PD-1 response time questions

Sandy

it is great question! My son had the four infusions of ipilimulab. He is stage 3C. After finishing the treatment cycle, he had anither surgery of the lymph nodes because they found melanoma cells. We were concerned about being pulled off the trial. The oncologist initially thought he will be asked to end the trial, but later on they said that even with having the surgery -and radiation if necessary- my son could continue in trial and receive the maintainance dose of ipilimulab every 12 weeks x 4 times. When i asked the oncologist what was the rational behind the decision, he said that with immunotherapy the immune system in some cases takes longer to respond than with other treatments.

hope this helps

M

Sandy

it is great question! My son had the four infusions of ipilimulab. He is stage 3C. After finishing the treatment cycle, he had anither surgery of the lymph nodes because they found melanoma cells. We were concerned about being pulled off the trial. The oncologist initially thought he will be asked to end the trial, but later on they said that even with having the surgery -and radiation if necessary- my son could continue in trial and receive the maintainance dose of ipilimulab every 12 weeks x 4 times. When i asked the oncologist what was the rational behind the decision, he said that with immunotherapy the immune system in some cases takes longer to respond than with other treatments.

hope this helps

M

Sandy

it is great question! My son had the four infusions of ipilimulab. He is stage 3C. After finishing the treatment cycle, he had anither surgery of the lymph nodes because they found melanoma cells. We were concerned about being pulled off the trial. The oncologist initially thought he will be asked to end the trial, but later on they said that even with having the surgery -and radiation if necessary- my son could continue in trial and receive the maintainance dose of ipilimulab every 12 weeks x 4 times. When i asked the oncologist what was the rational behind the decision, he said that with immunotherapy the immune system in some cases takes longer to respond than with other treatments.

hope this helps

M

I think it was right before dose 4 of keytruda they did the scan at mayo. It showed about 19 tumors shrinking, 4 staying the same and 7 growing and no new stuff. the doc was really worried it wasn't working good enough so I was to have radiation to 3 of the tumors and 2 more doses then scan. The radiation was locally so I was too wiped out to go back to mayo and at that time it became fda approved. Right before dose 9 once they got the scans right it showed no new stuff and only mild growth. The local scan report is no where as detailed as mayo so I really don't know what the tumor status is except they mentioned the size of my largest tumor. My local doc still wants me to get into the til trial or some other trial. But since my leg went out that excludes me from it. I see my radiation doc tuesday about that. I got dose 10 last tuesday.

Artie

I think it was right before dose 4 of keytruda they did the scan at mayo. It showed about 19 tumors shrinking, 4 staying the same and 7 growing and no new stuff. the doc was really worried it wasn't working good enough so I was to have radiation to 3 of the tumors and 2 more doses then scan. The radiation was locally so I was too wiped out to go back to mayo and at that time it became fda approved. Right before dose 9 once they got the scans right it showed no new stuff and only mild growth. The local scan report is no where as detailed as mayo so I really don't know what the tumor status is except they mentioned the size of my largest tumor. My local doc still wants me to get into the til trial or some other trial. But since my leg went out that excludes me from it. I see my radiation doc tuesday about that. I got dose 10 last tuesday.

Artie

I think it was right before dose 4 of keytruda they did the scan at mayo. It showed about 19 tumors shrinking, 4 staying the same and 7 growing and no new stuff. the doc was really worried it wasn't working good enough so I was to have radiation to 3 of the tumors and 2 more doses then scan. The radiation was locally so I was too wiped out to go back to mayo and at that time it became fda approved. Right before dose 9 once they got the scans right it showed no new stuff and only mild growth. The local scan report is no where as detailed as mayo so I really don't know what the tumor status is except they mentioned the size of my largest tumor. My local doc still wants me to get into the til trial or some other trial. But since my leg went out that excludes me from it. I see my radiation doc tuesday about that. I got dose 10 last tuesday.

Artie

Your husband is correct.  We have learned a great deal over the relatively short time in which immunotherapies have been used. It is now accepted fact that mmunotherapies take time for a response and an enlargement (initially deemed to be progression) can occur before tumors shrink.  I started Nivolumab in 2010 as part of a 2 1/2 year trial.  I was in the very first cohort.  Very early on a patient "progressed" and was removed from the trial.  However….here is the report on him from Sept 2012: 

"OUTCOMES at this point in my cohort:  So far, it seems, as I reported in June, two patients died early on in the trial.  One of the deaths was subsequent to brain mets that had not been noted when they entered the trial and I am not certain of the cause of death in the second. In total, 6 patients out of the 29, have progressed. One, whom I've mentioned before, experienced spontaneous regression while being watched to determine treatment, and continues to remain stable with NO ADDITIONAL TREATMENT given as yet.  The other 5 are reported to be doing well on regimens of ipi (now yervoy) or BRAF inhibitors. The remaining 21 of us….carry on."

