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Desperately seeking help with brain mets

Forums General Melanoma Community Desperately seeking help with brain mets

  • Post
    DonnaK
    Participant

      Hi.  I haven't posted for quite a while, but I've continued to read the boards daily and seen lots of great advice.  We learned last month that my husband progressed to stage IV with lung mets and we were prepared to enroll in a TIL trial at NCI today. Unfortunately, he was denied admittance at the last minute due to the appearance of numerous (>10) subcentimeter brain mets.  

      Hi.  I haven't posted for quite a while, but I've continued to read the boards daily and seen lots of great advice.  We learned last month that my husband progressed to stage IV with lung mets and we were prepared to enroll in a TIL trial at NCI today. Unfortunately, he was denied admittance at the last minute due to the appearance of numerous (>10) subcentimeter brain mets.  

      We are now seeking a new treatment plan.  The first doc suggested WBR along with zelboraf. Has anyone had success with htis combo? What other strategies have worked for people who have too many brain mets to do SRS/GK?  I'm really looking for any ideas or success stories as I need something to stay optimistic…

      Thanks in advance!  

    Viewing 17 reply threads
    • Replies
        BrianP
        Participant

          Have you seen the webinars on MIF?  I know there is one on Brain Met treatments.  I haven't watched that one but the ones I have watched have been great.  The problem is if it's more than a year old the info might be outdated (that's a good problem to have because it means there's newer better treatments.

          http://www.melanomainternational.org/news/ 

          BrianP
          Participant

            Have you seen the webinars on MIF?  I know there is one on Brain Met treatments.  I haven't watched that one but the ones I have watched have been great.  The problem is if it's more than a year old the info might be outdated (that's a good problem to have because it means there's newer better treatments.

            http://www.melanomainternational.org/news/ 

            BrianP
            Participant

              Have you seen the webinars on MIF?  I know there is one on Brain Met treatments.  I haven't watched that one but the ones I have watched have been great.  The problem is if it's more than a year old the info might be outdated (that's a good problem to have because it means there's newer better treatments.

              http://www.melanomainternational.org/news/ 

              jaketheflake
              Participant

                my husband is in a similiar situation,lung mets,found very small brain tumor,did the gamma knife,now it's gone,so he has recieved 3 yervoy(ippi) treatments,now,they have found 2 new brain mets,going to undergo gamma knife again.i do not kno (haven't heard from his oncologists)if they are going to hold off the 4th treatment of ippi(because of steriods),i am interested on the zelboraf,that they may use on ur husband,i haven't heard of that one,plz let me kno and i wish you and your husband well and much luck!!!!

                jaketheflake
                Participant

                  my husband is in a similiar situation,lung mets,found very small brain tumor,did the gamma knife,now it's gone,so he has recieved 3 yervoy(ippi) treatments,now,they have found 2 new brain mets,going to undergo gamma knife again.i do not kno (haven't heard from his oncologists)if they are going to hold off the 4th treatment of ippi(because of steriods),i am interested on the zelboraf,that they may use on ur husband,i haven't heard of that one,plz let me kno and i wish you and your husband well and much luck!!!!

                  jaketheflake
                  Participant

                    my husband is in a similiar situation,lung mets,found very small brain tumor,did the gamma knife,now it's gone,so he has recieved 3 yervoy(ippi) treatments,now,they have found 2 new brain mets,going to undergo gamma knife again.i do not kno (haven't heard from his oncologists)if they are going to hold off the 4th treatment of ippi(because of steriods),i am interested on the zelboraf,that they may use on ur husband,i haven't heard of that one,plz let me kno and i wish you and your husband well and much luck!!!!

                    POW
                    Participant

                      When my brother was first diagnosed, he was already Stage IV with numerous mets all over his body including 5 mets in the brain (2 > 1cm). He opted for WBR followed by Zelboraf. 

                      This is a tough call. Most radiation oncologists consider WBR to be "palliative" rather than "curative". In other words, it might (might) kill the current brain mets, but you can expect more mets later. And, unlike Cyberknife, you can only have WBR once in your life. The problem is that melanoma tumors anywhere in the body tend to bleed. When they bleed in the brain, that's a stroke (my brother's first symptom). Strokes can cause a lot of brain damage. Furthermore, brain mets can mess up your quality of life faster than mets in just about any other part of your body. So you need to treat brain mets quickly and aggresively, even if the treatment doesn't last forever (remember that NO melanoma treatments last forever except for a few very lucky individuals.)

                      On the other hand, WBR can cause brain damage. My brother's memory was affected– both his short term and his long term memory. I don't think this happens to everyone, but it can happen. People can have hearing problems or taste problems after WBR, too. 

