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.

Quick SRS/brain/zelboraf update.

Forums General Melanoma Community Quick SRS/brain/zelboraf update.

  • Post
    himynameiskevin
    Participant

      Well the good news is, I saw my radiation oncologist and she informed me that there is nothing new showing in my brain besides the ones that were treated and the three that are going to be, I had another mask fitted while I was in and will be having one (hopefully last) session of SRS on Monday morning to finish these things off.

      Well the good news is, I saw my radiation oncologist and she informed me that there is nothing new showing in my brain besides the ones that were treated and the three that are going to be, I had another mask fitted while I was in and will be having one (hopefully last) session of SRS on Monday morning to finish these things off. She told me that there is still swelling around some of the lesions, and that this is natural for the first few weeks after radiation, so unfortunately it's recommended that I stay on the steroid and anti-seizure meds for the time being, but taper off as soon as possible down the line.

      I also saw my regular oncologist and he has officially put in the order for me to start Zelboraf, unfortunately with the time it takes to process the order, get authorization and handle other medical variables I don't understand but know are necessary, I won't be able to start it until 3/20. Three  weeks. :/ Oh this waiting is always the hardest part… But a plan is in order and maybe as the SRS does its thing, some preemptive thoughts of a possible hopeful outcome in the future will trigger genuine optimism and make this time pass quickly. A day at a time. That's my goal.. a day, a week, a month at a time… and then maybe one day I'll be 90 with quite a story to tell.

      Thank you all for the ongoing encouragement and support.
      -Kevin
       

    Viewing 29 reply threads
    • Replies
        lhaley
        Participant

          Kevin,

          I'm glad to see that they are already getting you ready for the next blast of radiation.  I know you don't want to wait the 3 weeks for the Zelboraf but it will give your brain time to rest.  

          While I have hated the steroids after 5 months I am finally weaned. Friday is actually the last day. I sure hope you don't have to have the steroids near this long, you do want to get rid of the swelling.  Once my swelling seemed to just stay there they performed a crainectomy instead 3 weeks ago and now all swelling is gone!

          Good luck on Monday!

          Linda

          lhaley
          Participant

            Kevin,

            I'm glad to see that they are already getting you ready for the next blast of radiation.  I know you don't want to wait the 3 weeks for the Zelboraf but it will give your brain time to rest.  

            While I have hated the steroids after 5 months I am finally weaned. Friday is actually the last day. I sure hope you don't have to have the steroids near this long, you do want to get rid of the swelling.  Once my swelling seemed to just stay there they performed a crainectomy instead 3 weeks ago and now all swelling is gone!

            Good luck on Monday!

            Linda

            lhaley
            Participant

              Kevin,

              I'm glad to see that they are already getting you ready for the next blast of radiation.  I know you don't want to wait the 3 weeks for the Zelboraf but it will give your brain time to rest.  

              While I have hated the steroids after 5 months I am finally weaned. Friday is actually the last day. I sure hope you don't have to have the steroids near this long, you do want to get rid of the swelling.  Once my swelling seemed to just stay there they performed a crainectomy instead 3 weeks ago and now all swelling is gone!

              Good luck on Monday!

              Linda

              aldakota22
              Participant

                Happy you got positive news.The waiting is hard but once on the drug will see it working really, really fast My prayers out to you.Yoa are an inspiration to so many of us on this site.    Al

                aldakota22
                Participant

                  Happy you got positive news.The waiting is hard but once on the drug will see it working really, really fast My prayers out to you.Yoa are an inspiration to so many of us on this site.    Al

                  aldakota22
                  Participant

                    Happy you got positive news.The waiting is hard but once on the drug will see it working really, really fast My prayers out to you.Yoa are an inspiration to so many of us on this site.    Al

                    hope4cure1
                    Participant

                      Kevin, I hope you know that everyone on here is rooting for you!  I hope you have fantastic results with Zelboraf.  You deserve a break!

                      Hope

                      hope4cure1
                      Participant

                        Kevin, I hope you know that everyone on here is rooting for you!  I hope you have fantastic results with Zelboraf.  You deserve a break!

