Finding it hard…
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Finding it hard…

› Forums › General Melanoma Community › Finding it hard…

  • Post
    • May 14, 2012 at 8:19 am
    deardad
    Participant

    Well since the progression on Zelboraf, dad has 6 brain mets diagnosed last week and further progression through the body. He finished his first round of Temadol and has just started to experience dull headache. Feel like I'm sinking……I'm so worried I'm going to loose him soon. WBR is scheduled for Monday, but haven't read anything too promising about that. Since off the trial I feel the hospital have just given up on him, we called to tell them he was having headaches and they haven't bothered to get back to us.

    Well since the progression on Zelboraf, dad has 6 brain mets diagnosed last week and further progression through the body. He finished his first round of Temadol and has just started to experience dull headache. Feel like I'm sinking……I'm so worried I'm going to loose him soon. WBR is scheduled for Monday, but haven't read anything too promising about that. Since off the trial I feel the hospital have just given up on him, we called to tell them he was having headaches and they haven't bothered to get back to us.

    Dad has a couple of months supply of Zelboraf left, and Im wondering if we should reinduce him down the track? I hear someone in the UK did this and it worked (for how long I don't know).

    The biggest problems is the brain, any advice?

    Feel very sad, don't want to loose him.

    Nahmi from Melbourne

Viewing 14 reply threads
  • Replies
      • May 14, 2012 at 9:09 am
      FormerCaregiver
      Participant

      Nahmi, headache can be a side effect of the chemo. It can also have a number of other
      causes that may or may not be related to the brain mets.

      Hopefully, the hospital will get back to you. If you can't talk to his oncologist soon,
      why don't you ask his general practitioner for advice?

      Take care

      Frank from Australia

      • May 14, 2012 at 9:09 am
      FormerCaregiver
      Participant

      Nahmi, headache can be a side effect of the chemo. It can also have a number of other
      causes that may or may not be related to the brain mets.

      Hopefully, the hospital will get back to you. If you can't talk to his oncologist soon,
      why don't you ask his general practitioner for advice?

      Take care

      Frank from Australia

      • May 14, 2012 at 9:09 am
      FormerCaregiver
      Participant

      Nahmi, headache can be a side effect of the chemo. It can also have a number of other
      causes that may or may not be related to the brain mets.

      Hopefully, the hospital will get back to you. If you can't talk to his oncologist soon,
      why don't you ask his general practitioner for advice?

      Take care

      Frank from Australia

      • May 14, 2012 at 10:55 am
      MeNDave
      Participant

      Nahmi,

      I'm so sorry your dad isn't doing well.  I was in those same shoes 2 weeks ago, wondering if Dave was ever going to get better, and I remember that sinking feeling all too well.

      I'm curious, did they offer gamma knife on the mets?  Dave had 6 also, and he did the gamma. 

      I wish I had a magic wand that could make all of this go away.    You're both in my thoughts.

      Maria

        • May 14, 2012 at 11:40 am
        deardad
        Participant

        Hi Maria,

        No, I asked about gamma knife. The biggest cancer centre in Melbourne does not have that technology! Dad's oncologist was very dismissive of SRS, 1. because he said it's costly and 2. they don't have the equipment there. I asked if the mets were located in operable spots and he said yes but on both sides of the brain and usually they don't operate when both sides are involved. We are very behind in Australia truly! Dad's oncologist is supposed to be the one of best in his field (I'm sure he is but the access to trials and equipment is far behind the States). Made me feel like there wasn't much more they could do even though he was asymptomatic at the time. He put dad on Zelboraf very early in the piece and I will always question that move, never once was an immunotherapy mentioned, something that was potentially durable.

        How is Dave doing now after gamma knife? I hope it works for him….it's a very stressful road we are on.

        Take care and thanks for posting, the support is much appreciated.

        I'll keep in touch.

        Nahmi

        • May 14, 2012 at 2:54 pm
        kylez
        Participant

        Your Dad is in good hands to have you taking care of him. It's a tough situation your both dealing with.

        The first Gamma Knife machine in Australia went online in 2010 from what I read, at Macquarie University Hospital (however near or far that is from you…) Probably why the bi-annual Gamma Knife Society meeting was held in Australia this year.

