Sorry, it’s not the update I was hoping to give.
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Sorry, it’s not the update I was hoping to give.

› Forums › General Melanoma Community › Sorry, it’s not the update I was hoping to give.

  • Post
    • July 23, 2012 at 7:20 pm
    himynameiskevin
    Participant

    Well this morning marks two years since being/knowing I was stage IV. A long journey it's been, and this mornings brain MRI has me feeling a little like I did two years ago. The images show some new tumors, there were a few tiny areas that were left untreated when I started Zelboraf. So maybe those, maybe a couple more? Radiation oncologist is going to get all the details out of the scans to have all the info possible come Wednesday morning, when I see her again, to discuss the options and treatment. I'm guessing more SRS or trying WBR for the first time, I don't know.

    Well this morning marks two years since being/knowing I was stage IV. A long journey it's been, and this mornings brain MRI has me feeling a little like I did two years ago. The images show some new tumors, there were a few tiny areas that were left untreated when I started Zelboraf. So maybe those, maybe a couple more? Radiation oncologist is going to get all the details out of the scans to have all the info possible come Wednesday morning, when I see her again, to discuss the options and treatment. I'm guessing more SRS or trying WBR for the first time, I don't know. She said they were small though, none over a cm. And told me not to lose sleep over it. I won't, I'm experencing a sense of calm, not sure what to make of that.

    Anyway, I should have PETCT soon, not sure the protocol from here, if they're just going to take me off Zelboraf or if there are any options left. I may be out of the loop, I know most trials won't accept someone with brain mets. Despite the status of my head, I feel close to normal, no noticible strange neurological symptoms. If anyone knows something new I'm unaware of, I'd like to know. I've done IL-2, Adoptive Cell Therapy with young TIL and IL-2, a few rounds of SRS, Yervoy, and Zelboraf. Thanks in advance.

    Warmly, -Kevin

Viewing 23 reply threads
  • Replies
      • July 23, 2012 at 10:24 pm
      triciad
      Participant

      Kevin,

      I'm sorry to hear about this temporary setback…key word…temporary.  You have a great attitude and a fighting spirit, so don't stop now!  Hopefully, the brain mets are the old ones and will be zapped very soon.  Lynn L. on this board is always talking about her Anti-PD1 trial that she is on at Moffitt in Tampa, FL.  I don't know if they are still recruiting, but hopefully, she will respond to you.  It sounds like a great trial.  Please don't lose hope.  We are all praying for you!!!

      Tricia

      • July 23, 2012 at 10:24 pm
      triciad
      Participant

      Kevin,

      I'm sorry to hear about this temporary setback…key word…temporary.  You have a great attitude and a fighting spirit, so don't stop now!  Hopefully, the brain mets are the old ones and will be zapped very soon.  Lynn L. on this board is always talking about her Anti-PD1 trial that she is on at Moffitt in Tampa, FL.  I don't know if they are still recruiting, but hopefully, she will respond to you.  It sounds like a great trial.  Please don't lose hope.  We are all praying for you!!!

      Tricia

      • July 23, 2012 at 10:24 pm
      triciad
      Participant

      Kevin,

      I'm sorry to hear about this temporary setback…key word…temporary.  You have a great attitude and a fighting spirit, so don't stop now!  Hopefully, the brain mets are the old ones and will be zapped very soon.  Lynn L. on this board is always talking about her Anti-PD1 trial that she is on at Moffitt in Tampa, FL.  I don't know if they are still recruiting, but hopefully, she will respond to you.  It sounds like a great trial.  Please don't lose hope.  We are all praying for you!!!

      Tricia

      • July 23, 2012 at 11:08 pm
      hope4cure1
      Participant

      Kevin, I'm sorry the scan results weren't what you hoped.  It sounds like your doctor is optimistic and looking forward to a good treatment plan.  We are all pulling for you!

      Hope

      • July 23, 2012 at 11:08 pm
      hope4cure1
      Participant

      Kevin, I'm sorry the scan results weren't what you hoped.  It sounds like your doctor is optimistic and looking forward to a good treatment plan.  We are all pulling for you!

      Hope

        • July 23, 2012 at 11:42 pm
        killmel
        Participant

        Kevin,

        My heart goes out to you. Having brain issues is not easy so you are entitled to feel concerned.

        I am praying that these brain mets are old mets & no news ones!!! I think that I read somewhere that if patients get new brain  mets while on a trial, the trial sponsor may kick off patients

        Are you still being treated by Dr. Danies at UCSD??? If so, he is the best doctor available so you are in good hands.

        When will you have PET/CT??? I am praying that you continue to show shrinkage to your mets.

