I think this is the treatment she had in mind.

This is the study that is cropping up in another thread here, as well as at MIF. It looks as though patients will be placed on either the Ipi/Interferon combo… OR will receive Keytruda as a solo agent. I've already seen several patients say they would drop the trial if they were placed in the interferon group. Fortunately, I never had to experience interferon, but from what you described above, it seems to be a rougher coaster ride than Ipi or Pembro!  

This is the study that is cropping up in another thread here, as well as at MIF. It looks as though patients will be placed on either the Ipi/Interferon combo… OR will receive Keytruda as a solo agent. I've already seen several patients say they would drop the trial if they were placed in the interferon group. Fortunately, I never had to experience interferon, but from what you described above, it seems to be a rougher coaster ride than Ipi or Pembro!  

This is the study that is cropping up in another thread here, as well as at MIF. It looks as though patients will be placed on either the Ipi/Interferon combo… OR will receive Keytruda as a solo agent. I've already seen several patients say they would drop the trial if they were placed in the interferon group. Fortunately, I never had to experience interferon, but from what you described above, it seems to be a rougher coaster ride than Ipi or Pembro!  

This is a tough call, because Keytruda/Pembro will still give you the abscopal effect, and the results of Keytruda are more immediate than Ipi. Additionally, the side effects of Keytruda have been more easily tolerated by most patients, with fewer GI issues leading to discontinuation of the drug, and steroids. I had no option but Plan B. The Ipi did nothing for stopping or slowing the brain tumors in my head, although I do know people who it worked very well for. Pembro still wasn't on the table of options for me at that time, so although I'm an odd BRAF… not FDA approved for Taf… I was able to take Mekinist just long enough to survive my way to Pembro. The general though at this point is to keep patients on Pembro for 18 months to 2 years, however many patients have ended earlier than that and still had lasting effects. Jimmy Carter is probably the best publicized example, having had only 7 months of treatment. It is certainly a discussion to have with the oncologists… particularly those who specialize in melanoma, as they can best tell you the most up to date (and even not yet published) mindsets.

This is a tough call, because Keytruda/Pembro will still give you the abscopal effect, and the results of Keytruda are more immediate than Ipi. Additionally, the side effects of Keytruda have been more easily tolerated by most patients, with fewer GI issues leading to discontinuation of the drug, and steroids. I had no option but Plan B. The Ipi did nothing for stopping or slowing the brain tumors in my head, although I do know people who it worked very well for. Pembro still wasn't on the table of options for me at that time, so although I'm an odd BRAF… not FDA approved for Taf… I was able to take Mekinist just long enough to survive my way to Pembro. The general though at this point is to keep patients on Pembro for 18 months to 2 years, however many patients have ended earlier than that and still had lasting effects. Jimmy Carter is probably the best publicized example, having had only 7 months of treatment. It is certainly a discussion to have with the oncologists… particularly those who specialize in melanoma, as they can best tell you the most up to date (and even not yet published) mindsets.

This is a tough call, because Keytruda/Pembro will still give you the abscopal effect, and the results of Keytruda are more immediate than Ipi. Additionally, the side effects of Keytruda have been more easily tolerated by most patients, with fewer GI issues leading to discontinuation of the drug, and steroids. I had no option but Plan B. The Ipi did nothing for stopping or slowing the brain tumors in my head, although I do know people who it worked very well for. Pembro still wasn't on the table of options for me at that time, so although I'm an odd BRAF… not FDA approved for Taf… I was able to take Mekinist just long enough to survive my way to Pembro. The general though at this point is to keep patients on Pembro for 18 months to 2 years, however many patients have ended earlier than that and still had lasting effects. Jimmy Carter is probably the best publicized example, having had only 7 months of treatment. It is certainly a discussion to have with the oncologists… particularly those who specialize in melanoma, as they can best tell you the most up to date (and even not yet published) mindsets.