                      Zelboraf (trade name for vemurafenib) is a drug that works on melanoma that has a mutation in the BRAF gene. Since your oncologist is recommending Z, I assume that your husband has a mutated BRAF gene. When Zelboraf works (in 50% of the patients who try it), it works quickly. People sometimes see tumors shrinking within days, always within weeks. Although no clinical trials have been done, anecdotal evidence is that Zelboraf does get into the brain and does kill brain mets. Unfortunately, melanoma tends to become resistant to Z in 6-9 months. So, like WBR, its effect is temporary. Another drug that is very similar to Zelboraf is dabrafenib, which also works on mutated BRAF genes and also works in the brain. Zelboraf is FDA approved;  dabrafenib is almost approved.

                      Your objective right now is to kill your husband's brain mets before they can grow bigger and before they bleed and cause a stroke. The best way to do that is probably the one-two punch your oncologist recommended– WBR plus Zelboraf. However, since your husband's mets are small and WBR can cause permanent brain damage, you might consider trying Zelboraf alone for 3 or 4 weeks and then getting another brain MRI. If the Z is working, keep going. If the Z is not working, add WBR. 

                      Just be aware that you should probably keep researching various immunotherapies like anti-PD1 and anti-LDL1 and some other things now in clinical trials. The best long-term results seem to be with immunotherapies. As always, they don't work for everyone and they don't usually work forever. But assume that both WBR and Zelboraf are short-term to intermediate-term treatments. It would be a good idea to have a Plan B in mind just in case you need it. 

                        kylez
                        Participant

                          Donna, I agree WBR is a tough call like POW says. I see your husband's doc is leaning towards WBR. If you could ask if there's a tumor board behind your doc (that he may be a part of) making this recommendation, or just him… also asking if his hospital facility uses a tumor board to make these kinds of recommendations. I don't know that practics is universal, but it helped me have confidence in my doc's recommendation, that there was a whole team of docs with him in the recommendation process. 

                          kylez
                          Participant

                            Donna, I agree WBR is a tough call like POW says. I see your husband's doc is leaning towards WBR. If you could ask if there's a tumor board behind your doc (that he may be a part of) making this recommendation, or just him… also asking if his hospital facility uses a tumor board to make these kinds of recommendations. I don't know that practics is universal, but it helped me have confidence in my doc's recommendation, that there was a whole team of docs with him in the recommendation process. 

                            kylez
                            Participant

                              Donna, I agree WBR is a tough call like POW says. I see your husband's doc is leaning towards WBR. If you could ask if there's a tumor board behind your doc (that he may be a part of) making this recommendation, or just him… also asking if his hospital facility uses a tumor board to make these kinds of recommendations. I don't know that practics is universal, but it helped me have confidence in my doc's recommendation, that there was a whole team of docs with him in the recommendation process. 

                            POW
                            Participant

                              When my brother was first diagnosed, he was already Stage IV with numerous mets all over his body including 5 mets in the brain (2 > 1cm). He opted for WBR followed by Zelboraf. 

                              This is a tough call. Most radiation oncologists consider WBR to be "palliative" rather than "curative". In other words, it might (might) kill the current brain mets, but you can expect more mets later. And, unlike Cyberknife, you can only have WBR once in your life. The problem is that melanoma tumors anywhere in the body tend to bleed. When they bleed in the brain, that's a stroke (my brother's first symptom). Strokes can cause a lot of brain damage. Furthermore, brain mets can mess up your quality of life faster than mets in just about any other part of your body. So you need to treat brain mets quickly and aggresively, even if the treatment doesn't last forever (remember that NO melanoma treatments last forever except for a few very lucky individuals.)

                              On the other hand, WBR can cause brain damage. My brother's memory was affected– both his short term and his long term memory. I don't think this happens to everyone, but it can happen. People can have hearing problems or taste problems after WBR, too. 

                              Zelboraf (trade name for vemurafenib) is a drug that works on melanoma that has a mutation in the BRAF gene. Since your oncologist is recommending Z, I assume that your husband has a mutated BRAF gene. When Zelboraf works (in 50% of the patients who try it), it works quickly. People sometimes see tumors shrinking within days, always within weeks. Although no clinical trials have been done, anecdotal evidence is that Zelboraf does get into the brain and does kill brain mets. Unfortunately, melanoma tends to become resistant to Z in 6-9 months. So, like WBR, its effect is temporary. Another drug that is very similar to Zelboraf is dabrafenib, which also works on mutated BRAF genes and also works in the brain. Zelboraf is FDA approved;  dabrafenib is almost approved.

