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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

        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

      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

      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

       

      Richard_K
      Participant

      Kevin

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

      Dick

       

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