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On Yervoy with brain mets after Vem failure
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On Yervoy with brain mets after Vem failure

› Forums › General Melanoma Community › On Yervoy with brain mets after Vem failure

  • Post
    • July 31, 2014 at 7:23 pm
    madhatter84
    Participant

      Hi everyone,

       

      I haven't posted on here before – living in the UK and on trials with the NHS. My blog gives a good overview but basically I was diagnosed Stage 2 in May 2011 and that was upped to Stage 4 in Sept 2013 with 2 brain tumours removed and an inoperable pancreatic tumour diagnosed. I was then put on Vem however have recently been informed that I've got 5 brain tumours after having had WBR in May 2014. They are small but present (told a couple of weeks ago). I've now been pulled off Vem and put onto Yervoy – had my first infusion on Monday and so far no side effects with the hope of Gamma on the 5 tumours in my brain if they haven't grown. 

      My question is are there any experiences of Yervoy and in particular with brain mets? They are the ones that are worrying me quite a bit. I still am working full time and at the moment haven't got any side effects from them (had a few headaches but no mobility or speech issues which is what I really want to avoid). 

      Thanks in advance!

       

      Andrew

    Viewing 5 reply threads
    • Replies
        • July 31, 2014 at 8:12 pm
        hannahcopeland1
        Participant

          Hi Andrew, 

          Ive had melanoma for 3 years now. Im 27. it became stage 4 last year when it showed up in my lungs. now i have a very rare brain disease called leptomeningeal that is very hard to treat and the prognosis isnt great. But Im hanging in there. My treatments have been surgeries, zelboraf(VEM), mek/braf combo, then ipi(YERVOY), WBR, and temodar and i still have lung mets, leptomeningeal and some mets in my skull and spine. zelboraf helped shrink my lung tumors for about 5 months. i then switched to the mek/braf combo for the better side effects but my lung mets started to grow again. during the 1 month "wash out" period bt that and a PD1 trial i was enrolled in, i was given the devastating news that it had reached my brain and in a rare and extremely dangerous form. i was kicked out of the PD1 trial and had to start ipi immediately. a day after my diagnosis of the brain. my fiance and i went to the courthouse and got married. a week later i was in the hospital due to massive migraines and throwing up. they had to do WBR and chemo while i was there. ive just recently finished 4 rounds of ipi and 3 rounds of temodar and im feeling good. Scans on Monday will tell me where i really stand. 

          So YES, i have been on Yervoy for the past few months, but have been taking chemo for the brain as well. apparently ipi can get to the brain. they are saying that pd1 can as well which is great. I wanted to share with you one of the reasons i think ive been feeling so well. So in case you do get side affects you can prepare yourself. ipi just makes me tired, and i have gotten a few full body rashes that itch but have gone away on there own. nothing like vem rashes. its the neorological symptoms that really suck…

          my right leg has had tingling at a few different levels, and most recently has had twitching in the toes that drives me crazy. ive had back pains, upper middle lower, neck pains, headaches, dizziness, exhaustion. what has helped me the most is my chiropracter! he happens to be my husbands father, so im lucky! he comes to meet me twice and sometimes 3 times a week. he practices reiki as well and has used it with me. it has helped me IMMENSELY. Ive had lumps in my neck that have dissappeared, my toe twitch and tingle has dissappeared. my back pains have gone, which all improve my headaches and overall physical well-being. 

          its really amazing and i truly think that it is going to help my recovery and my overall life. 

           

          good luck to you with everything. i hope this info an help you feel better!

            • August 1, 2014 at 2:42 pm
            ed williams
            Participant

              Thanks for sharing Hannah!!!!! I hope things work out for you and Andrew. Ed

              • August 1, 2014 at 2:42 pm
              ed williams
              Participant

                Thanks for sharing Hannah!!!!! I hope things work out for you and Andrew. Ed

                • August 1, 2014 at 2:42 pm
                ed williams
                Participant

                  Thanks for sharing Hannah!!!!! I hope things work out for you and Andrew. Ed

                • July 31, 2014 at 8:12 pm
                hannahcopeland1
                Participant