                        Hope

                        hope4cure1
                        Participant

                          Kevin, I hope you know that everyone on here is rooting for you!  I hope you have fantastic results with Zelboraf.  You deserve a break!

                          Hope

                          scots
                          Participant
                            Waiting is the worst. Keep the positive attitude and we are praying for you.

                            Scot

                            scots
                            Participant
                              Waiting is the worst. Keep the positive attitude and we are praying for you.

                              Scot

                              scots
                              Participant
                                Waiting is the worst. Keep the positive attitude and we are praying for you.

                                Scot

                                Fen
                                Participant

                                  Three weeks may not be a lot in the whole scheme of things, but waiting is a bear!  Praying like hell for you. fen

                                  Fen
                                  Participant

                                    Three weeks may not be a lot in the whole scheme of things, but waiting is a bear!  Praying like hell for you. fen

                                    Fen
                                    Participant

                                      Three weeks may not be a lot in the whole scheme of things, but waiting is a bear!  Praying like hell for you. fen

                                      JerryfromFauq
                                      Participant

                                        Sounds favorable.  Keep on keep'n on!  Pulling for you.

                                        JerryfromFauq
                                        Participant

                                          Sounds favorable.  Keep on keep'n on!  Pulling for you.

                                          JerryfromFauq
                                          Participant

                                            Sounds favorable.  Keep on keep'n on!  Pulling for you.

                                            gabsound
                                            Participant

                                              Kevin,

                                              What a warrior you are. I hope you will get a durable result with the SRS and that the Zelboraf kicks right in and fights off anything else that you may have. I know what you mean about the insurance. It's so frustrating waiting. Maybe they think if they delay long enough we won't need the treatment anymore?

                                              Wishing you success,

                                              Julie in Las Vegas

                                              gabsound
                                              Participant

                                                Kevin,

                                                What a warrior you are. I hope you will get a durable result with the SRS and that the Zelboraf kicks right in and fights off anything else that you may have. I know what you mean about the insurance. It's so frustrating waiting. Maybe they think if they delay long enough we won't need the treatment anymore?

                                                Wishing you success,

                                                Julie in Las Vegas

                                                gabsound
                                                Participant

                                                  Kevin,

                                                  What a warrior you are. I hope you will get a durable result with the SRS and that the Zelboraf kicks right in and fights off anything else that you may have. I know what you mean about the insurance. It's so frustrating waiting. Maybe they think if they delay long enough we won't need the treatment anymore?

                                                  Wishing you success,

                                                  Julie in Las Vegas

                                                  MaryD
                                                  Participant

                                                    Kevin – you never cease to amaze me with your tenacity, optimism, and courage. The waiting is always tough but you're on the home stretch of the SRS and I'll bepraying that the Zelboraf will yield great results!

                                                    Best regards,

                                                    Mary

                                                    MaryD
                                                    Participant

                                                      Kevin – you never cease to amaze me with your tenacity, optimism, and courage. The waiting is always tough but you're on the home stretch of the SRS and I'll bepraying that the Zelboraf will yield great results!

                                                      Best regards,

                                                      Mary

                                                      MaryD
                                                      Participant

                                                        Kevin – you never cease to amaze me with your tenacity, optimism, and courage. The waiting is always tough but you're on the home stretch of the SRS and I'll bepraying that the Zelboraf will yield great results!

                                                        Best regards,

                                                        Mary

                                                        davidfromsingapore
                                                        Participant

                                                          Keep your spirits up Kevin.  There are more treatment options around the corner.  At some point, check out adoptive cell therapy.  They're doing it MD Anderson and it seems quite promising.  I'm in your situation.  Brain mets and taking Zelboraf.  Brain mets keep coming, but body clear.  Zelboraf isn't the worst thing, but not totally easy either.  I am quite sleepy every day.  Good luck to you.  Even though I don't know you, I'll be thinking about you. 

