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Can someone please reply?

Forums General Melanoma Community Can someone please reply?

  • Post
    adgesoph
    Participant

     

     

    Hi, I've posted here just a couple of times for my dad.  He has stage IV mel. – lung mets, and a couple tumors in his head and neck area.  This past week he has been at Vanderbilt getting ready to start the GSK Braf/Mek combo trial and passed all the screenings until they did a cat scan of his brain and found 2 small brain mets.  So now he's not eligible for this trial-talk about a major let down-we were all so excited he was going to start this medicine.  But Vandy does have the GSK Braf trial for brain mets and they are now trying to get him into this.  Is this the way to go or should he do gamma knife??  The brain mets have thrown a huge curve ball in everything because I thought I was up on my melanoma research but haven't looked into what's best for brain mets.  

    My parents are still at Vandy waiting to here if my dad can get into this new trial (they live 12 hours away).  He's had radiation before for tumors in his head/neck area and it didn't work and he lost all of his hair in that area and still has big issues with dry mouth and not tasting things well.  So radiation isn't something my parents want to do again because it was a bunch of pain and trouble for nothing.  Is Gamma knife the same??  Any thoughts on this braf trial for brain mets?  I know it's new and has had some success but with only a small number of patients.  Also, anyone else have experience at Vandy?  So far my parents love it (doctors, staff just impressed in general), just wish they could start a trial.  

    Thanks for any input you can give me.  I feel we really need to so something fast with this small brain mets!

     

    Adrienne

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  • Replies
      Carmon in NM
      Participant

      Hi – I've had gamma knife for brain mets and while it is gamma radiation beams, it is pin point targeted on the tumor after careful computer mapping is done with a high resolution MRI. The beams only hit the target within the brain.

      I had no trouble with dry mouth, bad taste or anything else. The symptoms from the brain tumor did increase for a short time due to temporary swelling and having the halo screwed into my skull wasn't much fun but really it wasn't a difficult procedure at all and the recovery time was really easy.

      I wish I could answer your other questions but I don't have any experience in those areas. Best wishes and prayers for your entire family – Carmon in NM.

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      Carmon in NM
      Participant

      Hi – I've had gamma knife for brain mets and while it is gamma radiation beams, it is pin point targeted on the tumor after careful computer mapping is done with a high resolution MRI. The beams only hit the target within the brain.

      I had no trouble with dry mouth, bad taste or anything else. The symptoms from the brain tumor did increase for a short time due to temporary swelling and having the halo screwed into my skull wasn't much fun but really it wasn't a difficult procedure at all and the recovery time was really easy.

      I wish I could answer your other questions but I don't have any experience in those areas. Best wishes and prayers for your entire family – Carmon in NM.

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      KatyWI
      Participant

      In addition to gamma knife, there is also cyber knife. It is practically the same except that instead of needing a halo screwed to your head, you wear a mask (no screws).  I think stereotatcic radiosurgery (SRS) is the best choice for someone with a few small mets (I'd better think so, because that's the choice I made!)  I had zero side effects and went to a "girls quilting weekend" the very next day.  (I had 40 aunties and grandmas looking after me – probably the safest place I could have been!) 

      There's someone on the board right now in crisis because his wife had seizures after SRS.  Please know this is very, very rare – completely sucks that it happened to her – but still very rare.  SRS probably has the lowest risk profile of all the options for brain mets.  I suggest you track down a radiation oncologist and discuss your dad's options and risks.

      Best,

      KatyWI

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      KatyWI
      Participant

      In addition to gamma knife, there is also cyber knife. It is practically the same except that instead of needing a halo screwed to your head, you wear a mask (no screws).  I think stereotatcic radiosurgery (SRS) is the best choice for someone with a few small mets (I'd better think so, because that's the choice I made!)  I had zero side effects and went to a "girls quilting weekend" the very next day.  (I had 40 aunties and grandmas looking after me – probably the safest place I could have been!) 