Hi Niki, something to consider when writing about the abscopal effect is a peer exchange video that was published not too long ago where Dr. Weber and Dr. Jason Luke and a couple of other leading Oncologist talked about the abscopal effect!!! Best Wishes!!!Ed  https://www.youtube.com/watch?v=TBIxNfGhOJo

Hi Niki, something to consider when writing about the abscopal effect is a peer exchange video that was published not too long ago where Dr. Weber and Dr. Jason Luke and a couple of other leading Oncologist talked about the abscopal effect!!! Best Wishes!!!Ed  https://www.youtube.com/watch?v=TBIxNfGhOJo

This is an interesting video with valid points, yet still all unproven for or against both abscopal effect and/or radiation necrosis being increased (at the time of its recording). Unfortunately, we are still in the learning phases for gamma and srs in the brain combined with these immunotheraputic drugs. Trials for Pembro excluded patients with uncontrolled brain metastasis. Those patients who developed brain mets while in the trial had the option to continue in the trial without radiation treatment, or drop from the trial, receive the gamma and continue forward with other already FDA approved drug options. I'm in the unfortunate position of having to have learned much of this by living it and having friends who lived it. I had uncontrolled brain mets. The gamma treatments came at very regular intervals for me, all the time continuing with the Ipi infusions… and there was more gamma after Ipi. Fortunately, Pembro slowed the process, and I only had to have two gamma treatments after beginning the drug. We took no breaks from infusions, including one that came within a week of a gamma treatment. Am I proof that abscopal is a definite side benefit? No. I did not stop receiving my immunotherapy infusions, so my docs and I really can't say whether the remaining lesions in my lung were helped by this effect or simply a direct response of the drug itself. I doubt any oncologist would recommend ceasing continuation of a drug that is shrinking lesions, therefore… the abscopal effect will not likely ever be proven in a way that the doctors in this video were questioning their audience for personal evidence of. Is it scientifically possible? Yes. Should someone rely upon it to clear their disease? No. Lacking any adverse immune events that force a break in taking the drug, the current "correct" stopping point for Pembro is still conjecture, based upon the efficacy and durations learned in trials… whiiiiich did not involve patients with uncontrolled brain metastasis.  

All of that said…. as for "SnowWhite" and her dad… I applaud them for questioning the doctors and getting someone to perform the gamma. Brain mets carry the worst prognosis and carry the most harsh side effects. Most specialists will agree to target radiate. For follow up…. Should he choose Ipi or Keytruda for the potential benefit of abscopal effect? No. Should he discuss the trial she mentioned with his doctors? Maybe, why not? But grill them with questions, including why not attempt Ipi or Pembro first, as these are both FDA approved options for stage IV patients. Interferon (a potential part of this trial) carries hefty side effects. Ipi, while being effective for some… and a known shorter duration of treatment, has been proven in trials to be less effective (statistically) than Pembro, and carries a higher likelihood of adverse immune events. The most important thing is to BE INFORMED of the current options, and ASK QUESTIONS… loooots of questions. The doctors may have very rational reasons as to why opt into this trial versus making a direct decision as to which drug you would personally choose. But then, they may just have a need to have trial study proof of the information, and willing participants. I can't answer that question, I haven't spoken to the lead study.

This is an interesting video with valid points, yet still all unproven for or against both abscopal effect and/or radiation necrosis being increased (at the time of its recording). Unfortunately, we are still in the learning phases for gamma and srs in the brain combined with these immunotheraputic drugs. Trials for Pembro excluded patients with uncontrolled brain metastasis. Those patients who developed brain mets while in the trial had the option to continue in the trial without radiation treatment, or drop from the trial, receive the gamma and continue forward with other already FDA approved drug options. I'm in the unfortunate position of having to have learned much of this by living it and having friends who lived it. I had uncontrolled brain mets. The gamma treatments came at very regular intervals for me, all the time continuing with the Ipi infusions… and there was more gamma after Ipi. Fortunately, Pembro slowed the process, and I only had to have two gamma treatments after beginning the drug. We took no breaks from infusions, including one that came within a week of a gamma treatment. Am I proof that abscopal is a definite side benefit? No. I did not stop receiving my immunotherapy infusions, so my docs and I really can't say whether the remaining lesions in my lung were helped by this effect or simply a direct response of the drug itself. I doubt any oncologist would recommend ceasing continuation of a drug that is shrinking lesions, therefore… the abscopal effect will not likely ever be proven in a way that the doctors in this video were questioning their audience for personal evidence of. Is it scientifically possible? Yes. Should someone rely upon it to clear their disease? No. Lacking any adverse immune events that force a break in taking the drug, the current "correct" stopping point for Pembro is still conjecture, based upon the efficacy and durations learned in trials… whiiiiich did not involve patients with uncontrolled brain metastasis.  

