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Newly diagnosed stage 4 – which gene/mutation testing needed?
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Newly diagnosed stage 4 – which gene/mutation testing needed?

› Forums › General Melanoma Community › Newly diagnosed stage 4 – which gene/mutation testing needed?

  • Post
    • June 21, 2015 at 8:39 pm
    cbeckner98
    Participant

      Hi all,

      My 75-year-old father was diagnosed with Stage 4 melanoma this week and it has spread to his lungs (one tumor) and brain (a few small lesions).  The doctors have already started him on whole head radiation given the size/number of his brain lesions and then we go to SCCA this coming Wednesday to see Dr. Thompson.  They did not initially test his biopsy for BRAF but, after we pushed, they are going to do so this coming week.  Given that we needed to push, what any other testing (genetic or of his biopsy) should we push for?  We're only a few days into figuring all of this out – and having the diagnosis sink in – but we have already discovered that we need to advocate for him and so I'm wondering what other newer gene/immune therapies to push to have him tested for.  Any advice on this would be appreciated…  Have any of you traveled to the UK or Europe for non-FDA approved drugs and/or clinical trials?  Was your local melanoma specialist willing to refer you?  Any advice on this would be appreciated.

      My dad has been an internal medicine physician in a rural area for almost 35 years so we're shutting his practice down which has meant a lot to deal with alongside this diagnosis.  He doesn't have many symptoms – only some vision issues in one eye – so we're shocked by this obviously.

      Also, for those who have been treated by ipi or BRAF drugs, how bad are the side effects?  My dad has been tired with the radiation/steriods to reduce the brain lesion swelling to date – but, it's going to get much worse when and if he goes on these drugs, right?

      Lastly, if anyone knows of melanoma support groups in western Washington/Seattle-area, any info would be appreciated.  Both of my parents are really struggling right now so it may be nice for them to connect with others going through this.  This diagnosis is devastating and can feel very lonely at times!

      So glad to find this resource online and we look forward to learning from all of you…

      Carrie

    Viewing 8 reply threads
    • Replies
        • June 22, 2015 at 1:07 am
        arthurjedi007
        Participant

          A few small lesions to the brain and they do whole brain radiation seems odd. I assume there were really more than a few. Also they say gamma knife is limited by size but not really true. For mine that was bigger than one beam they just did 2 beams. 

          As far as side affects they vary a lot from person to person. Especially the braf meds. On zelboraf I had 24 side affects. It was awful for me. But others it is great. For the braf Mek combo I had less. Mostly fevers. Common seems to be the sun. It can quickly cause burns and skin cancers. Uv clothing of 50+ is a must for me.

          now the immunotherapy like yervoy can be severe for some. Like petuitary gland or colitis. The pd1s can also but seems way less common.

          the best treatment is still the yervoy pd1 combo trial. But it can have severe but according to docs manageable side affects. But since he has few tumors maybe standard treatment will work good.

          As far as his eye they should check it for ocular melanoma in my opinion.

          We also commonly say he needs to get to a melanoma specialist because they should know melanoma treatments and have an urgency.

          If he opts for standard treatment it might have been good if he had gotten a couple doses of yervoy then gamma knife to the head. But too late now. It still baffles me why they went with whole brain but they saw the scans so they should know best. Also it sounds like he's having a bad time if he has to have steroids. I was on them once when I was almost paralyzed and they were nasty stuff for me.

          Artie

           

          • June 22, 2015 at 1:07 am
          arthurjedi007
          Participant

            A few small lesions to the brain and they do whole brain radiation seems odd. I assume there were really more than a few. Also they say gamma knife is limited by size but not really true. For mine that was bigger than one beam they just did 2 beams. 

            As far as side affects they vary a lot from person to person. Especially the braf meds. On zelboraf I had 24 side affects. It was awful for me. But others it is great. For the braf Mek combo I had less. Mostly fevers. Common seems to be the sun. It can quickly cause burns and skin cancers. Uv clothing of 50+ is a must for me.

            now the immunotherapy like yervoy can be severe for some. Like petuitary gland or colitis. The pd1s can also but seems way less common.

            the best treatment is still the yervoy pd1 combo trial. But it can have severe but according to docs manageable side affects. But since he has few tumors maybe standard treatment will work good.

            As far as his eye they should check it for ocular melanoma in my opinion.

            We also commonly say he needs to get to a melanoma specialist because they should know melanoma treatments and have an urgency.

            If he opts for standard treatment it might have been good if he had gotten a couple doses of yervoy then gamma knife to the head. But too late now. It still baffles me why they went with whole brain but they saw the scans so they should know best. Also it sounds like he's having a bad time if he has to have steroids. I was on them once when I was almost paralyzed and they were nasty stuff for me.