      There's someone on the board right now in crisis because his wife had seizures after SRS.  Please know this is very, very rare – completely sucks that it happened to her – but still very rare.  SRS probably has the lowest risk profile of all the options for brain mets.  I suggest you track down a radiation oncologist and discuss your dad's options and risks.

      Best,

      KatyWI

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      KatyWI
      Participant

      One more thing – the BRAF trial for brain mets could be a really good option because it will go after body and brain in one fell swoop.  I was not willing to go onto BRAF for reasons I won't go into right now so I did not consider it.  If he does SRS and then looks for another trial to target the body mets, he will have a washout period before he can go onto most other trials.

      KatyWI

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        killmel
        Participant

        Hi Katy,

         

        Have you finished IPI and how are the side effects? Did IPI work for you?

        You mentioned: "I was not willing to go onto BRAF for reasons I won't go into right now so I did not consider it" .

        If you have time I would be interested in you reasoning. I am look at alternative treatment at stage 3 so I respect your opinion.

        Thanks and hoping you a NED staus.

        Sue

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        killmel
        Participant

        Hi Katy,

         

        Have you finished IPI and how are the side effects? Did IPI work for you?

        You mentioned: "I was not willing to go onto BRAF for reasons I won't go into right now so I did not consider it" .

        If you have time I would be interested in you reasoning. I am look at alternative treatment at stage 3 so I respect your opinion.

        Thanks and hoping you a NED staus.

        Sue

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      KatyWI
      Participant

      One more thing – the BRAF trial for brain mets could be a really good option because it will go after body and brain in one fell swoop.  I was not willing to go onto BRAF for reasons I won't go into right now so I did not consider it.  If he does SRS and then looks for another trial to target the body mets, he will have a washout period before he can go onto most other trials.

      KatyWI

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      NicOz
      Participant
      GSK will shortly be opening up a trial for brain mets VERY shortly if not already. Can someone please look it up for this lady & her dad pls? Am in hospital and surfing on my phone & it’s too hard to manage. Sorry.
      I hope someone will point u in the right direction shortly.
      Good luck with you and your dad in finding something that suits!

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        adgesoph
        Participant

        Thank you all for your replies.  GSK does have a trial for brain mets using their braf inhibitor at Vandy where my dad is already so this is good that he's there waiting, since he was excluded from the braf/mek trial at the last minute due to these brain mets.  But I'm just wondering if this is the best way to go right now.  Although my dad has a rather large and painful tumor on his head/neck area and they really can't operate on it because he's has extensive surgery in that area or near it before for the initial tumors that were found.  So braf may give him the best relief for this tumor the quickest.  Just reading the prognosis of brain mets is scary and I don't like sitting around waiting but hopefully he'll get into the braf trial next week.  Sorry for rambling, I feel like we're in this race right now to save him!

        I just haven't heard of anyone doing the GSK braf trial for brain mets-is this because it's so new?

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        lhaley
        Participant

        Michael posted the information for this trial. It's so new that the literature only shows Germany as recruiting. Vandy isn't even on the list so maybe it's expanding. 

        Please keep us up to date as to how your fathers doing.  I don't believe anyone on the board has done this treatment to date.

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        lhaley
        Participant

        Michael posted the information for this trial. It's so new that the literature only shows Germany as recruiting. Vandy isn't even on the list so maybe it's expanding. 

        Please keep us up to date as to how your fathers doing.  I don't believe anyone on the board has done this treatment to date.

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        adgesoph
        Participant

        Thank you all for your replies.  GSK does have a trial for brain mets using their braf inhibitor at Vandy where my dad is already so this is good that he's there waiting, since he was excluded from the braf/mek trial at the last minute due to these brain mets.  But I'm just wondering if this is the best way to go right now.  Although my dad has a rather large and painful tumor on his head/neck area and they really can't operate on it because he's has extensive surgery in that area or near it before for the initial tumors that were found.  So braf may give him the best relief for this tumor the quickest.  Just reading the prognosis of brain mets is scary and I don't like sitting around waiting but hopefully he'll get into the braf trial next week.  Sorry for rambling, I feel like we're in this race right now to save him!

