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Brain mets – anyone have successful treatment options?

Forums General Melanoma Community Brain mets – anyone have successful treatment options?

  • Post
    Catp
    Participant

      My father's melanoma started on a spot on his neck that the dermatologist he was visiting regularly overlooked the spot for a few years. He had one surgery in 2010 to remove the spot and then it came back months later.  The second surgery they found it also in one lymph node.  It came back again and they found it in a few lymphnodes.  Eventually he had spots in his lungs, adrenal glands and on a rib.  He has been treated at Sloan Kettering and Yale with ippi and PD1.  He had a good response to the PD1 initially where there was 80% shrinkage.  But then the spots started to grow so the dr decided to refer him to NIH for a cell therapy study.  He participated in one study but it didn't work and a lesion appeared on his brain.  He had brain surgery to remove it and was about to start a new study and 9 more lesions popped up.  He is now back at Yale and will be undergoing brain radiation this week and then determining the next treatement plan with his oncologist.  Anyone have any success stories when the disease progressed to this point or been in a similar position?  Support and guidance would be appreciated:)

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        ecc26
        Participant

          when you say "brain radiation" do you mean whole brain radiation or Gamma Knife/Cyber Knife radiation (technically called radiosurgery)? 

          I will relate my story with brain mets as briefly as I can- I started in 2011 as a stage IIIb (one lymph node involved). Close to a year and a half later and after a year of interferon, I had either an "in transit" or another lymph node (doesn't really matter at this point which it was), which was removed. 3 months later I found a tiny subcutaneous nodule on my belly (original tumor was on my back) and the biopsy came back as melanoma putting me at stage IV in Nov 2012. At this time I did not have brain mets. I spent the entire winter doing IL-2, which appeared to work, but within a month of my last dose I had many new mets, including 7 in my brain. 

          I had to do whole brain radiation about this time last year because they were also concerned about leptomeningeal disease. It worked well and all 7 were gone within 4-5 months. I was also doing Yervoy at the same time, which failed miserably in the rest of my body. Probably due to the failure of Yervoy, by December of last year (2013) I had 4 new mets (not regrowth of old ones, totally new ones). I was started on the BRAF/MEK combo (something to consider if your father's tumors are BRAF positive- you didn't list that as something he's tried) and had Gamma Knife (targeted radiation/radiosurgery) at the end of January, but they only treated the 2 larger ones. It worked on the 2 they treated, but the untreated ones grew and by May it had brought friends- 7 of them to be exact, so I had 9 new (again, not re-growth of old ones, but totally new) brain mets. I just had those, all 9 of them, treated with Gamma Knife on May 19. It'll be a few more weeks before my follow up scan, but after 3 rounds of various types of brain radiation I'm still here doing quite fine. I really wish I could get the rest of my body under control, but doing Gamma Knife every few months, really isn't that big a deal for me. Whole brain is a bit tough for a lot of people and you can only do it once if that's what he's going to do, but the targeted therapies like Gamma Knife you can do many times- it's a one day outpatient procedure vs whole brain which is every day for at least 2 weeks. Side effects are minimal for the targeted therapies, they can deliver larger doses of radiation to the tumors without affecting the normal brain tissue as much. I've had good results with both types of radiation, but I do keep getting them, so it's a bit of a mixed bag. At least it's not the same tumors coming back again and again though, so I know the therapy works for me. 

          One note on the whole brain- make sure and ask his oncologist/radiation oncologist about putting him on an alzheimer's medication for the treatment and for 6 months after. Doing that has beens shown to counteract the affects on thinking and memory that whole brain radiation can cause. I did it and I think it definitely helps (I'm 33). 

          Best of Luck to you!

          ecc26
          Participant

            when you say "brain radiation" do you mean whole brain radiation or Gamma Knife/Cyber Knife radiation (technically called radiosurgery)? 

            I will relate my story with brain mets as briefly as I can- I started in 2011 as a stage IIIb (one lymph node involved). Close to a year and a half later and after a year of interferon, I had either an "in transit" or another lymph node (doesn't really matter at this point which it was), which was removed. 3 months later I found a tiny subcutaneous nodule on my belly (original tumor was on my back) and the biopsy came back as melanoma putting me at stage IV in Nov 2012. At this time I did not have brain mets. I spent the entire winter doing IL-2, which appeared to work, but within a month of my last dose I had many new mets, including 7 in my brain. 