Here is some data out of ASCO, June 2014, addressing many  MK-3475 (Pembro/Ketruda) issues…the first being delayed response in some patients:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/mk-3475-mercks-anti-pd1-for.html

And there's this…  "…Patience…[in monitoring clinical benefit] is required when using immunotherapies.  Early in the course of treatment, lesions may grow and become symptomatic, which is a pattern seen in systemic melanoma lesions treated with ipi, even though significant clinical response will ultimately occur.  In general, we attempt to wait until the end of the induction phase of ipi before concluding the presence of progressive disease."    From:  Novel Treatments for Melanoma Brain Metastases
Kenchappa, Tran, Rao, Smalley, Gibney, Sondak, and Forsyth. October 2013.  Cancer Control

At this point, there are many patients with lung "nodules" that have come and gone during their course of anti-PD1 or anti-PD1/ipi trials who have been allowed to remain (clearly as was not the case when my trial started) and sure enough…their lesions have waxed and waned.  The jury remains out on an absolute answer, but there are many issues to consider…merely inflammatory response (as in a mild pneumonitis), inflammation of an actual tumor prior to its demise, or true tumor progression.  Most melanoma specialists have adjusted their protocols (including the one I was on and am followed by at Moffitt) to allow for some "growth" before categorizing the situation as progression.

Hope that helps.  C

Your husband is correct.  We have learned a great deal over the relatively short time in which immunotherapies have been used. It is now accepted fact that mmunotherapies take time for a response and an enlargement (initially deemed to be progression) can occur before tumors shrink.  I started Nivolumab in 2010 as part of a 2 1/2 year trial.  I was in the very first cohort.  Very early on a patient "progressed" and was removed from the trial.  However….here is the report on him from Sept 2012: 

"OUTCOMES at this point in my cohort:  So far, it seems, as I reported in June, two patients died early on in the trial.  One of the deaths was subsequent to brain mets that had not been noted when they entered the trial and I am not certain of the cause of death in the second. In total, 6 patients out of the 29, have progressed. One, whom I've mentioned before, experienced spontaneous regression while being watched to determine treatment, and continues to remain stable with NO ADDITIONAL TREATMENT given as yet.  The other 5 are reported to be doing well on regimens of ipi (now yervoy) or BRAF inhibitors. The remaining 21 of us….carry on."

Here is some data out of ASCO, June 2014, addressing many  MK-3475 (Pembro/Ketruda) issues…the first being delayed response in some patients:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/mk-3475-mercks-anti-pd1-for.html

And there's this…  "…Patience…[in monitoring clinical benefit] is required when using immunotherapies.  Early in the course of treatment, lesions may grow and become symptomatic, which is a pattern seen in systemic melanoma lesions treated with ipi, even though significant clinical response will ultimately occur.  In general, we attempt to wait until the end of the induction phase of ipi before concluding the presence of progressive disease."    From:  Novel Treatments for Melanoma Brain Metastases
Kenchappa, Tran, Rao, Smalley, Gibney, Sondak, and Forsyth. October 2013.  Cancer Control

At this point, there are many patients with lung "nodules" that have come and gone during their course of anti-PD1 or anti-PD1/ipi trials who have been allowed to remain (clearly as was not the case when my trial started) and sure enough…their lesions have waxed and waned.  The jury remains out on an absolute answer, but there are many issues to consider…merely inflammatory response (as in a mild pneumonitis), inflammation of an actual tumor prior to its demise, or true tumor progression.  Most melanoma specialists have adjusted their protocols (including the one I was on and am followed by at Moffitt) to allow for some "growth" before categorizing the situation as progression.

Hope that helps.  C

Your husband is correct.  We have learned a great deal over the relatively short time in which immunotherapies have been used. It is now accepted fact that mmunotherapies take time for a response and an enlargement (initially deemed to be progression) can occur before tumors shrink.  I started Nivolumab in 2010 as part of a 2 1/2 year trial.  I was in the very first cohort.  Very early on a patient "progressed" and was removed from the trial.  However….here is the report on him from Sept 2012: 

"OUTCOMES at this point in my cohort:  So far, it seems, as I reported in June, two patients died early on in the trial.  One of the deaths was subsequent to brain mets that had not been noted when they entered the trial and I am not certain of the cause of death in the second. In total, 6 patients out of the 29, have progressed. One, whom I've mentioned before, experienced spontaneous regression while being watched to determine treatment, and continues to remain stable with NO ADDITIONAL TREATMENT given as yet.  The other 5 are reported to be doing well on regimens of ipi (now yervoy) or BRAF inhibitors. The remaining 21 of us….carry on."

