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.

Decision-making: ipi and whole-brain radiation

Forums General Melanoma Community Decision-making: ipi and whole-brain radiation

  • Post
    PeterO
    Participant

      It took time, prayer, research, and conversation with my medical team, but I've now settled on a plan for how to treat my stage IV disease. Here are my blog posts on how I arrived at my decision: http://www.theogler.blogpost.com.

      It took time, prayer, research, and conversation with my medical team, but I've now settled on a plan for how to treat my stage IV disease. Here are my blog posts on how I arrived at my decision: http://www.theogler.blogpost.com.

      Loading spinner
    Viewing 5 reply threads
    • Replies
        lhaley
        Participant

          I tried to hit your link and it didn't work.  Please try again.

          Linda

          Loading spinner
            PeterO
            Participant

              Sorry. That should be "blogspot"not "blogpost"

              Loading spinner
              POW
              Participant

                I very much enjoyed reading your blog. You are an excellent writer and a thorough researcher. Good for you for finding and insisting upon a modification of WBR that will minimize the chances of post-radiation cognitive impairment and memory loss! Since you say that your personal goal is to rid yourself of this cancer completely, I think your decision to do both WBR and Ipi is a smart move. Good luck to you, and keep us posted on your progress.

                Loading spinner
                POW
                Participant

                  I very much enjoyed reading your blog. You are an excellent writer and a thorough researcher. Good for you for finding and insisting upon a modification of WBR that will minimize the chances of post-radiation cognitive impairment and memory loss! Since you say that your personal goal is to rid yourself of this cancer completely, I think your decision to do both WBR and Ipi is a smart move. Good luck to you, and keep us posted on your progress.

                  Loading spinner
                  POW
                  Participant

                    I very much enjoyed reading your blog. You are an excellent writer and a thorough researcher. Good for you for finding and insisting upon a modification of WBR that will minimize the chances of post-radiation cognitive impairment and memory loss! Since you say that your personal goal is to rid yourself of this cancer completely, I think your decision to do both WBR and Ipi is a smart move. Good luck to you, and keep us posted on your progress.

                    Loading spinner
                    PeterO
                    Participant

                      Sorry. That should be "blogspot"not "blogpost"

                      Loading spinner
                      PeterO
                      Participant

                        Sorry. That should be "blogspot"not "blogpost"

                        Loading spinner
                      lhaley
                      Participant

                        I tried to hit your link and it didn't work.  Please try again.

                        Linda

                        Loading spinner
                        lhaley
                        Participant

                          I tried to hit your link and it didn't work.  Please try again.

                          Linda

                          Loading spinner
                          Amanda
                          Participant

                            I will check out your blog, but for now, as for WBR and Yervoy.  This is what my boyfriend has done so far.  Diagnosed march 9th, 2012 (stage 4, no primary) with one large met (3cm) in brain, and another two tiny spots in brain, and mets     ''all throughout lungs'', as well as a very large met of 7cm under skin on pectoral muscle, and a met on the scalp.  

                            Doctor suggested WBR (im assuming because the largest brain met was too large for gamma knife).  After about his second tor third reatment, (he was to have treatments monday-friday for three weeks i think) he got a really bad headache which his oncologist said to keep a look out for (and he NEVER gets headaches). Well, he got a really bad headache one night, went to E.R., turned out his 3cm met was swelling and bleeing quite a bit.  A craniotomy was suggested since the met was very accessible.  It was done the following day after he had went to the hospital for his headache.  Released from hospital a day after craniotomy, and felt great.  Started Yervoy maybe a week or so later. 

                            He finished his 4th Yervoy infusion maybe about 2 months ago, and actually just had a birthday on the 15th of this month.  I, as his girlfriend have noticed some short term memory loss from the WBR, but it seems to have gotten a little better over a couple months.  Things like, forgetting where you parked the car the night before.  He kept forgetting we had run out of pepper, but that i already went and bought some, so he bought some pepper forgetting that i already had done the same…As for the Yervoy, he mostly had Fatigue, some occasional stomach aches, nausea, loss of appetite, foods tasted bland and not the same, A rash that itched like crazy and red skin for maybe a week, and a few other minor side effects, but nothing major. 

                            His mets basically stopped growing once we started Yervoy.  The visible large met under the skin on his pectoral muscle has stayed the same size, no growth, no shrinkage.  And the visible met on the scalp from the WBR is almost flat on his scalp. (It used to portrude from the scalp very noticeably, now it's almost completely flat due to the Radiation).  So all in all, forgetting where the car is parked, and some minor side effects has kept my boyfriend basically stable.  It's been about 6 months since his diagnosis and he's still around, Thank the lord.  All in all i suggest you give Yervoy and WBR a try if those are your options.  Remember everyone is different and not everyone will experience memory loss from WBR, and not everyone will get those nasty side effects from Yervoy.  Like i said, my boyfriend had minimal side effects and it's keeping the mets from growing. 