            I had to do whole brain radiation about this time last year because they were also concerned about leptomeningeal disease. It worked well and all 7 were gone within 4-5 months. I was also doing Yervoy at the same time, which failed miserably in the rest of my body. Probably due to the failure of Yervoy, by December of last year (2013) I had 4 new mets (not regrowth of old ones, totally new ones). I was started on the BRAF/MEK combo (something to consider if your father's tumors are BRAF positive- you didn't list that as something he's tried) and had Gamma Knife (targeted radiation/radiosurgery) at the end of January, but they only treated the 2 larger ones. It worked on the 2 they treated, but the untreated ones grew and by May it had brought friends- 7 of them to be exact, so I had 9 new (again, not re-growth of old ones, but totally new) brain mets. I just had those, all 9 of them, treated with Gamma Knife on May 19. It'll be a few more weeks before my follow up scan, but after 3 rounds of various types of brain radiation I'm still here doing quite fine. I really wish I could get the rest of my body under control, but doing Gamma Knife every few months, really isn't that big a deal for me. Whole brain is a bit tough for a lot of people and you can only do it once if that's what he's going to do, but the targeted therapies like Gamma Knife you can do many times- it's a one day outpatient procedure vs whole brain which is every day for at least 2 weeks. Side effects are minimal for the targeted therapies, they can deliver larger doses of radiation to the tumors without affecting the normal brain tissue as much. I've had good results with both types of radiation, but I do keep getting them, so it's a bit of a mixed bag. At least it's not the same tumors coming back again and again though, so I know the therapy works for me. 

            One note on the whole brain- make sure and ask his oncologist/radiation oncologist about putting him on an alzheimer's medication for the treatment and for 6 months after. Doing that has beens shown to counteract the affects on thinking and memory that whole brain radiation can cause. I did it and I think it definitely helps (I'm 33). 

            Best of Luck to you!

            ecc26
            Participant

              when you say "brain radiation" do you mean whole brain radiation or Gamma Knife/Cyber Knife radiation (technically called radiosurgery)? 

              I will relate my story with brain mets as briefly as I can- I started in 2011 as a stage IIIb (one lymph node involved). Close to a year and a half later and after a year of interferon, I had either an "in transit" or another lymph node (doesn't really matter at this point which it was), which was removed. 3 months later I found a tiny subcutaneous nodule on my belly (original tumor was on my back) and the biopsy came back as melanoma putting me at stage IV in Nov 2012. At this time I did not have brain mets. I spent the entire winter doing IL-2, which appeared to work, but within a month of my last dose I had many new mets, including 7 in my brain. 

              I had to do whole brain radiation about this time last year because they were also concerned about leptomeningeal disease. It worked well and all 7 were gone within 4-5 months. I was also doing Yervoy at the same time, which failed miserably in the rest of my body. Probably due to the failure of Yervoy, by December of last year (2013) I had 4 new mets (not regrowth of old ones, totally new ones). I was started on the BRAF/MEK combo (something to consider if your father's tumors are BRAF positive- you didn't list that as something he's tried) and had Gamma Knife (targeted radiation/radiosurgery) at the end of January, but they only treated the 2 larger ones. It worked on the 2 they treated, but the untreated ones grew and by May it had brought friends- 7 of them to be exact, so I had 9 new (again, not re-growth of old ones, but totally new) brain mets. I just had those, all 9 of them, treated with Gamma Knife on May 19. It'll be a few more weeks before my follow up scan, but after 3 rounds of various types of brain radiation I'm still here doing quite fine. I really wish I could get the rest of my body under control, but doing Gamma Knife every few months, really isn't that big a deal for me. Whole brain is a bit tough for a lot of people and you can only do it once if that's what he's going to do, but the targeted therapies like Gamma Knife you can do many times- it's a one day outpatient procedure vs whole brain which is every day for at least 2 weeks. Side effects are minimal for the targeted therapies, they can deliver larger doses of radiation to the tumors without affecting the normal brain tissue as much. I've had good results with both types of radiation, but I do keep getting them, so it's a bit of a mixed bag. At least it's not the same tumors coming back again and again though, so I know the therapy works for me. 

              One note on the whole brain- make sure and ask his oncologist/radiation oncologist about putting him on an alzheimer's medication for the treatment and for 6 months after. Doing that has beens shown to counteract the affects on thinking and memory that whole brain radiation can cause. I did it and I think it definitely helps (I'm 33). 

              Best of Luck to you!

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