            Artie

             

            • June 22, 2015 at 1:07 am
            arthurjedi007
            Participant

              A few small lesions to the brain and they do whole brain radiation seems odd. I assume there were really more than a few. Also they say gamma knife is limited by size but not really true. For mine that was bigger than one beam they just did 2 beams. 

              As far as side affects they vary a lot from person to person. Especially the braf meds. On zelboraf I had 24 side affects. It was awful for me. But others it is great. For the braf Mek combo I had less. Mostly fevers. Common seems to be the sun. It can quickly cause burns and skin cancers. Uv clothing of 50+ is a must for me.

              now the immunotherapy like yervoy can be severe for some. Like petuitary gland or colitis. The pd1s can also but seems way less common.

              the best treatment is still the yervoy pd1 combo trial. But it can have severe but according to docs manageable side affects. But since he has few tumors maybe standard treatment will work good.

              As far as his eye they should check it for ocular melanoma in my opinion.

              We also commonly say he needs to get to a melanoma specialist because they should know melanoma treatments and have an urgency.

              If he opts for standard treatment it might have been good if he had gotten a couple doses of yervoy then gamma knife to the head. But too late now. It still baffles me why they went with whole brain but they saw the scans so they should know best. Also it sounds like he's having a bad time if he has to have steroids. I was on them once when I was almost paralyzed and they were nasty stuff for me.

              Artie

               

              • June 22, 2015 at 1:33 am
              Bubbles
              Participant

                Artie is correct!!!  You need a melanoma specialist and fast.  Usually SRS is preferred.  Additionally, whether WBR or SRS….we have found that radiation is much improved when combined with…or rapidly followed by immunotherapy.  Ipi should be started ASAP!!!  It is FDA approved. There is no reason why it can't be started TODAY!!!  Anti-PD1 drugs are approved as well:  nivo/opdivo or pembro/keytruda. However, they are approved for use only after patients fail ipi, and if BRAF positive, the BRAF inhibitors as well.  Melanoma biopsies should automatically be tested for BRAF status.  You can use the search bubble to the top left hand corner of my blog for all these terms and treatments.  Ipi has an approximate 15% response rate.  Anti-PD1 products a 30-40% response rate.  BRAF inhibitors (for BRAF positive patients) have an 80% or better response rate.  However, in the recent past, tumor work around occurred in about 6-9 months.  Adding a MEK inhibitor to the BRAF inhibitors and using intermittent dosing schedules has given many patients years of stability/remission.  The best response rates going are to the ipi/nivo combo at 80+% with better duration of response…but the combo is only available in trials.  Additionally, increased side effects come with increased response rates…which might be something to consider given your father's age.  Search my blog for topics that interest you.  Ask questions here.  This forum contains a wealth of generous souls with a great deal of information.  Wishing you and your dad my best, celeste

                • June 22, 2015 at 1:33 am
                Bubbles
                Participant

                  Artie is correct!!!  You need a melanoma specialist and fast.  Usually SRS is preferred.  Additionally, whether WBR or SRS….we have found that radiation is much improved when combined with…or rapidly followed by immunotherapy.  Ipi should be started ASAP!!!  It is FDA approved. There is no reason why it can't be started TODAY!!!  Anti-PD1 drugs are approved as well:  nivo/opdivo or pembro/keytruda. However, they are approved for use only after patients fail ipi, and if BRAF positive, the BRAF inhibitors as well.  Melanoma biopsies should automatically be tested for BRAF status.  You can use the search bubble to the top left hand corner of my blog for all these terms and treatments.  Ipi has an approximate 15% response rate.  Anti-PD1 products a 30-40% response rate.  BRAF inhibitors (for BRAF positive patients) have an 80% or better response rate.  However, in the recent past, tumor work around occurred in about 6-9 months.  Adding a MEK inhibitor to the BRAF inhibitors and using intermittent dosing schedules has given many patients years of stability/remission.  The best response rates going are to the ipi/nivo combo at 80+% with better duration of response…but the combo is only available in trials.  Additionally, increased side effects come with increased response rates…which might be something to consider given your father's age.  Search my blog for topics that interest you.  Ask questions here.  This forum contains a wealth of generous souls with a great deal of information.  Wishing you and your dad my best, celeste

                  • June 22, 2015 at 1:33 am
                  Bubbles
                  Participant