All of that said…. as for "SnowWhite" and her dad… I applaud them for questioning the doctors and getting someone to perform the gamma. Brain mets carry the worst prognosis and carry the most harsh side effects. Most specialists will agree to target radiate. For follow up…. Should he choose Ipi or Keytruda for the potential benefit of abscopal effect? No. Should he discuss the trial she mentioned with his doctors? Maybe, why not? But grill them with questions, including why not attempt Ipi or Pembro first, as these are both FDA approved options for stage IV patients. Interferon (a potential part of this trial) carries hefty side effects. Ipi, while being effective for some… and a known shorter duration of treatment, has been proven in trials to be less effective (statistically) than Pembro, and carries a higher likelihood of adverse immune events. The most important thing is to BE INFORMED of the current options, and ASK QUESTIONS… loooots of questions. The doctors may have very rational reasons as to why opt into this trial versus making a direct decision as to which drug you would personally choose. But then, they may just have a need to have trial study proof of the information, and willing participants. I can't answer that question, I haven't spoken to the lead study.

This is an interesting video with valid points, yet still all unproven for or against both abscopal effect and/or radiation necrosis being increased (at the time of its recording). Unfortunately, we are still in the learning phases for gamma and srs in the brain combined with these immunotheraputic drugs. Trials for Pembro excluded patients with uncontrolled brain metastasis. Those patients who developed brain mets while in the trial had the option to continue in the trial without radiation treatment, or drop from the trial, receive the gamma and continue forward with other already FDA approved drug options. I'm in the unfortunate position of having to have learned much of this by living it and having friends who lived it. I had uncontrolled brain mets. The gamma treatments came at very regular intervals for me, all the time continuing with the Ipi infusions… and there was more gamma after Ipi. Fortunately, Pembro slowed the process, and I only had to have two gamma treatments after beginning the drug. We took no breaks from infusions, including one that came within a week of a gamma treatment. Am I proof that abscopal is a definite side benefit? No. I did not stop receiving my immunotherapy infusions, so my docs and I really can't say whether the remaining lesions in my lung were helped by this effect or simply a direct response of the drug itself. I doubt any oncologist would recommend ceasing continuation of a drug that is shrinking lesions, therefore… the abscopal effect will not likely ever be proven in a way that the doctors in this video were questioning their audience for personal evidence of. Is it scientifically possible? Yes. Should someone rely upon it to clear their disease? No. Lacking any adverse immune events that force a break in taking the drug, the current "correct" stopping point for Pembro is still conjecture, based upon the efficacy and durations learned in trials… whiiiiich did not involve patients with uncontrolled brain metastasis.  

All of that said…. as for "SnowWhite" and her dad… I applaud them for questioning the doctors and getting someone to perform the gamma. Brain mets carry the worst prognosis and carry the most harsh side effects. Most specialists will agree to target radiate. For follow up…. Should he choose Ipi or Keytruda for the potential benefit of abscopal effect? No. Should he discuss the trial she mentioned with his doctors? Maybe, why not? But grill them with questions, including why not attempt Ipi or Pembro first, as these are both FDA approved options for stage IV patients. Interferon (a potential part of this trial) carries hefty side effects. Ipi, while being effective for some… and a known shorter duration of treatment, has been proven in trials to be less effective (statistically) than Pembro, and carries a higher likelihood of adverse immune events. The most important thing is to BE INFORMED of the current options, and ASK QUESTIONS… loooots of questions. The doctors may have very rational reasons as to why opt into this trial versus making a direct decision as to which drug you would personally choose. But then, they may just have a need to have trial study proof of the information, and willing participants. I can't answer that question, I haven't spoken to the lead study.

Hi Niki, something to consider when writing about the abscopal effect is a peer exchange video that was published not too long ago where Dr. Weber and Dr. Jason Luke and a couple of other leading Oncologist talked about the abscopal effect!!! Best Wishes!!!Ed  https://www.youtube.com/watch?v=TBIxNfGhOJo