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Surviving Zelboraf “wash out” plus antibody ramp-up

Forums General Melanoma Community Surviving Zelboraf “wash out” plus antibody ramp-up

  • Post
    POW
    Participant

      My brother was diagnosed 6 months ago Stage IV with mets all over, including the brain. A combination of WBR and Zelboraf worked well for 5 months. Recently, a liver tumor started growing again and his oncologist said that he was becoming resistant to the Z.

      My brother was diagnosed 6 months ago Stage IV with mets all over, including the brain. A combination of WBR and Zelboraf worked well for 5 months. Recently, a liver tumor started growing again and his oncologist said that he was becoming resistant to the Z. He is now off Z for a 30 day "wash out" period and then he will either get into an anti-PD-1 clinical trial (fingers crossed) or he will try try Ipi. Both of these treatments are based on monoclonal antibodies.



      My concern is that melanoma that is resistant to Z often comes back more aggressive than it was originally. I think I'm beginning to see signs that his brain tumors are growing already (slurred speech, extreme fatigue, unstable walk) although this could just be paranoia on my part. My concern is that his tumors will grow so fast that he won't survive the wash out period plus the 4-8 weeks it takes these antibody-based treatments to exert an effect. But, really, what choice does he have? Any hopeful stories out there? Any suggestions?

    Viewing 14 reply threads
    • Replies
        Phil S
        Participant
          With the understanding that my husband is Braf negative and so has NO personal experience with Zelboraf, I will tell you what we know from spending several weeks in the hospital in Houston last year. I know that at least a few of the doctors at MDAnderson, feel it’s a mistake to stop Zelboraf completely upon reoccurrence. They mentioned that they feel the patient should stay on the Braf drugs, with other things added, such as IPI or chemos. I understand that your brother needs to wash out from Zelboraf for the anti pd1 trial but if he doesn’t get into that trial, consider combining Zelboraf and Ipi, especially if you think things are progressing quickly. God bless and keep up fighting and advocating for your brother! Valerie (Phil’s wife)
          Phil S
          Participant
            With the understanding that my husband is Braf negative and so has NO personal experience with Zelboraf, I will tell you what we know from spending several weeks in the hospital in Houston last year. I know that at least a few of the doctors at MDAnderson, feel it’s a mistake to stop Zelboraf completely upon reoccurrence. They mentioned that they feel the patient should stay on the Braf drugs, with other things added, such as IPI or chemos. I understand that your brother needs to wash out from Zelboraf for the anti pd1 trial but if he doesn’t get into that trial, consider combining Zelboraf and Ipi, especially if you think things are progressing quickly. God bless and keep up fighting and advocating for your brother! Valerie (Phil’s wife)
              POW
              Participant

                Thanks, Valerie. I also thought of combining Zel and Ipi. Unfortunately, my brother's oncologist refused to do that because it is an "off label" use and the VA prohibits such things. Actually, I've heard a couple of rumors that the clinical trials combining Zelboraf and Ipi are seeing significant liver toxicity. So maybe that combination will prove to be contraindicated for everyone. 

                POW
                Participant

                  Thanks, Valerie. I also thought of combining Zel and Ipi. Unfortunately, my brother's oncologist refused to do that because it is an "off label" use and the VA prohibits such things. Actually, I've heard a couple of rumors that the clinical trials combining Zelboraf and Ipi are seeing significant liver toxicity. So maybe that combination will prove to be contraindicated for everyone. 

                  POW
                  Participant

                    Thanks, Valerie. I also thought of combining Zel and Ipi. Unfortunately, my brother's oncologist refused to do that because it is an "off label" use and the VA prohibits such things. Actually, I've heard a couple of rumors that the clinical trials combining Zelboraf and Ipi are seeing significant liver toxicity. So maybe that combination will prove to be contraindicated for everyone. 

                  Phil S
                  Participant
                    With the understanding that my husband is Braf negative and so has NO personal experience with Zelboraf, I will tell you what we know from spending several weeks in the hospital in Houston last year. I know that at least a few of the doctors at MDAnderson, feel it’s a mistake to stop Zelboraf completely upon reoccurrence. They mentioned that they feel the patient should stay on the Braf drugs, with other things added, such as IPI or chemos. I understand that your brother needs to wash out from Zelboraf for the anti pd1 trial but if he doesn’t get into that trial, consider combining Zelboraf and Ipi, especially if you think things are progressing quickly. God bless and keep up fighting and advocating for your brother! Valerie (Phil’s wife)
                    awillett1991
                    Participant
                      I can’t speak to Anti PD1 but for Yervoy the standard first set of scans to evaluate for a possible response is at 12 weeks after starting, NOT 4-8. Often it takes longer to kick in. they scan again at 24 wks. This would be on top of any wash out period. This is not to say that people on here haven’t responded sooner, it’s just not typical. My understanding is that it takes 2 weeks for Zel to completely leave your system, but I understand trials want 30 days.