                              Your objective right now is to kill your husband's brain mets before they can grow bigger and before they bleed and cause a stroke. The best way to do that is probably the one-two punch your oncologist recommended– WBR plus Zelboraf. However, since your husband's mets are small and WBR can cause permanent brain damage, you might consider trying Zelboraf alone for 3 or 4 weeks and then getting another brain MRI. If the Z is working, keep going. If the Z is not working, add WBR. 

                              Just be aware that you should probably keep researching various immunotherapies like anti-PD1 and anti-LDL1 and some other things now in clinical trials. The best long-term results seem to be with immunotherapies. As always, they don't work for everyone and they don't usually work forever. But assume that both WBR and Zelboraf are short-term to intermediate-term treatments. It would be a good idea to have a Plan B in mind just in case you need it. 

                              POW
                              Participant

                                When my brother was first diagnosed, he was already Stage IV with numerous mets all over his body including 5 mets in the brain (2 > 1cm). He opted for WBR followed by Zelboraf. 

                                This is a tough call. Most radiation oncologists consider WBR to be "palliative" rather than "curative". In other words, it might (might) kill the current brain mets, but you can expect more mets later. And, unlike Cyberknife, you can only have WBR once in your life. The problem is that melanoma tumors anywhere in the body tend to bleed. When they bleed in the brain, that's a stroke (my brother's first symptom). Strokes can cause a lot of brain damage. Furthermore, brain mets can mess up your quality of life faster than mets in just about any other part of your body. So you need to treat brain mets quickly and aggresively, even if the treatment doesn't last forever (remember that NO melanoma treatments last forever except for a few very lucky individuals.)

                                On the other hand, WBR can cause brain damage. My brother's memory was affected– both his short term and his long term memory. I don't think this happens to everyone, but it can happen. People can have hearing problems or taste problems after WBR, too. 

                                Zelboraf (trade name for vemurafenib) is a drug that works on melanoma that has a mutation in the BRAF gene. Since your oncologist is recommending Z, I assume that your husband has a mutated BRAF gene. When Zelboraf works (in 50% of the patients who try it), it works quickly. People sometimes see tumors shrinking within days, always within weeks. Although no clinical trials have been done, anecdotal evidence is that Zelboraf does get into the brain and does kill brain mets. Unfortunately, melanoma tends to become resistant to Z in 6-9 months. So, like WBR, its effect is temporary. Another drug that is very similar to Zelboraf is dabrafenib, which also works on mutated BRAF genes and also works in the brain. Zelboraf is FDA approved;  dabrafenib is almost approved.

                                Your objective right now is to kill your husband's brain mets before they can grow bigger and before they bleed and cause a stroke. The best way to do that is probably the one-two punch your oncologist recommended– WBR plus Zelboraf. However, since your husband's mets are small and WBR can cause permanent brain damage, you might consider trying Zelboraf alone for 3 or 4 weeks and then getting another brain MRI. If the Z is working, keep going. If the Z is not working, add WBR. 

                                Just be aware that you should probably keep researching various immunotherapies like anti-PD1 and anti-LDL1 and some other things now in clinical trials. The best long-term results seem to be with immunotherapies. As always, they don't work for everyone and they don't usually work forever. But assume that both WBR and Zelboraf are short-term to intermediate-term treatments. It would be a good idea to have a Plan B in mind just in case you need it. 

                                bikerwifee
                                Participant
                                  My husband has had wbr it was bad. He has had gamma kmife 5 times for 32 brain mets it worked sucessfully. Our problem is they cant get it under control in body and it keeps going to brain. Get the brain under control then maybe you can go with zelobraf its a miracle drug.

                                  I know you are scared ive been in your shoes and still am. Take it to God im a firm beleiver in miracles and have seen quit a few on this joirney. He is there in the darkest hour reach for him im pulling for you and praying. Remember you have a support team here. You can email me any times. Prayers and hugs being sent your way.

                                  Belva loving wife of 32 years to my warrior Lynn.

                                  bikerwifee
                                  Participant
                                    My husband has had wbr it was bad. He has had gamma kmife 5 times for 32 brain mets it worked sucessfully. Our problem is they cant get it under control in body and it keeps going to brain. Get the brain under control then maybe you can go with zelobraf its a miracle drug.

                                    I know you are scared ive been in your shoes and still am. Take it to God im a firm beleiver in miracles and have seen quit a few on this joirney. He is there in the darkest hour reach for him im pulling for you and praying. Remember you have a support team here. You can email me any times. Prayers and hugs being sent your way.

                                    Belva loving wife of 32 years to my warrior Lynn.