                             God Bless all melanoma warriors and loved ones.

                            Loading spinner
                            Amanda
                            Participant

                              I will check out your blog, but for now, as for WBR and Yervoy.  This is what my boyfriend has done so far.  Diagnosed march 9th, 2012 (stage 4, no primary) with one large met (3cm) in brain, and another two tiny spots in brain, and mets     ''all throughout lungs'', as well as a very large met of 7cm under skin on pectoral muscle, and a met on the scalp.  

                              Doctor suggested WBR (im assuming because the largest brain met was too large for gamma knife).  After about his second tor third reatment, (he was to have treatments monday-friday for three weeks i think) he got a really bad headache which his oncologist said to keep a look out for (and he NEVER gets headaches). Well, he got a really bad headache one night, went to E.R., turned out his 3cm met was swelling and bleeing quite a bit.  A craniotomy was suggested since the met was very accessible.  It was done the following day after he had went to the hospital for his headache.  Released from hospital a day after craniotomy, and felt great.  Started Yervoy maybe a week or so later. 

                              He finished his 4th Yervoy infusion maybe about 2 months ago, and actually just had a birthday on the 15th of this month.  I, as his girlfriend have noticed some short term memory loss from the WBR, but it seems to have gotten a little better over a couple months.  Things like, forgetting where you parked the car the night before.  He kept forgetting we had run out of pepper, but that i already went and bought some, so he bought some pepper forgetting that i already had done the same…As for the Yervoy, he mostly had Fatigue, some occasional stomach aches, nausea, loss of appetite, foods tasted bland and not the same, A rash that itched like crazy and red skin for maybe a week, and a few other minor side effects, but nothing major. 

                              His mets basically stopped growing once we started Yervoy.  The visible large met under the skin on his pectoral muscle has stayed the same size, no growth, no shrinkage.  And the visible met on the scalp from the WBR is almost flat on his scalp. (It used to portrude from the scalp very noticeably, now it's almost completely flat due to the Radiation).  So all in all, forgetting where the car is parked, and some minor side effects has kept my boyfriend basically stable.  It's been about 6 months since his diagnosis and he's still around, Thank the lord.  All in all i suggest you give Yervoy and WBR a try if those are your options.  Remember everyone is different and not everyone will experience memory loss from WBR, and not everyone will get those nasty side effects from Yervoy.  Like i said, my boyfriend had minimal side effects and it's keeping the mets from growing. 

                               God Bless all melanoma warriors and loved ones.

                              Loading spinner
                              Amanda
                              Participant

                                I will check out your blog, but for now, as for WBR and Yervoy.  This is what my boyfriend has done so far.  Diagnosed march 9th, 2012 (stage 4, no primary) with one large met (3cm) in brain, and another two tiny spots in brain, and mets     ''all throughout lungs'', as well as a very large met of 7cm under skin on pectoral muscle, and a met on the scalp.  

                                Doctor suggested WBR (im assuming because the largest brain met was too large for gamma knife).  After about his second tor third reatment, (he was to have treatments monday-friday for three weeks i think) he got a really bad headache which his oncologist said to keep a look out for (and he NEVER gets headaches). Well, he got a really bad headache one night, went to E.R., turned out his 3cm met was swelling and bleeing quite a bit.  A craniotomy was suggested since the met was very accessible.  It was done the following day after he had went to the hospital for his headache.  Released from hospital a day after craniotomy, and felt great.  Started Yervoy maybe a week or so later. 

                                He finished his 4th Yervoy infusion maybe about 2 months ago, and actually just had a birthday on the 15th of this month.  I, as his girlfriend have noticed some short term memory loss from the WBR, but it seems to have gotten a little better over a couple months.  Things like, forgetting where you parked the car the night before.  He kept forgetting we had run out of pepper, but that i already went and bought some, so he bought some pepper forgetting that i already had done the same…As for the Yervoy, he mostly had Fatigue, some occasional stomach aches, nausea, loss of appetite, foods tasted bland and not the same, A rash that itched like crazy and red skin for maybe a week, and a few other minor side effects, but nothing major. 

                                His mets basically stopped growing once we started Yervoy.  The visible large met under the skin on his pectoral muscle has stayed the same size, no growth, no shrinkage.  And the visible met on the scalp from the WBR is almost flat on his scalp. (It used to portrude from the scalp very noticeably, now it's almost completely flat due to the Radiation).  So all in all, forgetting where the car is parked, and some minor side effects has kept my boyfriend basically stable.  It's been about 6 months since his diagnosis and he's still around, Thank the lord.  All in all i suggest you give Yervoy and WBR a try if those are your options.  Remember everyone is different and not everyone will experience memory loss from WBR, and not everyone will get those nasty side effects from Yervoy.  Like i said, my boyfriend had minimal side effects and it's keeping the mets from growing. 

                                 God Bless all melanoma warriors and loved ones.

                                Loading spinner
                            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.