                      My Mel was more aggressive after I stopped Z, and I was/am still responding to it.

                      It’s always hard to know what to do, hopefully you are consulting with a melanoma specialist who is up front and clear with you on the exact trial requirements, because that is a whole other gamble and adds waiting time.

                      Best of luck to you and peace with your decision.

                      awillett1991
                      Participant
                        I can’t speak to Anti PD1 but for Yervoy the standard first set of scans to evaluate for a possible response is at 12 weeks after starting, NOT 4-8. Often it takes longer to kick in. they scan again at 24 wks. This would be on top of any wash out period. This is not to say that people on here haven’t responded sooner, it’s just not typical. My understanding is that it takes 2 weeks for Zel to completely leave your system, but I understand trials want 30 days.

                        My Mel was more aggressive after I stopped Z, and I was/am still responding to it.

                        It’s always hard to know what to do, hopefully you are consulting with a melanoma specialist who is up front and clear with you on the exact trial requirements, because that is a whole other gamble and adds waiting time.

                        Best of luck to you and peace with your decision.

                          POW
                          Participant

                            Thank you, Amy. You're right, of course. Ipi and the other immune-based therapies work slowly and the first scans aren't usually done until the 12 week mark. My figure of 4-8 weeks was a mixture of guess and wishful thinking. If they can SEE the tumors shrinking at 12 weeks, the ipi may have actually staretd to have its effect after 4 or 8 weeks. That's all I meant. 

                            And yes, we will be meeting with Dr. Gibney at Moffitt next week. I'm sure he will explain all the pros and cons of any trial my brother may be elegible for, including the waiting time. My brother will have some tough decisions to make. I just want to be prepared with as much solid information as I can so I will be able to help him decide. 

                            POW
                            Participant

                              Thank you, Amy. You're right, of course. Ipi and the other immune-based therapies work slowly and the first scans aren't usually done until the 12 week mark. My figure of 4-8 weeks was a mixture of guess and wishful thinking. If they can SEE the tumors shrinking at 12 weeks, the ipi may have actually staretd to have its effect after 4 or 8 weeks. That's all I meant. 

                              And yes, we will be meeting with Dr. Gibney at Moffitt next week. I'm sure he will explain all the pros and cons of any trial my brother may be elegible for, including the waiting time. My brother will have some tough decisions to make. I just want to be prepared with as much solid information as I can so I will be able to help him decide. 

                              POW
                              Participant

                                Thank you, Amy. You're right, of course. Ipi and the other immune-based therapies work slowly and the first scans aren't usually done until the 12 week mark. My figure of 4-8 weeks was a mixture of guess and wishful thinking. If they can SEE the tumors shrinking at 12 weeks, the ipi may have actually staretd to have its effect after 4 or 8 weeks. That's all I meant. 

                                And yes, we will be meeting with Dr. Gibney at Moffitt next week. I'm sure he will explain all the pros and cons of any trial my brother may be elegible for, including the waiting time. My brother will have some tough decisions to make. I just want to be prepared with as much solid information as I can so I will be able to help him decide. 

                              awillett1991
                              Participant
                                I can’t speak to Anti PD1 but for Yervoy the standard first set of scans to evaluate for a possible response is at 12 weeks after starting, NOT 4-8. Often it takes longer to kick in. they scan again at 24 wks. This would be on top of any wash out period. This is not to say that people on here haven’t responded sooner, it’s just not typical. My understanding is that it takes 2 weeks for Zel to completely leave your system, but I understand trials want 30 days.

                                My Mel was more aggressive after I stopped Z, and I was/am still responding to it.

                                It’s always hard to know what to do, hopefully you are consulting with a melanoma specialist who is up front and clear with you on the exact trial requirements, because that is a whole other gamble and adds waiting time.

                                Best of luck to you and peace with your decision.

                                lhaley
                                Participant

                                  As your brother is doing the wash out you might want to look further into the antipd 1 .  My onc told me that most of the antipd1 trials now mean you have to do ipi first.  You might ask the Dr. thought if your brother needs to do the ipi first.  Also antipd 1 has to have stable brain mets. 

                                  When I went off of the zel my Dr told me that the chemical itself will be out of my body in about 3 days but side effects will take about 3 weeks. He told me to stay out of the sun and continue to protect myself. He also told me that for the rest of my life I am at a high risk for squamish cell.  

                                  You are a great sister to your brother!