                                    bikerwifee
                                    Participant
                                      My husband has had wbr it was bad. He has had gamma kmife 5 times for 32 brain mets it worked sucessfully. Our problem is they cant get it under control in body and it keeps going to brain. Get the brain under control then maybe you can go with zelobraf its a miracle drug.

                                      I know you are scared ive been in your shoes and still am. Take it to God im a firm beleiver in miracles and have seen quit a few on this joirney. He is there in the darkest hour reach for him im pulling for you and praying. Remember you have a support team here. You can email me any times. Prayers and hugs being sent your way.

                                      Belva loving wife of 32 years to my warrior Lynn.

                                      kylez
                                      Participant

                                        Hi Donna,

                                        My understanding is that the limit for treating with Gamma Knife isn't so much the # of brain mets, but rather the total volume. So some have had more than a few treated. Have you gotten a recommendation yet from your docs? At the hospitals I've been treated at, each time they convened a tumor board to discuss/decide amongst themselves which course(s) of treatment to recommend. The board probably consisted of oncologists, radation oncologists and neurosurgeons.

                                        For larger brain mets, I think the standard of care is resection (if possible depending on location) plus follow up SRS. For smaller mets I believe the standard of care is SRS (I've had both CyberKnife and Gammar Knife. Gamma Knife is pretty flexible. I regard WBR as a last resort for me if the first 2 can't be done.

                                        Although It's not yet proven (by a large trial) that any systemic treatments at the same time or shortly thereafter resection or SRS is valuable, many oncologists are starting to think it might be. For myself, I would want to pursue systemic treatments.

                                        FWIW I ended up having 5 brain mets treated, 3 resected (between 2.5 and 2.5 cm in diameter), the rest zapped. After that I had explored NCI as well but was rejected for the same reason as your husband (>3 brain mets).  

                                        Hope that helps a little. Hope you are able to develop a plan of action with your doctors that makes sense (SRS and/or resection, or whatever else) and holds the best outcome possible. 

                                        Best, Kyle

                                        kylez
                                        Participant

                                          Hi Donna,

                                          My understanding is that the limit for treating with Gamma Knife isn't so much the # of brain mets, but rather the total volume. So some have had more than a few treated. Have you gotten a recommendation yet from your docs? At the hospitals I've been treated at, each time they convened a tumor board to discuss/decide amongst themselves which course(s) of treatment to recommend. The board probably consisted of oncologists, radation oncologists and neurosurgeons.

                                          For larger brain mets, I think the standard of care is resection (if possible depending on location) plus follow up SRS. For smaller mets I believe the standard of care is SRS (I've had both CyberKnife and Gammar Knife. Gamma Knife is pretty flexible. I regard WBR as a last resort for me if the first 2 can't be done.

                                          Although It's not yet proven (by a large trial) that any systemic treatments at the same time or shortly thereafter resection or SRS is valuable, many oncologists are starting to think it might be. For myself, I would want to pursue systemic treatments.

                                          FWIW I ended up having 5 brain mets treated, 3 resected (between 2.5 and 2.5 cm in diameter), the rest zapped. After that I had explored NCI as well but was rejected for the same reason as your husband (>3 brain mets).  

                                          Hope that helps a little. Hope you are able to develop a plan of action with your doctors that makes sense (SRS and/or resection, or whatever else) and holds the best outcome possible. 

                                          Best, Kyle

                                          kylez
                                          Participant

                                            Hi Donna,

                                            My understanding is that the limit for treating with Gamma Knife isn't so much the # of brain mets, but rather the total volume. So some have had more than a few treated. Have you gotten a recommendation yet from your docs? At the hospitals I've been treated at, each time they convened a tumor board to discuss/decide amongst themselves which course(s) of treatment to recommend. The board probably consisted of oncologists, radation oncologists and neurosurgeons.

                                            For larger brain mets, I think the standard of care is resection (if possible depending on location) plus follow up SRS. For smaller mets I believe the standard of care is SRS (I've had both CyberKnife and Gammar Knife. Gamma Knife is pretty flexible. I regard WBR as a last resort for me if the first 2 can't be done.

                                            Although It's not yet proven (by a large trial) that any systemic treatments at the same time or shortly thereafter resection or SRS is valuable, many oncologists are starting to think it might be. For myself, I would want to pursue systemic treatments.

                                            FWIW I ended up having 5 brain mets treated, 3 resected (between 2.5 and 2.5 cm in diameter), the rest zapped. After that I had explored NCI as well but was rejected for the same reason as your husband (>3 brain mets).  