                  Hi Andrew, 

                  Ive had melanoma for 3 years now. Im 27. it became stage 4 last year when it showed up in my lungs. now i have a very rare brain disease called leptomeningeal that is very hard to treat and the prognosis isnt great. But Im hanging in there. My treatments have been surgeries, zelboraf(VEM), mek/braf combo, then ipi(YERVOY), WBR, and temodar and i still have lung mets, leptomeningeal and some mets in my skull and spine. zelboraf helped shrink my lung tumors for about 5 months. i then switched to the mek/braf combo for the better side effects but my lung mets started to grow again. during the 1 month "wash out" period bt that and a PD1 trial i was enrolled in, i was given the devastating news that it had reached my brain and in a rare and extremely dangerous form. i was kicked out of the PD1 trial and had to start ipi immediately. a day after my diagnosis of the brain. my fiance and i went to the courthouse and got married. a week later i was in the hospital due to massive migraines and throwing up. they had to do WBR and chemo while i was there. ive just recently finished 4 rounds of ipi and 3 rounds of temodar and im feeling good. Scans on Monday will tell me where i really stand. 

                  So YES, i have been on Yervoy for the past few months, but have been taking chemo for the brain as well. apparently ipi can get to the brain. they are saying that pd1 can as well which is great. I wanted to share with you one of the reasons i think ive been feeling so well. So in case you do get side affects you can prepare yourself. ipi just makes me tired, and i have gotten a few full body rashes that itch but have gone away on there own. nothing like vem rashes. its the neorological symptoms that really suck…

                  my right leg has had tingling at a few different levels, and most recently has had twitching in the toes that drives me crazy. ive had back pains, upper middle lower, neck pains, headaches, dizziness, exhaustion. what has helped me the most is my chiropracter! he happens to be my husbands father, so im lucky! he comes to meet me twice and sometimes 3 times a week. he practices reiki as well and has used it with me. it has helped me IMMENSELY. Ive had lumps in my neck that have dissappeared, my toe twitch and tingle has dissappeared. my back pains have gone, which all improve my headaches and overall physical well-being. 

                  its really amazing and i truly think that it is going to help my recovery and my overall life. 

                   

                  good luck to you with everything. i hope this info an help you feel better!

                  • July 31, 2014 at 8:12 pm
                  hannahcopeland1
                  Participant

                    Hi Andrew, 

                    Ive had melanoma for 3 years now. Im 27. it became stage 4 last year when it showed up in my lungs. now i have a very rare brain disease called leptomeningeal that is very hard to treat and the prognosis isnt great. But Im hanging in there. My treatments have been surgeries, zelboraf(VEM), mek/braf combo, then ipi(YERVOY), WBR, and temodar and i still have lung mets, leptomeningeal and some mets in my skull and spine. zelboraf helped shrink my lung tumors for about 5 months. i then switched to the mek/braf combo for the better side effects but my lung mets started to grow again. during the 1 month "wash out" period bt that and a PD1 trial i was enrolled in, i was given the devastating news that it had reached my brain and in a rare and extremely dangerous form. i was kicked out of the PD1 trial and had to start ipi immediately. a day after my diagnosis of the brain. my fiance and i went to the courthouse and got married. a week later i was in the hospital due to massive migraines and throwing up. they had to do WBR and chemo while i was there. ive just recently finished 4 rounds of ipi and 3 rounds of temodar and im feeling good. Scans on Monday will tell me where i really stand. 

                    So YES, i have been on Yervoy for the past few months, but have been taking chemo for the brain as well. apparently ipi can get to the brain. they are saying that pd1 can as well which is great. I wanted to share with you one of the reasons i think ive been feeling so well. So in case you do get side affects you can prepare yourself. ipi just makes me tired, and i have gotten a few full body rashes that itch but have gone away on there own. nothing like vem rashes. its the neorological symptoms that really suck…

                    my right leg has had tingling at a few different levels, and most recently has had twitching in the toes that drives me crazy. ive had back pains, upper middle lower, neck pains, headaches, dizziness, exhaustion. what has helped me the most is my chiropracter! he happens to be my husbands father, so im lucky! he comes to meet me twice and sometimes 3 times a week. he practices reiki as well and has used it with me. it has helped me IMMENSELY. Ive had lumps in my neck that have dissappeared, my toe twitch and tingle has dissappeared. my back pains have gone, which all improve my headaches and overall physical well-being. 

                    its really amazing and i truly think that it is going to help my recovery and my overall life. 

                     

                    good luck to you with everything. i hope this info an help you feel better!

                    • August 1, 2014 at 3:31 pm
                    arthurjedi007
                    Participant

                      Yes. Yervoy, PD1 and all immunotherapy medicines can work for the brain as well as every area in the body. The reason is the medicine attaches to your white blood cells. In the case of Yervoy it modifies that cell for CTLA-4. PD1 for the pd1. Now it is an actived T-Cell that hunts for cancer everywhere.