                                                          David

                                                          davidfromsingapore
                                                          Participant

                                                            Keep your spirits up Kevin.  There are more treatment options around the corner.  At some point, check out adoptive cell therapy.  They're doing it MD Anderson and it seems quite promising.  I'm in your situation.  Brain mets and taking Zelboraf.  Brain mets keep coming, but body clear.  Zelboraf isn't the worst thing, but not totally easy either.  I am quite sleepy every day.  Good luck to you.  Even though I don't know you, I'll be thinking about you. 

                                                            David

                                                            davidfromsingapore
                                                            Participant

                                                              Keep your spirits up Kevin.  There are more treatment options around the corner.  At some point, check out adoptive cell therapy.  They're doing it MD Anderson and it seems quite promising.  I'm in your situation.  Brain mets and taking Zelboraf.  Brain mets keep coming, but body clear.  Zelboraf isn't the worst thing, but not totally easy either.  I am quite sleepy every day.  Good luck to you.  Even though I don't know you, I'll be thinking about you. 

                                                              David

                                                                Retired41505
                                                                Participant

                                                                  David, how are you doing? My son in law, like you has brain mets only. Nine good weeks on Z but was told today his liver functions are off. CT tomorrow and stopping Z for a few days which is a bit scary as it's been working and tumors are shrinking. Until now things have been good.

                                                                  Nina

                                                                  Retired41505
                                                                  Participant

                                                                    David, how are you doing? My son in law, like you has brain mets only. Nine good weeks on Z but was told today his liver functions are off. CT tomorrow and stopping Z for a few days which is a bit scary as it's been working and tumors are shrinking. Until now things have been good.

                                                                    Nina

                                                                    Retired41505
                                                                    Participant

                                                                      David, how are you doing? My son in law, like you has brain mets only. Nine good weeks on Z but was told today his liver functions are off. CT tomorrow and stopping Z for a few days which is a bit scary as it's been working and tumors are shrinking. Until now things have been good.

                                                                      Nina

                                                                      Retired41505
                                                                      Participant

                                                                        David, how are you doing? My son in law, like you has brain mets only. Nine good weeks on Z but was told today his liver functions are off. CT tomorrow and stopping Z for a few days which is a bit scary as it's been working and tumors are shrinking. Until now things have been good.

                                                                        Nina

                                                                        Retired41505
                                                                        Participant

                                                                          David, how are you doing? My son in law, like you has brain mets only. Nine good weeks on Z but was told today his liver functions are off. CT tomorrow and stopping Z for a few days which is a bit scary as it's been working and tumors are shrinking. Until now things have been good.

                                                                          Nina

                                                                          Retired41505
                                                                          Participant

                                                                            David, how are you doing? My son in law, like you has brain mets only. Nine good weeks on Z but was told today his liver functions are off. CT tomorrow and stopping Z for a few days which is a bit scary as it's been working and tumors are shrinking. Until now things have been good.

                                                                            Nina

                                                                          Richard_K
                                                                          Participant

                                                                            Kevin

                                                                            Glad to hear the positive news.  I hope the next 2 1/2 weeks pass quickly for you.

                                                                            Dick

                                                                             

                                                                            Richard_K
                                                                            Participant

                                                                              Kevin

                                                                              Glad to hear the positive news.  I hope the next 2 1/2 weeks pass quickly for you.

                                                                              Dick

                                                                               

                                                                                deardad
                                                                                Participant

                                                                                  All the best Kevin, sounds like a good plan.

                                                                                  Nahmi

                                                                                  deardad
                                                                                  Participant

                                                                                    All the best Kevin, sounds like a good plan.

                                                                                    Nahmi

                                                                                    deardad
                                                                                    Participant

                                                                                      All the best Kevin, sounds like a good plan.

                                                                                      Nahmi

                                                                                    Richard_K
                                                                                    Participant

                                                                                      Kevin

                                                                                      Glad to hear the positive news.  I hope the next 2 1/2 weeks pass quickly for you.

                                                                                      Dick

                                                                                       

                                                                                  Viewing 29 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.

                                                                                  Popular Topics