        Last year I had a double craniotomy — L Parietal and R Temporal. Maybe I was lucky, that in some cases both sides of the brain can have resections performed at the sae time in one "double" craniotomy.

        Good lukc, Kyle

        • May 14, 2012 at 2:54 pm
        kylez
        Participant

        Your Dad is in good hands to have you taking care of him. It's a tough situation your both dealing with.

        The first Gamma Knife machine in Australia went online in 2010 from what I read, at Macquarie University Hospital (however near or far that is from you…) Probably why the bi-annual Gamma Knife Society meeting was held in Australia this year.

        Last year I had a double craniotomy — L Parietal and R Temporal. Maybe I was lucky, that in some cases both sides of the brain can have resections performed at the sae time in one "double" craniotomy.

        Good lukc, Kyle

        • May 14, 2012 at 2:54 pm
        kylez
        Participant

        Your Dad is in good hands to have you taking care of him. It's a tough situation your both dealing with.

        The first Gamma Knife machine in Australia went online in 2010 from what I read, at Macquarie University Hospital (however near or far that is from you…) Probably why the bi-annual Gamma Knife Society meeting was held in Australia this year.

        Last year I had a double craniotomy — L Parietal and R Temporal. Maybe I was lucky, that in some cases both sides of the brain can have resections performed at the sae time in one "double" craniotomy.

        Good lukc, Kyle

        • May 14, 2012 at 11:40 am
        deardad
        Participant

        Hi Maria,

        No, I asked about gamma knife. The biggest cancer centre in Melbourne does not have that technology! Dad's oncologist was very dismissive of SRS, 1. because he said it's costly and 2. they don't have the equipment there. I asked if the mets were located in operable spots and he said yes but on both sides of the brain and usually they don't operate when both sides are involved. We are very behind in Australia truly! Dad's oncologist is supposed to be the one of best in his field (I'm sure he is but the access to trials and equipment is far behind the States). Made me feel like there wasn't much more they could do even though he was asymptomatic at the time. He put dad on Zelboraf very early in the piece and I will always question that move, never once was an immunotherapy mentioned, something that was potentially durable.

        How is Dave doing now after gamma knife? I hope it works for him….it's a very stressful road we are on.

        Take care and thanks for posting, the support is much appreciated.

        I'll keep in touch.

        Nahmi

        • May 14, 2012 at 11:40 am
        deardad
        Participant

        Hi Maria,

        No, I asked about gamma knife. The biggest cancer centre in Melbourne does not have that technology! Dad's oncologist was very dismissive of SRS, 1. because he said it's costly and 2. they don't have the equipment there. I asked if the mets were located in operable spots and he said yes but on both sides of the brain and usually they don't operate when both sides are involved. We are very behind in Australia truly! Dad's oncologist is supposed to be the one of best in his field (I'm sure he is but the access to trials and equipment is far behind the States). Made me feel like there wasn't much more they could do even though he was asymptomatic at the time. He put dad on Zelboraf very early in the piece and I will always question that move, never once was an immunotherapy mentioned, something that was potentially durable.

        How is Dave doing now after gamma knife? I hope it works for him….it's a very stressful road we are on.

        Take care and thanks for posting, the support is much appreciated.

        I'll keep in touch.

        Nahmi

      • May 14, 2012 at 10:55 am
      MeNDave
      Participant

      Nahmi,

      I'm so sorry your dad isn't doing well.  I was in those same shoes 2 weeks ago, wondering if Dave was ever going to get better, and I remember that sinking feeling all too well.

      I'm curious, did they offer gamma knife on the mets?  Dave had 6 also, and he did the gamma. 

      I wish I had a magic wand that could make all of this go away.    You're both in my thoughts.

      Maria

      • May 14, 2012 at 10:55 am
      MeNDave
      Participant

      Nahmi,

      I'm so sorry your dad isn't doing well.  I was in those same shoes 2 weeks ago, wondering if Dave was ever going to get better, and I remember that sinking feeling all too well.

      I'm curious, did they offer gamma knife on the mets?  Dave had 6 also, and he did the gamma. 