                      I've also done the zelboraf and tafinlar/mekenist combo. the zel and taf are gene targeted therapies where the medicine looks for a cell with the braf mutation and basically makes it a normal cell again which then goes away normally. However I do not know if they affect the brain. I dunno how mekenist works but it inhibits the growth of cells somehow.

                      But YES YES YES Yervoy and PD1 can heal the brain because they work on your white blood cells that then go to the brain and everywhere.

                      Celeste has lots more detail about it in her blog: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

                       

                      • August 1, 2014 at 3:31 pm
                      arthurjedi007
                      Participant

                        Yes. Yervoy, PD1 and all immunotherapy medicines can work for the brain as well as every area in the body. The reason is the medicine attaches to your white blood cells. In the case of Yervoy it modifies that cell for CTLA-4. PD1 for the pd1. Now it is an actived T-Cell that hunts for cancer everywhere.

                        I've also done the zelboraf and tafinlar/mekenist combo. the zel and taf are gene targeted therapies where the medicine looks for a cell with the braf mutation and basically makes it a normal cell again which then goes away normally. However I do not know if they affect the brain. I dunno how mekenist works but it inhibits the growth of cells somehow.

                        But YES YES YES Yervoy and PD1 can heal the brain because they work on your white blood cells that then go to the brain and everywhere.

                        Celeste has lots more detail about it in her blog: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

                         

                          • August 3, 2014 at 1:33 pm
                          Bubbles
                          Participant

                            Well put, Artie!!! Sorry, for what you are going through, Andrew, however here are some quotes from studies that, especially if you are able to attain SRS to your brain mets, may be pertinent to your situation:

                            From ASCO 2013:

                            Phase II trial of ipi monotherapy in melanoma patients with brain metastases.  CONCLUSION:  Ipi has a similar level of activity in brain and non-CNS lesions.

                            Outcome with stereotactic radiosurgery (SRS) and ipilimumab (ipi) for malignant melanoma brain metastases  Use of SRS with ipi appears to be safe and associated with an impressive increase in median overall survival.

                            Survival of melanoma patients with brain metastases treated with ipilimumab combined with stereotactic radiosurgery.  CONCLUSION:  Survival of patients with melanoma brain mets treated with ipi combined with SRS may be comparable to patients without brain mets

                            This is a post about a couple of studies that looked at combining radiation and ipi for brain mets in 2014:

                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

                            For more info about ipi, brain mets, SRS, or whatever…just search in the bubble at the top left of my blog is you'd like.  I hope this helps.  Wishing you my best.  Celeste

                             

                            • August 3, 2014 at 10:36 pm
                            madhatter84
                            Participant

                              Celese thank you so much for that information. It really is so inspiring to read the impressive results that are out there in fighting and beating this disease and how you've responded so well. I've read your blog and that is some serious research you've done!

                               

                              I'm always a bit worried when I go 'Google searching' for the side-effects and success rates of the various melanoma meds out there in case it will just depress me but I firmly believe that keeping that positive mental attitude and not letting it beat you (continuing work, keeping an active family life etc.) really does work. 

                               

                              I'm a week out after my first IPI infusion and so far no side effects which is good. Back to work tomorrow (albeit from home as they're easing me back in gently!) but I'm looking forward to getting back into the swing of things. I'll keep you updated with my progression (body CT and head MRI scan results due on 13th Aug) and next IPI infusion on 18th Aug but for all of you fighters whereever you may be I hope that things are as positive as they can be!

                               

                              All the best, 

                               

                              Andrew

                              • August 3, 2014 at 10:36 pm
                              madhatter84
                              Participant

                                Celese thank you so much for that information. It really is so inspiring to read the impressive results that are out there in fighting and beating this disease and how you've responded so well. I've read your blog and that is some serious research you've done!

                                 

                                I'm always a bit worried when I go 'Google searching' for the side-effects and success rates of the various melanoma meds out there in case it will just depress me but I firmly believe that keeping that positive mental attitude and not letting it beat you (continuing work, keeping an active family life etc.) really does work. 

                                 

                                I'm a week out after my first IPI infusion and so far no side effects which is good. Back to work tomorrow (albeit from home as they're easing me back in gently!) but I'm looking forward to getting back into the swing of things. I'll keep you updated with my progression (body CT and head MRI scan results due on 13th Aug) and next IPI infusion on 18th Aug but for all of you fighters whereever you may be I hope that things are as positive as they can be!

