Thinking…. Oh my!!

Coming off zelboraf last november and doing ipi I experienced rapid tumor growth especially in my left scapula tumor. Hopefully your husband didn't and it is only his LDH. That is why they said ipi failed just by seeing the scan 2 weeks after the 4th dose. I then did the taf/mek combo which was the first med that worked some. After 8 or so weeks most everything stayed the same except again that left scapula plus some new stuff showed up. Between that and the time I finally got to start pd1 in May I could visibly see the stuff in my collar bulge up. Same with the left scapula.

So what I'm trying to say is it is really hard to say which medicine is going to work. Despite my local doc's blunder with my latest scan report keytruda (merck's pd1) seems to have been the best for me. After 9 doses it is down to "only mild growth" and no new stuff. In my opinion that is fantastic .

So keytruda could do your husband good. There is also antibody drug conjugates at Sarah Cannon in Nashville. Also PDL is going on at places. There is Dr Rosenberg's tumor infiltrating lymphocytes (til) but from what I hear from Catherine Poole it is very toxic, requires someone in really good physical condition, is unproven. Then if you can there is also Bristol Myers phase 1 trials combining their PD1 (nivolumab) with various things like anti-kir and anti-lag-3 and maybe other things. Those other immunotherapies they are trying can be found out at their big 5 (university chicago, john hopkins in baltimore maryland, dana farber in boston, msk in ny, providence in portland oregon). One interesting thing is it seems like the anti-lag trial is primarily for those who progress on pd1 alone. I was supposed to go to Chicago yesterday but with my leg and hip not letting me walk I couldn't make it.

Artie

Coming off zelboraf last november and doing ipi I experienced rapid tumor growth especially in my left scapula tumor. Hopefully your husband didn't and it is only his LDH. That is why they said ipi failed just by seeing the scan 2 weeks after the 4th dose. I then did the taf/mek combo which was the first med that worked some. After 8 or so weeks most everything stayed the same except again that left scapula plus some new stuff showed up. Between that and the time I finally got to start pd1 in May I could visibly see the stuff in my collar bulge up. Same with the left scapula.

So what I'm trying to say is it is really hard to say which medicine is going to work. Despite my local doc's blunder with my latest scan report keytruda (merck's pd1) seems to have been the best for me. After 9 doses it is down to "only mild growth" and no new stuff. In my opinion that is fantastic .

So keytruda could do your husband good. There is also antibody drug conjugates at Sarah Cannon in Nashville. Also PDL is going on at places. There is Dr Rosenberg's tumor infiltrating lymphocytes (til) but from what I hear from Catherine Poole it is very toxic, requires someone in really good physical condition, is unproven. Then if you can there is also Bristol Myers phase 1 trials combining their PD1 (nivolumab) with various things like anti-kir and anti-lag-3 and maybe other things. Those other immunotherapies they are trying can be found out at their big 5 (university chicago, john hopkins in baltimore maryland, dana farber in boston, msk in ny, providence in portland oregon). One interesting thing is it seems like the anti-lag trial is primarily for those who progress on pd1 alone. I was supposed to go to Chicago yesterday but with my leg and hip not letting me walk I couldn't make it.

Artie

Coming off zelboraf last november and doing ipi I experienced rapid tumor growth especially in my left scapula tumor. Hopefully your husband didn't and it is only his LDH. That is why they said ipi failed just by seeing the scan 2 weeks after the 4th dose. I then did the taf/mek combo which was the first med that worked some. After 8 or so weeks most everything stayed the same except again that left scapula plus some new stuff showed up. Between that and the time I finally got to start pd1 in May I could visibly see the stuff in my collar bulge up. Same with the left scapula.

So what I'm trying to say is it is really hard to say which medicine is going to work. Despite my local doc's blunder with my latest scan report keytruda (merck's pd1) seems to have been the best for me. After 9 doses it is down to "only mild growth" and no new stuff. In my opinion that is fantastic .