        God Bless You,

        MaryBeth

        • July 23, 2012 at 11:42 pm
        killmel
        Participant

        Kevin,

        My heart goes out to you. Having brain issues is not easy so you are entitled to feel concerned.

        I am praying that these brain mets are old mets & no news ones!!! I think that I read somewhere that if patients get new brain  mets while on a trial, the trial sponsor may kick off patients

        Are you still being treated by Dr. Danies at UCSD??? If so, he is the best doctor available so you are in good hands.

        When will you have PET/CT??? I am praying that you continue to show shrinkage to your mets.

        God Bless You,

        MaryBeth

        • July 23, 2012 at 11:42 pm
        killmel
        Participant

        Kevin,

        My heart goes out to you. Having brain issues is not easy so you are entitled to feel concerned.

        I am praying that these brain mets are old mets & no news ones!!! I think that I read somewhere that if patients get new brain  mets while on a trial, the trial sponsor may kick off patients

        Are you still being treated by Dr. Danies at UCSD??? If so, he is the best doctor available so you are in good hands.

        When will you have PET/CT??? I am praying that you continue to show shrinkage to your mets.

        God Bless You,

        MaryBeth

      • July 23, 2012 at 11:08 pm
      hope4cure1
      Participant

      Kevin, I'm sorry the scan results weren't what you hoped.  It sounds like your doctor is optimistic and looking forward to a good treatment plan.  We are all pulling for you!

      Hope

      • July 23, 2012 at 11:53 pm
      aldakota22
      Participant

      Kevin stay calm.Too many people praying and pulling for you.Keep us posted.Beat the Beast.  Al

      • July 23, 2012 at 11:53 pm
      aldakota22
      Participant

      Kevin stay calm.Too many people praying and pulling for you.Keep us posted.Beat the Beast.  Al

      • July 23, 2012 at 11:53 pm
      aldakota22
      Participant

      Kevin stay calm.Too many people praying and pulling for you.Keep us posted.Beat the Beast.  Al

      • July 24, 2012 at 12:15 am
      s Mom
      Participant

      I bet they'll zap those tiny tumors and you'll be back on Zel in no time.  Praying for you Kevin…Keep fighting the beast.  God Bless and keep us updated.

      Bridgette (Jeff's Mom)

      • July 24, 2012 at 12:15 am
      s Mom
      Participant

      I bet they'll zap those tiny tumors and you'll be back on Zel in no time.  Praying for you Kevin…Keep fighting the beast.  God Bless and keep us updated.

      Bridgette (Jeff's Mom)

        • July 24, 2012 at 12:23 am
        bikerwife
        Participant
        Kevin we are sitting in the same boat you are in. Lynn has been on z for four weeks. We are not on a clinical trial that I know of they never told us that we were. Anyway we have 2 small new brain mets the size of pin heads. like you they don’t know if they are new are some that were to little to show up first time. Lynn will be having gamma knife on aug 13 for them. Our dr also didn’t seem to upset. They told us not to worry they got them before and will get them again. I know it hard not to worry like you I kinda have a peace. About it to. Good luck and God bless we will fight together.
        • July 24, 2012 at 12:23 am
        bikerwife
        Participant
        Kevin we are sitting in the same boat you are in. Lynn has been on z for four weeks. We are not on a clinical trial that I know of they never told us that we were. Anyway we have 2 small new brain mets the size of pin heads. like you they don’t know if they are new are some that were to little to show up first time. Lynn will be having gamma knife on aug 13 for them. Our dr also didn’t seem to upset. They told us not to worry they got them before and will get them again. I know it hard not to worry like you I kinda have a peace. About it to. Good luck and God bless we will fight together.
        • July 24, 2012 at 12:23 am
        bikerwife
        Participant
        Kevin we are sitting in the same boat you are in. Lynn has been on z for four weeks. We are not on a clinical trial that I know of they never told us that we were. Anyway we have 2 small new brain mets the size of pin heads. like you they don’t know if they are new are some that were to little to show up first time. Lynn will be having gamma knife on aug 13 for them. Our dr also didn’t seem to upset. They told us not to worry they got them before and will get them again. I know it hard not to worry like you I kinda have a peace. About it to. Good luck and God bless we will fight together.
      • July 24, 2012 at 12:15 am
      s Mom
      Participant

      I bet they'll zap those tiny tumors and you'll be back on Zel in no time.  Praying for you Kevin…Keep fighting the beast.  God Bless and keep us updated.

      Bridgette (Jeff's Mom)

      • July 24, 2012 at 2:00 am
      gabsound
      Participant
      Kevin,
      I think the good news is they are very small and can be “zapped” again. Let’s hope the Z is working on any other disease you may have.
      Your “calmness” comes thru in your posts. I think we can all feel your energy.