      I wish I had a magic wand that could make all of this go away.    You're both in my thoughts.

      Maria

      • May 15, 2012 at 1:12 am
      bikerwife
      Participant
      Gamma knife my husband had 5 went for scans today they are gone only shadows left. He finished ippi march 26 first scan showed progression but 5 weeks ago the tumors started shrinking and we can really see them shrinking.

      God does miracles each and every day read Matthew 17 verse 20.

      Praying for you both.

      • May 15, 2012 at 1:12 am
      bikerwife
      Participant
      Gamma knife my husband had 5 went for scans today they are gone only shadows left. He finished ippi march 26 first scan showed progression but 5 weeks ago the tumors started shrinking and we can really see them shrinking.

      God does miracles each and every day read Matthew 17 verse 20.

      Praying for you both.

      • May 15, 2012 at 1:12 am
      bikerwife
      Participant
      Gamma knife my husband had 5 went for scans today they are gone only shadows left. He finished ippi march 26 first scan showed progression but 5 weeks ago the tumors started shrinking and we can really see them shrinking.

      God does miracles each and every day read Matthew 17 verse 20.

      Praying for you both.

      • May 15, 2012 at 2:09 am
      Tim–MRF
      Guest

      Nahmi:

      I am sorry to hear about your father's latest problems.  I am aware of the lack of gamma knife technology in Australia.  This is  a situation that clearly needs to be remedied.  I saw a good study on outcomes of melanoma patients with brain mets in Australia vs. United States and it was fairly clear that gamma knife makes a difference.

      I don't believe that reinduction to Zelboraf works, unlike Yervoy (ipi) where this does sometimes have a benefit.  The company that makes Zelboraf is running a clinical trial for people who have progressed on the drug.  The trial uses a combination of Zelboraf with a MEK inhibitor, and logically this should make a difference. 

      I don't know if this trial is available in Australia, but if you want me to I can find out.  Also, we are seeing a lot of interest in the US about a newer group of drugs that are called anti-PD1.  These drugs work much like ipi, but have a different target and early data are promising.  Again, not sure if the trials are open in Australia but I think they are.  I know that BMS plans to open a big Phase III trial for PD1 later this year in the US.

      Let me know if you want me to inquire further about these studies.

      Regards,

      Tim–MRF

      tturnham@melanoma.org

        • May 15, 2012 at 6:22 am
        deardad
        Participant

        Hi Tim,

        Thanks for that information. There is SRS in Melbourne but not Gamma knife, I made some equiries today. We were just about to go on the Zelboraf/MEK combo…but brain mets disqualified him. Antipd1 will never get here in time for my dad, it's the brain mets that ruin all trial plans we had.

        IPI is now not FDA approved and our oncologist didn't think it was worth trying.

        I dont know why a previous Zelboraf user cannot get the MEK even with brain mets.

        We are waiting WBR dates.

        Nahmi

        • May 15, 2012 at 6:22 am
        deardad
        Participant

        Hi Tim,

        Thanks for that information. There is SRS in Melbourne but not Gamma knife, I made some equiries today. We were just about to go on the Zelboraf/MEK combo…but brain mets disqualified him. Antipd1 will never get here in time for my dad, it's the brain mets that ruin all trial plans we had.

        IPI is now not FDA approved and our oncologist didn't think it was worth trying.

        I dont know why a previous Zelboraf user cannot get the MEK even with brain mets.

        We are waiting WBR dates.

        Nahmi

        • May 15, 2012 at 11:50 am
        benp
        Participant

        Hi Nahmi, 

        I would really get a second opinion on the SRS/Gamma Kinfe. How big are your Dad's brain mets? I actually have an appointment with the Gamma Knife centre here in Sydney on Thursday. I really recomend you watch the webinar on brain mets and Gamma Kinife; http://www.safefromthesun.org/news/brain_metastases1.html

        There a lot of disagreement about how many mets is "too many". If your Dad's mets are all reasonable small, then I would say that your oncologist is being too conservative, and you should definitely get a second opinion. 

        The treatment options in Australia are dismal in Australia compared to the US, or at least that's the way it seems.

        Ben.