                    Artie is correct!!!  You need a melanoma specialist and fast.  Usually SRS is preferred.  Additionally, whether WBR or SRS….we have found that radiation is much improved when combined with…or rapidly followed by immunotherapy.  Ipi should be started ASAP!!!  It is FDA approved. There is no reason why it can't be started TODAY!!!  Anti-PD1 drugs are approved as well:  nivo/opdivo or pembro/keytruda. However, they are approved for use only after patients fail ipi, and if BRAF positive, the BRAF inhibitors as well.  Melanoma biopsies should automatically be tested for BRAF status.  You can use the search bubble to the top left hand corner of my blog for all these terms and treatments.  Ipi has an approximate 15% response rate.  Anti-PD1 products a 30-40% response rate.  BRAF inhibitors (for BRAF positive patients) have an 80% or better response rate.  However, in the recent past, tumor work around occurred in about 6-9 months.  Adding a MEK inhibitor to the BRAF inhibitors and using intermittent dosing schedules has given many patients years of stability/remission.  The best response rates going are to the ipi/nivo combo at 80+% with better duration of response…but the combo is only available in trials.  Additionally, increased side effects come with increased response rates…which might be something to consider given your father's age.  Search my blog for topics that interest you.  Ask questions here.  This forum contains a wealth of generous souls with a great deal of information.  Wishing you and your dad my best, celeste

                    • June 22, 2015 at 1:44 am
                    Bubbles
                    Participant
                        • June 22, 2015 at 3:05 am
                        Manfred
                        Participant

                          I am your fathers age and have stage IV melanoma since 2011,no known primery.I visited  Dr.Thomson for a second opinion, other wise I am using Swedish Cancer Institute-Dr Goodman.If you contact me with a pm I will give you my # and we can talk.

                          Manfred

                           

                          • June 22, 2015 at 3:42 am
                          cbeckner98
                          Participant

                            Thank you, all, for the information!  Sending the links here and this thread on to my siblings too – we have so much to learn and not much time!  We really pushed on the doctors regarding the need to begin whole brain radiation right away.  It was the day after his official diagnosis and the doctors urged us to start that day.  Probably not a good sign…  Hoping too that he will get on the immunotherapy drugs by Wednesday (when our visit is scheduled) and/or into a clinical trial.  We have heard that he may have to be 2-wks steriod free so that may cause a slight delay.  Manfred, just sent you my cell number so hopefully we can speak soon.

                            Please keep the advice coming!  Thank you!!!

                            Carrie

                            • June 22, 2015 at 3:42 am
                            cbeckner98
                            Participant

                              Thank you, all, for the information!  Sending the links here and this thread on to my siblings too – we have so much to learn and not much time!  We really pushed on the doctors regarding the need to begin whole brain radiation right away.  It was the day after his official diagnosis and the doctors urged us to start that day.  Probably not a good sign…  Hoping too that he will get on the immunotherapy drugs by Wednesday (when our visit is scheduled) and/or into a clinical trial.  We have heard that he may have to be 2-wks steriod free so that may cause a slight delay.  Manfred, just sent you my cell number so hopefully we can speak soon.

                              Please keep the advice coming!  Thank you!!!

                              Carrie

                              • June 22, 2015 at 3:42 am
                              cbeckner98
                              Participant

                                Thank you, all, for the information!  Sending the links here and this thread on to my siblings too – we have so much to learn and not much time!  We really pushed on the doctors regarding the need to begin whole brain radiation right away.  It was the day after his official diagnosis and the doctors urged us to start that day.  Probably not a good sign…  Hoping too that he will get on the immunotherapy drugs by Wednesday (when our visit is scheduled) and/or into a clinical trial.  We have heard that he may have to be 2-wks steriod free so that may cause a slight delay.  Manfred, just sent you my cell number so hopefully we can speak soon.

                                Please keep the advice coming!  Thank you!!!

                                Carrie

                                • June 22, 2015 at 3:05 am
                                Manfred
                                Participant

                                  I am your fathers age and have stage IV melanoma since 2011,no known primery.I visited  Dr.Thomson for a second opinion, other wise I am using Swedish Cancer Institute-Dr Goodman.If you contact me with a pm I will give you my # and we can talk.

                                  Manfred

                                   

                                  • June 22, 2015 at 3:05 am
                                  Manfred
                                  Participant

                                    I am your fathers age and have stage IV melanoma since 2011,no known primery.I visited  Dr.Thomson for a second opinion, other wise I am using Swedish Cancer Institute-Dr Goodman.If you contact me with a pm I will give you my # and we can talk.

                                    Manfred

                                     

                                  • June 22, 2015 at 1:44 am
                                  Bubbles
                                  Participant
                                    • June 22, 2015 at 1:44 am
                                    Bubbles
                                    Participant
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