surgery on zelboraf
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surgery on zelboraf

› Forums › General Melanoma Community › surgery on zelboraf

  • Post
    • March 25, 2012 at 5:29 am
    deardad
    Participant

    Im just preparing myself for next weeks scans for my dad, I think it's now 3 mnths without scans on Zelboraf which he started OCT 2011. If there is new growth what do you think we should try next?

    Im just preparing myself for next weeks scans for my dad, I think it's now 3 mnths without scans on Zelboraf which he started OCT 2011. If there is new growth what do you think we should try next?

    I know it really depends on where you live (for trials) and we are in Melbourne Australia. I'm wondering if anyone has been on Zelboraf and had surgery at the same time? The late Jim Stynes RIP had 24 surgeries including 6 in his brain, he was only 45 and AFL footballer, do you think his treatment was more aggressive because he's young and fit or due to his high profile. My father shares the same oncologist and I suppose Im just really stressing out for him. Has anyone had SRS on their liver?

    I just want them to go in and remove the tumors that can be removed and SRS the liver where there are four small lesions.

    What are your thoughts.

    Thanks advance 

    Nahmi (daughter of patient)

Viewing 11 reply threads
  • Replies
      • March 25, 2012 at 5:34 am
      deardad
      Participant

      I don't know why it posted as anonymous its deardad profile here.

      • March 25, 2012 at 5:34 am
      deardad
      Participant

      I don't know why it posted as anonymous its deardad profile here.

      • March 25, 2012 at 5:34 am
      deardad
      Participant

      I don't know why it posted as anonymous its deardad profile here.

      • March 25, 2012 at 1:11 pm
      aldakota22
      Participant

        I am  on Zelboraf myself and thank God it is a miracle drug for most on it.From what I understand this drug affects blood clotting.Your dad may have to stop treatment or have dose reduced.My prayers for  both of you.All the best on surgery.   Al

        • March 25, 2012 at 10:25 pm
        deardad
        Participant

        Thanks I didn't know that take care.

        • March 25, 2012 at 10:25 pm
        deardad
        Participant

        Thanks I didn't know that take care.

        • March 25, 2012 at 10:25 pm
        deardad
        Participant

        Thanks I didn't know that take care.

      • March 25, 2012 at 1:11 pm
      aldakota22
      Participant

        I am  on Zelboraf myself and thank God it is a miracle drug for most on it.From what I understand this drug affects blood clotting.Your dad may have to stop treatment or have dose reduced.My prayers for  both of you.All the best on surgery.   Al

      • March 25, 2012 at 1:11 pm
      aldakota22
      Participant

        I am  on Zelboraf myself and thank God it is a miracle drug for most on it.From what I understand this drug affects blood clotting.Your dad may have to stop treatment or have dose reduced.My prayers for  both of you.All the best on surgery.   Al

      • March 25, 2012 at 2:28 pm
      AlisonC
      Participant
      Hi Nahmi

      No info on surgery after zelboraf I’m afraid although I would say don’t give up hope that it will all still be NED. I don’t think many Americans will have heard of Jim Stynes so to comment on that question, I think that for patients like him, they have an extensive network of fairly high profile friends so they tend to get intros to several different doctors who might offer more options.

      Honestly though, I don’t think it’s that as much as I think it’s being able to successfully lobby for the treatment you want and being higher profile gave him some power to do that. NicOz, who posted here for quite a while, was a clinical trials nurse herself (in Sydney) so when she had brain mets, she was able to argue and argue for SRS/Gamma knife for a long time ( 21 tumours treated that way I think, over 2 years) whereas I think most doctors would default to WBR with that many tumours.

      I think he was pretty determined (to be where he was in life) and that was what gave him the force to argue for what he wanted…

      Good luck for your Dad’s scans

      AlisonC
      Stage IIIB
      NED since 2001

        • March 25, 2012 at 10:20 pm
        deardad
        Participant

        Thanks Alison I think you're right, it does come down to your determination and Jim Stynes definately had that. I suppose for the first time I really realise that this isn't my fight and I can't force my dad to fight when maybe he doesn't have that determination. He wants to beat this but he doesn't want to know about treatments really, only when things are desperate I suppose, its his way of coping with the stress of all this (my mums the same). My sister and myself go the appointments for scan results because mum can't cope, she nearly passes out waiting for them to be read. It's harder on dad and us her being there.

        I fondly remember NicOz, she was one tough cookie. Im sad shes gone.

        Thanks again, and all the best to you Alison…hoping you are cured!

        Nahmi from Melbourne

        • March 25, 2012 at 10:20 pm
        deardad
        Participant

        Thanks Alison I think you're right, it does come down to your determination and Jim Stynes definately had that. I suppose for the first time I really realise that this isn't my fight and I can't force my dad to fight when maybe he doesn't have that determination. He wants to beat this but he doesn't want to know about treatments really, only when things are desperate I suppose, its his way of coping with the stress of all this (my mums the same). My sister and myself go the appointments for scan results because mum can't cope, she nearly passes out waiting for them to be read. It's harder on dad and us her being there.