        • May 15, 2012 at 11:50 am
        benp
        Participant

        Hi Nahmi, 

        I would really get a second opinion on the SRS/Gamma Kinfe. How big are your Dad's brain mets? I actually have an appointment with the Gamma Knife centre here in Sydney on Thursday. I really recomend you watch the webinar on brain mets and Gamma Kinife; http://www.safefromthesun.org/news/brain_metastases1.html

        There a lot of disagreement about how many mets is "too many". If your Dad's mets are all reasonable small, then I would say that your oncologist is being too conservative, and you should definitely get a second opinion. 

        The treatment options in Australia are dismal in Australia compared to the US, or at least that's the way it seems.

        Ben.

        • May 15, 2012 at 12:17 pm
        deardad
        Participant

        Ok, I just sent an email to a neurosurgeon in Melbourne that does SRS but not with a gamma knife. We haven't been told how big the mets are I think one was 8mm? Do you think WBR is reasonable then look at gamma knife, as we would have to come to Sydney theres nothing in Melbourne. How quickly did you organise an appointment? Our problem is time. Who would you recommend to see?

        Thanks for the insight.

        Nahmi

        • May 15, 2012 at 12:17 pm
        deardad
        Participant

        Ok, I just sent an email to a neurosurgeon in Melbourne that does SRS but not with a gamma knife. We haven't been told how big the mets are I think one was 8mm? Do you think WBR is reasonable then look at gamma knife, as we would have to come to Sydney theres nothing in Melbourne. How quickly did you organise an appointment? Our problem is time. Who would you recommend to see?

        Thanks for the insight.

        Nahmi

        • May 15, 2012 at 1:23 pm
        benp
        Participant
        8mm is really not that big. The limit for SRS is about 3cm. I have 6 also, and mine are that size. I’ve done quite a bit of reading about this, and from what I can tell, there’s not much difference in effectiveness between linac SRS and Gamma Knife. My appointment rook a couple of weeks. I see the melanoma team at Westmead Hospital. Personally, I would definitely do SRS before WBR (which I probably would not do in any case, my opinion). I can email you some papers on this if you would like.
        • May 15, 2012 at 1:23 pm
        benp
        Participant
        8mm is really not that big. The limit for SRS is about 3cm. I have 6 also, and mine are that size. I’ve done quite a bit of reading about this, and from what I can tell, there’s not much difference in effectiveness between linac SRS and Gamma Knife. My appointment rook a couple of weeks. I see the melanoma team at Westmead Hospital. Personally, I would definitely do SRS before WBR (which I probably would not do in any case, my opinion). I can email you some papers on this if you would like.
        • May 15, 2012 at 11:21 pm
        deardad
        Participant

        Thanks so much, my email is nahmif@yahoo.com.au. I emailed my dads onc and he said he could set up a referral to Westmead if we wanted, but he made the point of saying that he wasnt sure whether WBR or gamma was better. Our problem at the moment is that dads current mets were detected on a CT of head and neck and not an MRI, so the worry is that there could be smaller seedlings that are not visible to the eye. 

        Thanks again and hope things go well for you.

        Nahmi

        • May 15, 2012 at 11:21 pm
        deardad
        Participant

        Thanks so much, my email is nahmif@yahoo.com.au. I emailed my dads onc and he said he could set up a referral to Westmead if we wanted, but he made the point of saying that he wasnt sure whether WBR or gamma was better. Our problem at the moment is that dads current mets were detected on a CT of head and neck and not an MRI, so the worry is that there could be smaller seedlings that are not visible to the eye. 

        Thanks again and hope things go well for you.

        Nahmi

        • May 16, 2012 at 2:21 pm
        benp
        Participant
        Hi Nahmi,

        I just sent you some papers etc. on this. An MRI is really needed, and I would get a second set of scans at a different institution to ensure the results match. I’ve experienced a lot of variability in scan reports.

        Anyway, let me know what you decide and give me a call anytime.

        Good luck,
        Ben.

        • May 16, 2012 at 2:21 pm
        benp
        Participant
        Hi Nahmi,

        I just sent you some papers etc. on this. An MRI is really needed, and I would get a second set of scans at a different institution to ensure the results match. I’ve experienced a lot of variability in scan reports.