                                 

                                All the best, 

                                 

                                Andrew

                                • August 3, 2014 at 10:36 pm
                                madhatter84
                                Participant

                                  Celese thank you so much for that information. It really is so inspiring to read the impressive results that are out there in fighting and beating this disease and how you've responded so well. I've read your blog and that is some serious research you've done!

                                   

                                  I'm always a bit worried when I go 'Google searching' for the side-effects and success rates of the various melanoma meds out there in case it will just depress me but I firmly believe that keeping that positive mental attitude and not letting it beat you (continuing work, keeping an active family life etc.) really does work. 

                                   

                                  I'm a week out after my first IPI infusion and so far no side effects which is good. Back to work tomorrow (albeit from home as they're easing me back in gently!) but I'm looking forward to getting back into the swing of things. I'll keep you updated with my progression (body CT and head MRI scan results due on 13th Aug) and next IPI infusion on 18th Aug but for all of you fighters whereever you may be I hope that things are as positive as they can be!

                                   

                                  All the best, 

                                   

                                  Andrew

                                  • August 3, 2014 at 1:33 pm
                                  Bubbles
                                  Participant

                                    Well put, Artie!!! Sorry, for what you are going through, Andrew, however here are some quotes from studies that, especially if you are able to attain SRS to your brain mets, may be pertinent to your situation:

                                    From ASCO 2013:

                                    Phase II trial of ipi monotherapy in melanoma patients with brain metastases.  CONCLUSION:  Ipi has a similar level of activity in brain and non-CNS lesions.

                                    Outcome with stereotactic radiosurgery (SRS) and ipilimumab (ipi) for malignant melanoma brain metastases  Use of SRS with ipi appears to be safe and associated with an impressive increase in median overall survival.

                                    Survival of melanoma patients with brain metastases treated with ipilimumab combined with stereotactic radiosurgery.  CONCLUSION:  Survival of patients with melanoma brain mets treated with ipi combined with SRS may be comparable to patients without brain mets

                                    This is a post about a couple of studies that looked at combining radiation and ipi for brain mets in 2014:

                                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

                                    For more info about ipi, brain mets, SRS, or whatever…just search in the bubble at the top left of my blog is you'd like.  I hope this helps.  Wishing you my best.  Celeste

                                     

                                    • August 3, 2014 at 1:33 pm
                                    Bubbles
                                    Participant

                                      Well put, Artie!!! Sorry, for what you are going through, Andrew, however here are some quotes from studies that, especially if you are able to attain SRS to your brain mets, may be pertinent to your situation:

                                      From ASCO 2013:

                                      Phase II trial of ipi monotherapy in melanoma patients with brain metastases.  CONCLUSION:  Ipi has a similar level of activity in brain and non-CNS lesions.

                                      Outcome with stereotactic radiosurgery (SRS) and ipilimumab (ipi) for malignant melanoma brain metastases  Use of SRS with ipi appears to be safe and associated with an impressive increase in median overall survival.

                                      Survival of melanoma patients with brain metastases treated with ipilimumab combined with stereotactic radiosurgery.  CONCLUSION:  Survival of patients with melanoma brain mets treated with ipi combined with SRS may be comparable to patients without brain mets

                                      This is a post about a couple of studies that looked at combining radiation and ipi for brain mets in 2014:

                                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

                                      For more info about ipi, brain mets, SRS, or whatever…just search in the bubble at the top left of my blog is you'd like.  I hope this helps.  Wishing you my best.  Celeste

                                       

                                    • August 1, 2014 at 3:31 pm
                                    arthurjedi007
                                    Participant

                                      Yes. Yervoy, PD1 and all immunotherapy medicines can work for the brain as well as every area in the body. The reason is the medicine attaches to your white blood cells. In the case of Yervoy it modifies that cell for CTLA-4. PD1 for the pd1. Now it is an actived T-Cell that hunts for cancer everywhere.

                                      I've also done the zelboraf and tafinlar/mekenist combo. the zel and taf are gene targeted therapies where the medicine looks for a cell with the braf mutation and basically makes it a normal cell again which then goes away normally. However I do not know if they affect the brain. I dunno how mekenist works but it inhibits the growth of cells somehow.

                                      But YES YES YES Yervoy and PD1 can heal the brain because they work on your white blood cells that then go to the brain and everywhere.

                                      Celeste has lots more detail about it in her blog: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

                                       

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