So keytruda could do your husband good. There is also antibody drug conjugates at Sarah Cannon in Nashville. Also PDL is going on at places. There is Dr Rosenberg's tumor infiltrating lymphocytes (til) but from what I hear from Catherine Poole it is very toxic, requires someone in really good physical condition, is unproven. Then if you can there is also Bristol Myers phase 1 trials combining their PD1 (nivolumab) with various things like anti-kir and anti-lag-3 and maybe other things. Those other immunotherapies they are trying can be found out at their big 5 (university chicago, john hopkins in baltimore maryland, dana farber in boston, msk in ny, providence in portland oregon). One interesting thing is it seems like the anti-lag trial is primarily for those who progress on pd1 alone. I was supposed to go to Chicago yesterday but with my leg and hip not letting me walk I couldn't make it.

Artie

Emily,

Artie lists some good options.  You can see my treatment history in my profile, but high-level, I've done IL-2, TIL, and ipi, in addition to multiple surgeries and rounds of radiation.  To add my two cents…  based on the treatments your husband has done, I think anti-PD-1 would be far and away the best next step if needed, especially now that he's done both BRAF and ipi.  Whether it's using Merck's now approved Keytruda or using it (or BMS' nivolumab/Opdivo) in a trial setting in combination with another agent, PD-1 should be part of it.  I did read that the ADC trial at Sarah Cannon is closed and there aren't plans to reopened it or start any new trials — it's only listed as "active" for the patients who are already enrolled.  As far as TIL, yes, it can be far more toxic than the newer approved therapies, PD-1, ipi, BRAF/MEK, but to be clear, most of that toxicity is from the IL-2 portion of the treatment protocol, and your husband has already gone through IL-2, so you can assess how toxic it was for him.  The three primary locations with active TIL trials are NIH/NCI in Bethesda, Moffitt in Tampa, and MD Anderson in Houston.  But given the options today, again I would think PD-1 in some form is the likely next step.

Best, Joe

Emily,

Artie lists some good options.  You can see my treatment history in my profile, but high-level, I've done IL-2, TIL, and ipi, in addition to multiple surgeries and rounds of radiation.  To add my two cents…  based on the treatments your husband has done, I think anti-PD-1 would be far and away the best next step if needed, especially now that he's done both BRAF and ipi.  Whether it's using Merck's now approved Keytruda or using it (or BMS' nivolumab/Opdivo) in a trial setting in combination with another agent, PD-1 should be part of it.  I did read that the ADC trial at Sarah Cannon is closed and there aren't plans to reopened it or start any new trials — it's only listed as "active" for the patients who are already enrolled.  As far as TIL, yes, it can be far more toxic than the newer approved therapies, PD-1, ipi, BRAF/MEK, but to be clear, most of that toxicity is from the IL-2 portion of the treatment protocol, and your husband has already gone through IL-2, so you can assess how toxic it was for him.  The three primary locations with active TIL trials are NIH/NCI in Bethesda, Moffitt in Tampa, and MD Anderson in Houston.  But given the options today, again I would think PD-1 in some form is the likely next step.

Best, Joe

Emily,

Artie lists some good options.  You can see my treatment history in my profile, but high-level, I've done IL-2, TIL, and ipi, in addition to multiple surgeries and rounds of radiation.  To add my two cents…  based on the treatments your husband has done, I think anti-PD-1 would be far and away the best next step if needed, especially now that he's done both BRAF and ipi.  Whether it's using Merck's now approved Keytruda or using it (or BMS' nivolumab/Opdivo) in a trial setting in combination with another agent, PD-1 should be part of it.  I did read that the ADC trial at Sarah Cannon is closed and there aren't plans to reopened it or start any new trials — it's only listed as "active" for the patients who are already enrolled.  As far as TIL, yes, it can be far more toxic than the newer approved therapies, PD-1, ipi, BRAF/MEK, but to be clear, most of that toxicity is from the IL-2 portion of the treatment protocol, and your husband has already gone through IL-2, so you can assess how toxic it was for him.  The three primary locations with active TIL trials are NIH/NCI in Bethesda, Moffitt in Tampa, and MD Anderson in Houston.  But given the options today, again I would think PD-1 in some form is the likely next step.

Best, Joe