Adoptive cell therapy treatment only when all else fails?

I think that the most reasonable thing to do is to seek a second or even third opinion from melanoma experts, especially from someone with experience of adoptive cell therapy.

Just one question from me: Is there any way that you could get anti PD1 rather than BRAF/MEK at this stage? It would make sense to try immunotherapy first since there is a chance to have a durable response even off the drug, which has not yet been proven with BRAF/MEK. From what I have read, prior immunotherapy might also increase the effect of adoptive cell therapy. Please just take this as a question to ask the doctor since I am not a doctor.

I think that the most reasonable thing to do is to seek a second or even third opinion from melanoma experts, especially from someone with experience of adoptive cell therapy.

Just one question from me: Is there any way that you could get anti PD1 rather than BRAF/MEK at this stage? It would make sense to try immunotherapy first since there is a chance to have a durable response even off the drug, which has not yet been proven with BRAF/MEK. From what I have read, prior immunotherapy might also increase the effect of adoptive cell therapy. Please just take this as a question to ask the doctor since I am not a doctor.

I think that the most reasonable thing to do is to seek a second or even third opinion from melanoma experts, especially from someone with experience of adoptive cell therapy.

Just one question from me: Is there any way that you could get anti PD1 rather than BRAF/MEK at this stage? It would make sense to try immunotherapy first since there is a chance to have a durable response even off the drug, which has not yet been proven with BRAF/MEK. From what I have read, prior immunotherapy might also increase the effect of adoptive cell therapy. Please just take this as a question to ask the doctor since I am not a doctor.

No. Some people on here did it as their first treatment. However the success rate is rather skewed from what I was told. They basically claim it is a 50/50 response rate. They cherry pick their patients they accept among other things. However that being said if a person is strong and healthy I would think it is a viable option. Those of us that have been battered by treatments and disease for so long and are no longer very healthy probably should stay away from it because a number of people don't make it back from the drop to zero white blood cell part and if they do they don't recover from the rest of the treatment. Thus being healthy and strong going into it is very important and you can do it fine. Thus doing it earlier instead of later seems better to me.

to skip the braf pills and go straight to pd1 requires a trial. The fda requires us braf positive folks to fail it before we can get the fda approved pd1. Maybe that will change. Also don't count out the miracle of pd1. For me 19 out of 30 tumors were shrinking after only 3 doses. 7 were growing. Those all started as bone tumors too. I had failed with nothing shrinking both brafs and ipi. Second scan showed some tumors had mild growth. Soon to have third scan.

I also wanted to make sure your doc has offered xgeva or zometa for your bones especially the spine.

but yeah if you are strong and healthy enough I would do it now rather than later.

Artie

No. Some people on here did it as their first treatment. However the success rate is rather skewed from what I was told. They basically claim it is a 50/50 response rate. They cherry pick their patients they accept among other things. However that being said if a person is strong and healthy I would think it is a viable option. Those of us that have been battered by treatments and disease for so long and are no longer very healthy probably should stay away from it because a number of people don't make it back from the drop to zero white blood cell part and if they do they don't recover from the rest of the treatment. Thus being healthy and strong going into it is very important and you can do it fine. Thus doing it earlier instead of later seems better to me.

to skip the braf pills and go straight to pd1 requires a trial. The fda requires us braf positive folks to fail it before we can get the fda approved pd1. Maybe that will change. Also don't count out the miracle of pd1. For me 19 out of 30 tumors were shrinking after only 3 doses. 7 were growing. Those all started as bone tumors too. I had failed with nothing shrinking both brafs and ipi. Second scan showed some tumors had mild growth. Soon to have third scan.

I also wanted to make sure your doc has offered xgeva or zometa for your bones especially the spine.

but yeah if you are strong and healthy enough I would do it now rather than later.

Artie

No. Some people on here did it as their first treatment. However the success rate is rather skewed from what I was told. They basically claim it is a 50/50 response rate. They cherry pick their patients they accept among other things. However that being said if a person is strong and healthy I would think it is a viable option. Those of us that have been battered by treatments and disease for so long and are no longer very healthy probably should stay away from it because a number of people don't make it back from the drop to zero white blood cell part and if they do they don't recover from the rest of the treatment. Thus being healthy and strong going into it is very important and you can do it fine. Thus doing it earlier instead of later seems better to me.

to skip the braf pills and go straight to pd1 requires a trial. The fda requires us braf positive folks to fail it before we can get the fda approved pd1. Maybe that will change. Also don't count out the miracle of pd1. For me 19 out of 30 tumors were shrinking after only 3 doses. 7 were growing. Those all started as bone tumors too. I had failed with nothing shrinking both brafs and ipi. Second scan showed some tumors had mild growth. Soon to have third scan.

I also wanted to make sure your doc has offered xgeva or zometa for your bones especially the spine.

but yeah if you are strong and healthy enough I would do it now rather than later.

Artie

Under Current FDA approvaal, if one is BRAF V600E/K+ then  one has to have anti-BRAF- targeted chemo and fail it to get to Yervoy  (anti-CTLA-4 immunmotherapy)  to fail it to get to one of the milder, but more efective Anti-PD-1 immunotherapy treatments. 

     When I reached Stage IV, many oncolgists (that were not trained to administer IL-2) were telling people to hold off on IL-2 until the last treatment possible.  I talked to many surviving spouses and was told that their deceased spouse had tried to hold it to the last and then failed to recover from the previous treatments in time to try the IL-2.   Since I was at my stongest point, I jumped on the iL-2 as my first treatment in 2007, hoping to one of the 5-8% that are actually CURED by the IL-2.  I was not a complete responder {by technnical definitions, I was a non-responder since even a partial responder has to have at least a 30% reduction in tumor load}.  All that I got was for my wildly growiing, agresssive tumor load to stabilize for two years.  During that time I also learned that many other treatments were more effective following the immune systems enhancment from the IL-2 immunotherapy .  If I had not tried this so called (by a few) deadly treatment I would not be alive today.

