                            John, your question about sequence is the most pertinent one – though it sounds like your wife's cancer is advancing and the ipi/nivo is of essence at this point. It's my understanding, as a patient who is also mucosal & has brain mets, that both the SRS and the infusion can be administered within the same week or just a week apart, so  not sure delaying with yet another 3rd opinion would be of any real help. 

                            You and your wife are in my prayers – I do hope things turn around for her quickly!!

                            Maria C
                            Participant

                              John, your question about sequence is the most pertinent one – though it sounds like your wife's cancer is advancing and the ipi/nivo is of essence at this point. It's my understanding, as a patient who is also mucosal & has brain mets, that both the SRS and the infusion can be administered within the same week or just a week apart, so  not sure delaying with yet another 3rd opinion would be of any real help. 

                              You and your wife are in my prayers – I do hope things turn around for her quickly!!

                              Maria C
                              Participant

                                John, your question about sequence is the most pertinent one – though it sounds like your wife's cancer is advancing and the ipi/nivo is of essence at this point. It's my understanding, as a patient who is also mucosal & has brain mets, that both the SRS and the infusion can be administered within the same week or just a week apart, so  not sure delaying with yet another 3rd opinion would be of any real help. 

                                You and your wife are in my prayers – I do hope things turn around for her quickly!!

                                Mat
                                Participant

                                  John, if her brain met is that small, then the amount of radiation they will use is unlikely to cause either necrosis or an abscopal effect.  Watch and wait for one scan cycle of 8 weeks while on ipi-nivo is probably reasonable–particularly since they know the met is in a loction and of a size where they can uses SRS (versus surgery).  If she gets SRS, I believe that the MRI machine is "stronger" and they might be able to get a better look at it before they zap it.

                                  Mat
                                  Participant

                                    John, if her brain met is that small, then the amount of radiation they will use is unlikely to cause either necrosis or an abscopal effect.  Watch and wait for one scan cycle of 8 weeks while on ipi-nivo is probably reasonable–particularly since they know the met is in a loction and of a size where they can uses SRS (versus surgery).  If she gets SRS, I believe that the MRI machine is "stronger" and they might be able to get a better look at it before they zap it.

                                    Mat
                                    Participant

                                      John, if her brain met is that small, then the amount of radiation they will use is unlikely to cause either necrosis or an abscopal effect.  Watch and wait for one scan cycle of 8 weeks while on ipi-nivo is probably reasonable–particularly since they know the met is in a loction and of a size where they can uses SRS (versus surgery).  If she gets SRS, I believe that the MRI machine is "stronger" and they might be able to get a better look at it before they zap it.

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