        I fondly remember NicOz, she was one tough cookie. Im sad shes gone.

        Thanks again, and all the best to you Alison…hoping you are cured!

        Nahmi from Melbourne

        • March 25, 2012 at 10:20 pm
        deardad
        Participant

        Thanks Alison I think you're right, it does come down to your determination and Jim Stynes definately had that. I suppose for the first time I really realise that this isn't my fight and I can't force my dad to fight when maybe he doesn't have that determination. He wants to beat this but he doesn't want to know about treatments really, only when things are desperate I suppose, its his way of coping with the stress of all this (my mums the same). My sister and myself go the appointments for scan results because mum can't cope, she nearly passes out waiting for them to be read. It's harder on dad and us her being there.

        I fondly remember NicOz, she was one tough cookie. Im sad shes gone.

        Thanks again, and all the best to you Alison…hoping you are cured!

        Nahmi from Melbourne

      • March 25, 2012 at 2:28 pm
      AlisonC
      Participant
      Hi Nahmi

      No info on surgery after zelboraf I’m afraid although I would say don’t give up hope that it will all still be NED. I don’t think many Americans will have heard of Jim Stynes so to comment on that question, I think that for patients like him, they have an extensive network of fairly high profile friends so they tend to get intros to several different doctors who might offer more options.

      Honestly though, I don’t think it’s that as much as I think it’s being able to successfully lobby for the treatment you want and being higher profile gave him some power to do that. NicOz, who posted here for quite a while, was a clinical trials nurse herself (in Sydney) so when she had brain mets, she was able to argue and argue for SRS/Gamma knife for a long time ( 21 tumours treated that way I think, over 2 years) whereas I think most doctors would default to WBR with that many tumours.

      I think he was pretty determined (to be where he was in life) and that was what gave him the force to argue for what he wanted…

      Good luck for your Dad’s scans

      AlisonC
      Stage IIIB
      NED since 2001

      • March 25, 2012 at 2:28 pm
      AlisonC
      Participant
      Hi Nahmi

      No info on surgery after zelboraf I’m afraid although I would say don’t give up hope that it will all still be NED. I don’t think many Americans will have heard of Jim Stynes so to comment on that question, I think that for patients like him, they have an extensive network of fairly high profile friends so they tend to get intros to several different doctors who might offer more options.

      Honestly though, I don’t think it’s that as much as I think it’s being able to successfully lobby for the treatment you want and being higher profile gave him some power to do that. NicOz, who posted here for quite a while, was a clinical trials nurse herself (in Sydney) so when she had brain mets, she was able to argue and argue for SRS/Gamma knife for a long time ( 21 tumours treated that way I think, over 2 years) whereas I think most doctors would default to WBR with that many tumours.

      I think he was pretty determined (to be where he was in life) and that was what gave him the force to argue for what he wanted…

      Good luck for your Dad’s scans

      AlisonC
      Stage IIIB
      NED since 2001

      • March 26, 2012 at 12:27 pm
      FormerCaregiver
      Participant

      Nahmi, BRAF inhibitor resistance is a problem that researchers are trying hard to
      overcome. I understand that some early trial results have found that MEK/PI3K or HSP90
      inhibitors (XL888) may be beneficial. See:
      http://clincancerres.aacrjournals.org/content/early/2012/02/18/1078-0432.CCR-11-2612

      Hope this helps

      Frank from Australia

        • March 28, 2012 at 6:07 am
        deardad
        Participant

        Hi Frank,

        yes I have read about the MEK and XL888, I am asking the oncologist this Friday about it.

        Thanks again for posting.

        Nahmi

        • March 28, 2012 at 6:07 am
        deardad
        Participant

        Hi Frank,

        yes I have read about the MEK and XL888, I am asking the oncologist this Friday about it.

        Thanks again for posting.

        Nahmi

        • March 28, 2012 at 6:07 am
        deardad
        Participant

        Hi Frank,

        yes I have read about the MEK and XL888, I am asking the oncologist this Friday about it.

        Thanks again for posting.

        Nahmi

      • March 26, 2012 at 12:27 pm
      FormerCaregiver
      Participant

      Nahmi, BRAF inhibitor resistance is a problem that researchers are trying hard to
      overcome. I understand that some early trial results have found that MEK/PI3K or HSP90
      inhibitors (XL888) may be beneficial. See:
      http://clincancerres.aacrjournals.org/content/early/2012/02/18/1078-0432.CCR-11-2612

      Hope this helps

      Frank from Australia

      • March 26, 2012 at 12:27 pm
      FormerCaregiver
      Participant

      Nahmi, BRAF inhibitor resistance is a problem that researchers are trying hard to
      overcome. I understand that some early trial results have found that MEK/PI3K or HSP90
      inhibitors (XL888) may be beneficial. See:
      http://clincancerres.aacrjournals.org/content/early/2012/02/18/1078-0432.CCR-11-2612

      Hope this helps

      Frank from Australia

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