   I would love to see a breakdown of the ACT/TIL results based on the timimg of the treatments.  Early, late, etc.   Under todays FDA approvals the anti-PD-1 trtment are a third line treatmment (following anti-BRAF and anti-CTLA-4)  What would the results be if Anati-PD-1 was firsst  line, IL-2 was second line and TIL/ACT was the third  line?  Wonder if we will learn  during my lifetime!

  IS there a choice to really try ACT/TIL as other than a far down the line treatment?  Why don't more people start the  TIL/ACT by having the harvest of the TIL's done and then go on to one of the other treatments,  (AS though we have a progressive treatment path choice!)  One can then go back after the TIL's are grown and been preserved, if the other t retment have failed and continue on the TIL treatment.  Just  my musings on the subject.

Under Current FDA approvaal, if one is BRAF V600E/K+ then  one has to have anti-BRAF- targeted chemo and fail it to get to Yervoy  (anti-CTLA-4 immunmotherapy)  to fail it to get to one of the milder, but more efective Anti-PD-1 immunotherapy treatments. 

     When I reached Stage IV, many oncolgists (that were not trained to administer IL-2) were telling people to hold off on IL-2 until the last treatment possible.  I talked to many surviving spouses and was told that their deceased spouse had tried to hold it to the last and then failed to recover from the previous treatments in time to try the IL-2.   Since I was at my stongest point, I jumped on the iL-2 as my first treatment in 2007, hoping to one of the 5-8% that are actually CURED by the IL-2.  I was not a complete responder {by technnical definitions, I was a non-responder since even a partial responder has to have at least a 30% reduction in tumor load}.  All that I got was for my wildly growiing, agresssive tumor load to stabilize for two years.  During that time I also learned that many other treatments were more effective following the immune systems enhancment from the IL-2 immunotherapy .  If I had not tried this so called (by a few) deadly treatment I would not be alive today.

   I would love to see a breakdown of the ACT/TIL results based on the timimg of the treatments.  Early, late, etc.   Under todays FDA approvals the anti-PD-1 trtment are a third line treatmment (following anti-BRAF and anti-CTLA-4)  What would the results be if Anati-PD-1 was firsst  line, IL-2 was second line and TIL/ACT was the third  line?  Wonder if we will learn  during my lifetime!

  IS there a choice to really try ACT/TIL as other than a far down the line treatment?  Why don't more people start the  TIL/ACT by having the harvest of the TIL's done and then go on to one of the other treatments,  (AS though we have a progressive treatment path choice!)  One can then go back after the TIL's are grown and been preserved, if the other t retment have failed and continue on the TIL treatment.  Just  my musings on the subject.

Under Current FDA approvaal, if one is BRAF V600E/K+ then  one has to have anti-BRAF- targeted chemo and fail it to get to Yervoy  (anti-CTLA-4 immunmotherapy)  to fail it to get to one of the milder, but more efective Anti-PD-1 immunotherapy treatments. 

     When I reached Stage IV, many oncolgists (that were not trained to administer IL-2) were telling people to hold off on IL-2 until the last treatment possible.  I talked to many surviving spouses and was told that their deceased spouse had tried to hold it to the last and then failed to recover from the previous treatments in time to try the IL-2.   Since I was at my stongest point, I jumped on the iL-2 as my first treatment in 2007, hoping to one of the 5-8% that are actually CURED by the IL-2.  I was not a complete responder {by technnical definitions, I was a non-responder since even a partial responder has to have at least a 30% reduction in tumor load}.  All that I got was for my wildly growiing, agresssive tumor load to stabilize for two years.  During that time I also learned that many other treatments were more effective following the immune systems enhancment from the IL-2 immunotherapy .  If I had not tried this so called (by a few) deadly treatment I would not be alive today.

   I would love to see a breakdown of the ACT/TIL results based on the timimg of the treatments.  Early, late, etc.   Under todays FDA approvals the anti-PD-1 trtment are a third line treatmment (following anti-BRAF and anti-CTLA-4)  What would the results be if Anati-PD-1 was firsst  line, IL-2 was second line and TIL/ACT was the third  line?  Wonder if we will learn  during my lifetime!

  IS there a choice to really try ACT/TIL as other than a far down the line treatment?  Why don't more people start the  TIL/ACT by having the harvest of the TIL's done and then go on to one of the other treatments,  (AS though we have a progressive treatment path choice!)  One can then go back after the TIL's are grown and been preserved, if the other t retment have failed and continue on the TIL treatment.  Just  my musings on the subject.

Dear Banders, my advice on Adoptive Therapy is talk to the best in the field. My understanding is Patwick Hwu M.D. at MD Anderson in Houston, Texas is the person to talk to. He is one of the leading Dr. in this field and I would think the best place to go for information and stat. Wishing you the best!!!! Ed

Dear Banders, my advice on Adoptive Therapy is talk to the best in the field. My understanding is Patwick Hwu M.D. at MD Anderson in Houston, Texas is the person to talk to. He is one of the leading Dr. in this field and I would think the best place to go for information and stat. Wishing you the best!!!! Ed

Dear Banders, my advice on Adoptive Therapy is talk to the best in the field. My understanding is Patwick Hwu M.D. at MD Anderson in Houston, Texas is the person to talk to. He is one of the leading Dr. in this field and I would think the best place to go for information and stat. Wishing you the best!!!! Ed