        Anyway, let me know what you decide and give me a call anytime.

        Good luck,
        Ben.

        • May 16, 2012 at 2:21 pm
        benp
        Participant
        Hi Nahmi,

        I just sent you some papers etc. on this. An MRI is really needed, and I would get a second set of scans at a different institution to ensure the results match. I’ve experienced a lot of variability in scan reports.

        Anyway, let me know what you decide and give me a call anytime.

        Good luck,
        Ben.

        • May 15, 2012 at 11:21 pm
        deardad
        Participant

        Thanks so much, my email is nahmif@yahoo.com.au. I emailed my dads onc and he said he could set up a referral to Westmead if we wanted, but he made the point of saying that he wasnt sure whether WBR or gamma was better. Our problem at the moment is that dads current mets were detected on a CT of head and neck and not an MRI, so the worry is that there could be smaller seedlings that are not visible to the eye. 

        Thanks again and hope things go well for you.

        Nahmi

        • May 15, 2012 at 1:23 pm
        benp
        Participant
        8mm is really not that big. The limit for SRS is about 3cm. I have 6 also, and mine are that size. I’ve done quite a bit of reading about this, and from what I can tell, there’s not much difference in effectiveness between linac SRS and Gamma Knife. My appointment rook a couple of weeks. I see the melanoma team at Westmead Hospital. Personally, I would definitely do SRS before WBR (which I probably would not do in any case, my opinion). I can email you some papers on this if you would like.
        • May 15, 2012 at 12:17 pm
        deardad
        Participant

        Ok, I just sent an email to a neurosurgeon in Melbourne that does SRS but not with a gamma knife. We haven't been told how big the mets are I think one was 8mm? Do you think WBR is reasonable then look at gamma knife, as we would have to come to Sydney theres nothing in Melbourne. How quickly did you organise an appointment? Our problem is time. Who would you recommend to see?

        Thanks for the insight.

        Nahmi

        • May 15, 2012 at 11:50 am
        benp
        Participant

        Hi Nahmi, 

        I would really get a second opinion on the SRS/Gamma Kinfe. How big are your Dad's brain mets? I actually have an appointment with the Gamma Knife centre here in Sydney on Thursday. I really recomend you watch the webinar on brain mets and Gamma Kinife; http://www.safefromthesun.org/news/brain_metastases1.html

        There a lot of disagreement about how many mets is "too many". If your Dad's mets are all reasonable small, then I would say that your oncologist is being too conservative, and you should definitely get a second opinion. 

        The treatment options in Australia are dismal in Australia compared to the US, or at least that's the way it seems.

        Ben.

        • May 15, 2012 at 6:22 am
        deardad
        Participant

        Hi Tim,

        Thanks for that information. There is SRS in Melbourne but not Gamma knife, I made some equiries today. We were just about to go on the Zelboraf/MEK combo…but brain mets disqualified him. Antipd1 will never get here in time for my dad, it's the brain mets that ruin all trial plans we had.

        IPI is now not FDA approved and our oncologist didn't think it was worth trying.

        I dont know why a previous Zelboraf user cannot get the MEK even with brain mets.

        We are waiting WBR dates.

        Nahmi

      • May 15, 2012 at 2:09 am
      Tim–MRF
      Guest

      Nahmi:

      I am sorry to hear about your father's latest problems.  I am aware of the lack of gamma knife technology in Australia.  This is  a situation that clearly needs to be remedied.  I saw a good study on outcomes of melanoma patients with brain mets in Australia vs. United States and it was fairly clear that gamma knife makes a difference.

      I don't believe that reinduction to Zelboraf works, unlike Yervoy (ipi) where this does sometimes have a benefit.  The company that makes Zelboraf is running a clinical trial for people who have progressed on the drug.  The trial uses a combination of Zelboraf with a MEK inhibitor, and logically this should make a difference. 

      I don't know if this trial is available in Australia, but if you want me to I can find out.  Also, we are seeing a lot of interest in the US about a newer group of drugs that are called anti-PD1.  These drugs work much like ipi, but have a different target and early data are promising.  Again, not sure if the trials are open in Australia but I think they are.  I know that BMS plans to open a big Phase III trial for PD1 later this year in the US.