                                  Linda

                                  lhaley
                                  Participant

                                    As your brother is doing the wash out you might want to look further into the antipd 1 .  My onc told me that most of the antipd1 trials now mean you have to do ipi first.  You might ask the Dr. thought if your brother needs to do the ipi first.  Also antipd 1 has to have stable brain mets. 

                                    When I went off of the zel my Dr told me that the chemical itself will be out of my body in about 3 days but side effects will take about 3 weeks. He told me to stay out of the sun and continue to protect myself. He also told me that for the rest of my life I am at a high risk for squamish cell.  

                                    You are a great sister to your brother!

                                    Linda

                                      POW
                                      Participant

                                        Thanks, Linda. I hadn't heard that you have to taken ipi before you can try anti-PD1. I hope that is not the case for all anti-PD1 clinical trials! As for the stable brain mets, I know that is important. My brother's mets were stable as of early December. That is one reason why I am somewhat hopeful about him getting into a trial. That is also why I am being vigilant (probably hypervigilant) looking for signs of CNS problems while he is off Zelboraf. 

                                        Thanks, also, for the warning about staying out of the sun and watching for squamous cell carcinomas. Will do!

                                        POW
                                        Participant

                                          Thanks, Linda. I hadn't heard that you have to taken ipi before you can try anti-PD1. I hope that is not the case for all anti-PD1 clinical trials! As for the stable brain mets, I know that is important. My brother's mets were stable as of early December. That is one reason why I am somewhat hopeful about him getting into a trial. That is also why I am being vigilant (probably hypervigilant) looking for signs of CNS problems while he is off Zelboraf. 

                                          Thanks, also, for the warning about staying out of the sun and watching for squamous cell carcinomas. Will do!

                                          POW
                                          Participant

                                            Thanks, Linda. I hadn't heard that you have to taken ipi before you can try anti-PD1. I hope that is not the case for all anti-PD1 clinical trials! As for the stable brain mets, I know that is important. My brother's mets were stable as of early December. That is one reason why I am somewhat hopeful about him getting into a trial. That is also why I am being vigilant (probably hypervigilant) looking for signs of CNS problems while he is off Zelboraf. 

                                            Thanks, also, for the warning about staying out of the sun and watching for squamous cell carcinomas. Will do!

                                          lhaley
                                          Participant

                                            As your brother is doing the wash out you might want to look further into the antipd 1 .  My onc told me that most of the antipd1 trials now mean you have to do ipi first.  You might ask the Dr. thought if your brother needs to do the ipi first.  Also antipd 1 has to have stable brain mets. 

                                            When I went off of the zel my Dr told me that the chemical itself will be out of my body in about 3 days but side effects will take about 3 weeks. He told me to stay out of the sun and continue to protect myself. He also told me that for the rest of my life I am at a high risk for squamish cell.  

                                            You are a great sister to your brother!

                                            Linda

                                            DeniseK
                                            Participant
                                              Hi Pat,
                                              Your definitely a GREAT sister! Your brother is very lucky to have you and I’m sure you feel lucky to have him! I can’t answer your questions but I hope someone else can. So after having WBR they can’t do anymore SRS? How many brain lets does he have? I wonder if they can do surgery? I’m sure you’ve thought about all those things. When is he starting ipi? Hopefully it works quickly. I have read some people respond quicker then others so there’s hope. Hang in there! With this damn disease there are a lot of ” what ifs” but stay positive!
                                              All my love
                                              Denise
                                              DeniseK
                                              Participant
                                                Hi Pat,
                                                Your definitely a GREAT sister! Your brother is very lucky to have you and I’m sure you feel lucky to have him! I can’t answer your questions but I hope someone else can. So after having WBR they can’t do anymore SRS? How many brain lets does he have? I wonder if they can do surgery? I’m sure you’ve thought about all those things. When is he starting ipi? Hopefully it works quickly. I have read some people respond quicker then others so there’s hope. Hang in there! With this damn disease there are a lot of ” what ifs” but stay positive!
                                                All my love
                                                Denise
                                                  POW
                                                  Participant

                                                    Thanks, Denise. With all that you have been going through lately, you are super generous to continue reaching out to help the rest of us here. You're a mensch!

                                                    SRS can be done before or after WBR, or both. WBR can only be done once, but SRS can be done multiple times. My brother started with 5 brain mets and many others throughout his body. One brain met was very near the brain stem, which is particularly dangerous. WBR + Zelboraf stabilized or killed them all (it's hard to tell dead vs dormant via MRI). He develped one more brain met a few months later and that was treated with SRS in early October. By early December there was NED in the brain. There was, alas, a growing met in his liver. So his oncologist stopped Zelboraf and began preparing him for ipi in January. That's where we're at now. The uncertainty and "what ifs" are particularly hard for me to take (my brother is much more laid back about all this than I am). But I will take your advice a stay positive!