        I just haven't heard of anyone doing the GSK braf trial for brain mets-is this because it's so new?

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        adgesoph
        Participant

        Thank you all for your replies.  GSK does have a trial for brain mets using their braf inhibitor at Vandy where my dad is already so this is good that he's there waiting, since he was excluded from the braf/mek trial at the last minute due to these brain mets.  But I'm just wondering if this is the best way to go right now.  Although my dad has a rather large and painful tumor on his head/neck area and they really can't operate on it because he's has extensive surgery in that area or near it before for the initial tumors that were found.  So braf may give him the best relief for this tumor the quickest.  Just reading the prognosis of brain mets is scary and I don't like sitting around waiting but hopefully he'll get into the braf trial next week.  Sorry for rambling, I feel like we're in this race right now to save him!

        I just haven't heard of anyone doing the GSK braf trial for brain mets-is this because it's so new?

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        adgesoph
        Participant

        http://oncore.mc.vanderbilt.edu/sip/SIPControlServlet

         

        here is the GSK Braf trial for brain mets at Vanderbilt

         

        Adrienne

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        adgesoph
        Participant

        http://oncore.mc.vanderbilt.edu/sip/SIPControlServlet

         

        here is the GSK Braf trial for brain mets at Vanderbilt

         

        Adrienne

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        adgesoph
        Participant

        Thank you all for your replies.  GSK does have a trial for brain mets using their braf inhibitor at Vandy where my dad is already so this is good that he's there waiting, since he was excluded from the braf/mek trial at the last minute due to these brain mets.  But I'm just wondering if this is the best way to go right now.  Although my dad has a rather large and painful tumor on his head/neck area and they really can't operate on it because he's has extensive surgery in that area or near it before for the initial tumors that were found.  So braf may give him the best relief for this tumor the quickest.  Just reading the prognosis of brain mets is scary and I don't like sitting around waiting but hopefully he'll get into the braf trial next week.  Sorry for rambling, I feel like we're in this race right now to save him!

        I just haven't heard of anyone doing the GSK braf trial for brain mets-is this because it's so new?

        Loading spinner
      NicOz
      Participant
      GSK will shortly be opening up a trial for brain mets VERY shortly if not already. Can someone please look it up for this lady & her dad pls? Am in hospital and surfing on my phone & it’s too hard to manage. Sorry.
      I hope someone will point u in the right direction shortly.
      Good luck with you and your dad in finding something that suits!

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      Linda J
      Participant
      I was in the same situation. I was supposed to start the combo braf/mek but then brain tumors happened. I did 5 rounds
      of wbr to keep any other crazy brain things popping up and then 1 round of carbo/taxel to try to keep the rest of the mets from going crazy. The wbr and chemo were given because the docs were waiting for the brain braf trial to come to Canada.
      Now I’m on the brain braf trial – a GSK study. I’m thankful because now I’m on something that will take care of everything all at once.
      If the trial had been in Canada earlier I would have started it right away. A met in my arm bone caused a fracture while I was waiting but I’m going to be doing some palliative radiation this week that does not interfere with the trial at all.
      I would hop on the braf study.
      Linda J

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      Linda J
      Participant
      I was in the same situation. I was supposed to start the combo braf/mek but then brain tumors happened. I did 5 rounds
      of wbr to keep any other crazy brain things popping up and then 1 round of carbo/taxel to try to keep the rest of the mets from going crazy. The wbr and chemo were given because the docs were waiting for the brain braf trial to come to Canada.
      Now I’m on the brain braf trial – a GSK study. I’m thankful because now I’m on something that will take care of everything all at once.
      If the trial had been in Canada earlier I would have started it right away. A met in my arm bone caused a fracture while I was waiting but I’m going to be doing some palliative radiation this week that does not interfere with the trial at all.
      I would hop on the braf study.
      Linda J

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      LynnLuc
      Participant

      I think i would personally do the trial and if it didn't work I might consider the gamma knife…but that's just me…

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      LynnLuc
      Participant

      I think i would personally do the trial and if it didn't work I might consider the gamma knife…but that's just me…

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