      Let me know if you want me to inquire further about these studies.

      Regards,

      Tim–MRF

      tturnham@melanoma.org

      • May 15, 2012 at 2:09 am
      Tim–MRF
      Guest

      Nahmi:

      I am sorry to hear about your father's latest problems.  I am aware of the lack of gamma knife technology in Australia.  This is  a situation that clearly needs to be remedied.  I saw a good study on outcomes of melanoma patients with brain mets in Australia vs. United States and it was fairly clear that gamma knife makes a difference.

      I don't believe that reinduction to Zelboraf works, unlike Yervoy (ipi) where this does sometimes have a benefit.  The company that makes Zelboraf is running a clinical trial for people who have progressed on the drug.  The trial uses a combination of Zelboraf with a MEK inhibitor, and logically this should make a difference. 

      I don't know if this trial is available in Australia, but if you want me to I can find out.  Also, we are seeing a lot of interest in the US about a newer group of drugs that are called anti-PD1.  These drugs work much like ipi, but have a different target and early data are promising.  Again, not sure if the trials are open in Australia but I think they are.  I know that BMS plans to open a big Phase III trial for PD1 later this year in the US.

      Let me know if you want me to inquire further about these studies.

      Regards,

      Tim–MRF

      tturnham@melanoma.org

      • May 15, 2012 at 7:30 am
      FormerCaregiver
      Participant

      Nahmi, here are the current clinical trials that are available re MEK inhibitors:
      http://www.clinicaltrials.gov/ct2/results?term=melanoma+mek&recr=Open

      See also: A phase II study of single agent MEK162 in patients with advanced melanoma:
      http://www.clinicaltrials.gov/ct2/show/NCT01320085?term=melanoma+mek&rank=2

      Unfortunately, the selection criteria for most of these are fairly strict. The systemic
      treatment of mets that are in important areas such as the brain or liver carries some
      risk. Therefore, doctors are very careful in ensuring that any experimental drug will be
      reasonably safe with no unexpected serious side effects.

      Hope this helps

      Frank from Australia

      • May 15, 2012 at 7:30 am
      FormerCaregiver
      Participant

      Nahmi, here are the current clinical trials that are available re MEK inhibitors:
      http://www.clinicaltrials.gov/ct2/results?term=melanoma+mek&recr=Open

      See also: A phase II study of single agent MEK162 in patients with advanced melanoma:
      http://www.clinicaltrials.gov/ct2/show/NCT01320085?term=melanoma+mek&rank=2

      Unfortunately, the selection criteria for most of these are fairly strict. The systemic
      treatment of mets that are in important areas such as the brain or liver carries some
      risk. Therefore, doctors are very careful in ensuring that any experimental drug will be
      reasonably safe with no unexpected serious side effects.

      Hope this helps

      Frank from Australia

        • May 15, 2012 at 12:29 pm
        deardad
        Participant

        Yes the problem is the brain, we need that to be stable before we even consider a trial.

        Thanks for the information and support.

        Nahmi

        • May 15, 2012 at 12:29 pm
        deardad
        Participant

        Yes the problem is the brain, we need that to be stable before we even consider a trial.

        Thanks for the information and support.

        Nahmi

        • May 15, 2012 at 12:29 pm
        deardad
        Participant

        Yes the problem is the brain, we need that to be stable before we even consider a trial.

        Thanks for the information and support.

        Nahmi

      • May 15, 2012 at 7:30 am
      FormerCaregiver
      Participant

      Nahmi, here are the current clinical trials that are available re MEK inhibitors:
      http://www.clinicaltrials.gov/ct2/results?term=melanoma+mek&recr=Open

      See also: A phase II study of single agent MEK162 in patients with advanced melanoma:
      http://www.clinicaltrials.gov/ct2/show/NCT01320085?term=melanoma+mek&rank=2

      Unfortunately, the selection criteria for most of these are fairly strict. The systemic
      treatment of mets that are in important areas such as the brain or liver carries some
      risk. Therefore, doctors are very careful in ensuring that any experimental drug will be
      reasonably safe with no unexpected serious side effects.

      Hope this helps

      Frank from Australia

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