                                                    POW
                                                    Participant

                                                      Thanks, Denise. With all that you have been going through lately, you are super generous to continue reaching out to help the rest of us here. You're a mensch!

                                                      SRS can be done before or after WBR, or both. WBR can only be done once, but SRS can be done multiple times. My brother started with 5 brain mets and many others throughout his body. One brain met was very near the brain stem, which is particularly dangerous. WBR + Zelboraf stabilized or killed them all (it's hard to tell dead vs dormant via MRI). He develped one more brain met a few months later and that was treated with SRS in early October. By early December there was NED in the brain. There was, alas, a growing met in his liver. So his oncologist stopped Zelboraf and began preparing him for ipi in January. That's where we're at now. The uncertainty and "what ifs" are particularly hard for me to take (my brother is much more laid back about all this than I am). But I will take your advice a stay positive!

                                                      sharmon
                                                      Participant

                                                        Brent was on the Mek trial at Md anderson and got a met in his liver.  He went to Mayo in Minn. and had it ablated and never missed a more than a few days of treatment on the MEK inhibitor.  Email me if you need more information.

                                                        Sharmon

                                                        sharmon
                                                        Participant

                                                          Brent was on the Mek trial at Md anderson and got a met in his liver.  He went to Mayo in Minn. and had it ablated and never missed a more than a few days of treatment on the MEK inhibitor.  Email me if you need more information.

                                                          Sharmon

                                                          sharmon
                                                          Participant

                                                            Brent was on the Mek trial at Md anderson and got a met in his liver.  He went to Mayo in Minn. and had it ablated and never missed a more than a few days of treatment on the MEK inhibitor.  Email me if you need more information.

                                                            Sharmon

                                                            POW
                                                            Participant

                                                              Thanks, Denise. With all that you have been going through lately, you are super generous to continue reaching out to help the rest of us here. You're a mensch!

                                                              SRS can be done before or after WBR, or both. WBR can only be done once, but SRS can be done multiple times. My brother started with 5 brain mets and many others throughout his body. One brain met was very near the brain stem, which is particularly dangerous. WBR + Zelboraf stabilized or killed them all (it's hard to tell dead vs dormant via MRI). He develped one more brain met a few months later and that was treated with SRS in early October. By early December there was NED in the brain. There was, alas, a growing met in his liver. So his oncologist stopped Zelboraf and began preparing him for ipi in January. That's where we're at now. The uncertainty and "what ifs" are particularly hard for me to take (my brother is much more laid back about all this than I am). But I will take your advice a stay positive!

                                                            DeniseK
                                                            Participant
                                                              Hi Pat,
                                                              Your definitely a GREAT sister! Your brother is very lucky to have you and I’m sure you feel lucky to have him! I can’t answer your questions but I hope someone else can. So after having WBR they can’t do anymore SRS? How many brain lets does he have? I wonder if they can do surgery? I’m sure you’ve thought about all those things. When is he starting ipi? Hopefully it works quickly. I have read some people respond quicker then others so there’s hope. Hang in there! With this damn disease there are a lot of ” what ifs” but stay positive!
                                                              All my love
                                                              Denise
                                                              LynnLuc
                                                              Participant

                                                                Wondering what immunotherapy trial will permit brain mets.  Yervoy* Ipi)? I don't know of any Anti PD 1 trials that will accept brain mets unless they are stable.

                                                                  buffcody
                                                                  Participant

                                                                    I started ipi with two brain mets at the University of Michigan, not as part of a clinical trial but standard treatment. SRS was deliberately held off unitl I was five weeks into the treatment for hypothesized synergistic effect.

                                                                    buffcody
                                                                    Participant

                                                                      I started ipi with two brain mets at the University of Michigan, not as part of a clinical trial but standard treatment. SRS was deliberately held off unitl I was five weeks into the treatment for hypothesized synergistic effect.

                                                                      buffcody
                                                                      Participant

                                                                        I started ipi with two brain mets at the University of Michigan, not as part of a clinical trial but standard treatment. SRS was deliberately held off unitl I was five weeks into the treatment for hypothesized synergistic effect.

                                                                      LynnLuc
                                                                      Participant

                                                                        Wondering what immunotherapy trial will permit brain mets.  Yervoy* Ipi)? I don't know of any Anti PD 1 trials that will accept brain mets unless they are stable.

                                                                        LynnLuc
                                                                        Participant

                                                                          Wondering what immunotherapy trial will permit brain mets.  Yervoy* Ipi)? I don't know of any Anti PD 1 trials that will accept brain mets unless they are stable.

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