      You are an inspiration to many on this board and we are all rooting for you. Hang in there, and keep us posted.

      It seems I’ve read somewhere you can only do whole brain radiation once. Maybe someone else can chime in.

      Julie in Las Vegas

      • July 24, 2012 at 2:00 am
      gabsound
      Participant
      Kevin,
      I think the good news is they are very small and can be “zapped” again. Let’s hope the Z is working on any other disease you may have.
      Your “calmness” comes thru in your posts. I think we can all feel your energy.

      You are an inspiration to many on this board and we are all rooting for you. Hang in there, and keep us posted.

      It seems I’ve read somewhere you can only do whole brain radiation once. Maybe someone else can chime in.

      Julie in Las Vegas

      • July 24, 2012 at 2:00 am
      gabsound
      Participant
      Kevin,
      I think the good news is they are very small and can be “zapped” again. Let’s hope the Z is working on any other disease you may have.
      Your “calmness” comes thru in your posts. I think we can all feel your energy.

      You are an inspiration to many on this board and we are all rooting for you. Hang in there, and keep us posted.

      It seems I’ve read somewhere you can only do whole brain radiation once. Maybe someone else can chime in.

      Julie in Las Vegas

      • July 24, 2012 at 2:44 am
      King
      Participant

      Kevin,

       

      Thanks for giving us an update.  You have been in one long, continuous battle.  Hang onto hope…stay calm and positive.

      Your MPIP family is here for you.  One day at a time.

       

      Stay Strong
      King

      Stage IV  7/05  Liver mets

      • July 24, 2012 at 2:44 am
      King
      Participant

      Kevin,

       

      Thanks for giving us an update.  You have been in one long, continuous battle.  Hang onto hope…stay calm and positive.

      Your MPIP family is here for you.  One day at a time.

       

      Stay Strong
      King

      Stage IV  7/05  Liver mets

      • July 24, 2012 at 2:44 am
      King
      Participant

      Kevin,

       

      Thanks for giving us an update.  You have been in one long, continuous battle.  Hang onto hope…stay calm and positive.

      Your MPIP family is here for you.  One day at a time.

       

      Stay Strong
      King

      Stage IV  7/05  Liver mets

      • July 24, 2012 at 2:29 pm
      susanr
      Participant

      Kevin,

      You are young……..Keep strong and fight !!!!!!!   I know it stinks hearing that news about the brain…but your doctor seems to not be worried which means they can deal with this issue.  Keep us posted.

       

      Susan NY

      • July 24, 2012 at 2:29 pm
      susanr
      Participant

      Kevin,

      You are young……..Keep strong and fight !!!!!!!   I know it stinks hearing that news about the brain…but your doctor seems to not be worried which means they can deal with this issue.  Keep us posted.

       

      Susan NY

      • July 24, 2012 at 2:29 pm
      susanr
      Participant

      Kevin,

      You are young……..Keep strong and fight !!!!!!!   I know it stinks hearing that news about the brain…but your doctor seems to not be worried which means they can deal with this issue.  Keep us posted.

       

      Susan NY

        • July 24, 2012 at 3:52 pm
        Erinmay22
        Participant

        Hey Kevin –

        Thoughts and prayers your way!  Hang in there!  Can they do a Zelboraf/Ipi combo?  I know they are starting to trial those to help with brain mets?  Hate this disease…  

        • July 24, 2012 at 3:52 pm
        Erinmay22
        Participant

        Hey Kevin –

        Thoughts and prayers your way!  Hang in there!  Can they do a Zelboraf/Ipi combo?  I know they are starting to trial those to help with brain mets?  Hate this disease…  

        • July 24, 2012 at 3:52 pm
        Erinmay22
        Participant

        Hey Kevin –

        Thoughts and prayers your way!  Hang in there!  Can they do a Zelboraf/Ipi combo?  I know they are starting to trial those to help with brain mets?  Hate this disease…  

      • July 24, 2012 at 5:07 pm
      BethA in VA
      Participant

      Keep on living!  Don't give MM ALL of your time.  Enjoy every moment of every day.  I wish this wasn't happening to you, and will pray for a good outcome.  Sending good wishes.  Beth 3/B

      • July 24, 2012 at 5:07 pm
      BethA in VA
      Participant

      Keep on living!  Don't give MM ALL of your time.  Enjoy every moment of every day.  I wish this wasn't happening to you, and will pray for a good outcome.  Sending good wishes.  Beth 3/B

      • July 24, 2012 at 5:07 pm
      BethA in VA
      Participant

      Keep on living!  Don't give MM ALL of your time.  Enjoy every moment of every day.  I wish this wasn't happening to you, and will pray for a good outcome.  Sending good wishes.  Beth 3/B

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