                                            Hope that helps a little. Hope you are able to develop a plan of action with your doctors that makes sense (SRS and/or resection, or whatever else) and holds the best outcome possible. 

                                            Best, Kyle

                                              kylez
                                              Participant

                                                (between 2.5 and 3.5 cm)

                                                kylez
                                                Participant

                                                  (between 2.5 and 3.5 cm)

                                                  kylez
                                                  Participant

                                                    (between 2.5 and 3.5 cm)

                                                  DonnaK
                                                  Participant

                                                    Thank you so much for all the help! We watched the MIF webinar as soon as we returned from MD yesterday; I'm not sure when it was from, but it mainly focused on GK which is not an option for John right now.  It is a great webinar though for people new to the field.

                                                    After speaking with John's primary oncologist as well as another at Sloane Kettering, we've decided to forego WBR for now and start Zelboraf (same as vemurafinib, a b-Raf inhibitor…sorry for the name switch earlier).  This is somewhat against the advice of John's primary oncologist, but in line with my contacts at SK.  With any luck, we can then transition to Yervoy (+GK or WBR if still necessary) in a month or so…

                                                    Thanks again!

                                                    Donna

                                                    PS-Does anyone know when is the earliest potential approval date for any of the PD-1 inhibitors?

                                                    DonnaK
                                                    Participant

                                                      Thank you so much for all the help! We watched the MIF webinar as soon as we returned from MD yesterday; I'm not sure when it was from, but it mainly focused on GK which is not an option for John right now.  It is a great webinar though for people new to the field.

                                                      After speaking with John's primary oncologist as well as another at Sloane Kettering, we've decided to forego WBR for now and start Zelboraf (same as vemurafinib, a b-Raf inhibitor…sorry for the name switch earlier).  This is somewhat against the advice of John's primary oncologist, but in line with my contacts at SK.  With any luck, we can then transition to Yervoy (+GK or WBR if still necessary) in a month or so…

                                                      Thanks again!

                                                      Donna

                                                      PS-Does anyone know when is the earliest potential approval date for any of the PD-1 inhibitors?

                                                        kylez
                                                        Participant

                                                          Donna, 

                                                          I got conflicting opinions on a treatment decision from 2 oncologists once before. I had to pick between them. 

                                                          I've heard approximately 2015 for the BMS drug which recently entered phase III trials. Maybe that will be updated at ASCO in 2 weeks. The Merck one isn't as far along as the BMS yet. Too long for both of them.

                                                          Hoping that the Z will hold things in place. Did SK say how soon they wanted him to do SRS? My crude understanding is the sooner the better from the webinar, but I'm no doctor and every case is individual. 

                                                          Best wishes to you and John.

                                                          kylez
                                                          Participant

                                                            Donna, 

                                                            I got conflicting opinions on a treatment decision from 2 oncologists once before. I had to pick between them. 

                                                            I've heard approximately 2015 for the BMS drug which recently entered phase III trials. Maybe that will be updated at ASCO in 2 weeks. The Merck one isn't as far along as the BMS yet. Too long for both of them.

                                                            Hoping that the Z will hold things in place. Did SK say how soon they wanted him to do SRS? My crude understanding is the sooner the better from the webinar, but I'm no doctor and every case is individual. 

                                                            Best wishes to you and John.

                                                            kylez
                                                            Participant

                                                              Donna, 

                                                              I got conflicting opinions on a treatment decision from 2 oncologists once before. I had to pick between them. 

                                                              I've heard approximately 2015 for the BMS drug which recently entered phase III trials. Maybe that will be updated at ASCO in 2 weeks. The Merck one isn't as far along as the BMS yet. Too long for both of them.

                                                              Hoping that the Z will hold things in place. Did SK say how soon they wanted him to do SRS? My crude understanding is the sooner the better from the webinar, but I'm no doctor and every case is individual. 

                                                              Best wishes to you and John.

                                                            DonnaK
                                                            Participant

                                                              Thank you so much for all the help! We watched the MIF webinar as soon as we returned from MD yesterday; I'm not sure when it was from, but it mainly focused on GK which is not an option for John right now.  It is a great webinar though for people new to the field.

                                                              After speaking with John's primary oncologist as well as another at Sloane Kettering, we've decided to forego WBR for now and start Zelboraf (same as vemurafinib, a b-Raf inhibitor…sorry for the name switch earlier).  This is somewhat against the advice of John's primary oncologist, but in line with my contacts at SK.  With any luck, we can then transition to Yervoy (+GK or WBR if still necessary) in a month or so…

                                                              Thanks again!

                                                              Donna

                                                              PS-Does anyone know when is the earliest potential approval date for any of the PD-1 inhibitors?

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