Here is some data out of ASCO, June 2014, addressing many  MK-3475 (Pembro/Ketruda) issues…the first being delayed response in some patients:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/mk-3475-mercks-anti-pd1-for.html

And there's this…  "…Patience…[in monitoring clinical benefit] is required when using immunotherapies.  Early in the course of treatment, lesions may grow and become symptomatic, which is a pattern seen in systemic melanoma lesions treated with ipi, even though significant clinical response will ultimately occur.  In general, we attempt to wait until the end of the induction phase of ipi before concluding the presence of progressive disease."    From:  Novel Treatments for Melanoma Brain Metastases
Kenchappa, Tran, Rao, Smalley, Gibney, Sondak, and Forsyth. October 2013.  Cancer Control

At this point, there are many patients with lung "nodules" that have come and gone during their course of anti-PD1 or anti-PD1/ipi trials who have been allowed to remain (clearly as was not the case when my trial started) and sure enough…their lesions have waxed and waned.  The jury remains out on an absolute answer, but there are many issues to consider…merely inflammatory response (as in a mild pneumonitis), inflammation of an actual tumor prior to its demise, or true tumor progression.  Most melanoma specialists have adjusted their protocols (including the one I was on and am followed by at Moffitt) to allow for some "growth" before categorizing the situation as progression.

Hope that helps.  C

One other note to add to the excellent replies above. My oncologist has mentioned to me more than once that more and more he has patients who have what might be described as a discouraging scan that perhaps even looks like progression and growing lesions, but they also say they feel much better physically, and later on, these patients often are the ones who have a delayed good response on scans. This is far from absolute and not to suggest that treatment decisions should be based solely on how we feel, but more often, it's something that shouldn't be discounted either — make sure it's part of the discussion with your oncologist, no one knows our bodies better than ourselves.

Best, Joe

One other note to add to the excellent replies above. My oncologist has mentioned to me more than once that more and more he has patients who have what might be described as a discouraging scan that perhaps even looks like progression and growing lesions, but they also say they feel much better physically, and later on, these patients often are the ones who have a delayed good response on scans. This is far from absolute and not to suggest that treatment decisions should be based solely on how we feel, but more often, it's something that shouldn't be discounted either — make sure it's part of the discussion with your oncologist, no one knows our bodies better than ourselves.

Best, Joe

One other note to add to the excellent replies above. My oncologist has mentioned to me more than once that more and more he has patients who have what might be described as a discouraging scan that perhaps even looks like progression and growing lesions, but they also say they feel much better physically, and later on, these patients often are the ones who have a delayed good response on scans. This is far from absolute and not to suggest that treatment decisions should be based solely on how we feel, but more often, it's something that shouldn't be discounted either — make sure it's part of the discussion with your oncologist, no one knows our bodies better than ourselves.

Best, Joe

I too had to stop the treatment after 9 weeks when the scan showed a very tiny progression of my tumor. I was in a studio with two arms nivo/dacarbazine so My oncologist thought I got dacarbazine, otherwise perhaps I could go on with the trial. I got ipi instead but after only one dose I got severe sideffects and had to stop that too. Now I know that I got nivo at the trial. I can't have any immunotherapie now which is frustrating, all new therapies involve immunotherapie. I which I had continued the trial. 

inger

I too had to stop the treatment after 9 weeks when the scan showed a very tiny progression of my tumor. I was in a studio with two arms nivo/dacarbazine so My oncologist thought I got dacarbazine, otherwise perhaps I could go on with the trial. I got ipi instead but after only one dose I got severe sideffects and had to stop that too. Now I know that I got nivo at the trial. I can't have any immunotherapie now which is frustrating, all new therapies involve immunotherapie. I which I had continued the trial. 

inger

I too had to stop the treatment after 9 weeks when the scan showed a very tiny progression of my tumor. I was in a studio with two arms nivo/dacarbazine so My oncologist thought I got dacarbazine, otherwise perhaps I could go on with the trial. I got ipi instead but after only one dose I got severe sideffects and had to stop that too. Now I know that I got nivo at the trial. I can't have any immunotherapie now which is frustrating, all new therapies involve immunotherapie. I which I had continued the trial. 

inger

Not too long ago, I did a web search on pseudo-progression of melanoma and came across a PowerPoint presentation with a graph showing the very, very different response times of people on MK-3475/Keytruda. Some people responded by the third infusion and some were months down the line. The point being made was that doctors cannot throw in the towel too soon. (This may well have been the same graph your husband found.)

That said, I'd be concerned that your oncologist doesn't know this, as it's not new information. If he's not willing to put you back on the treatment (and perhaps even if he is), have you considered looking for another doctor who is better versed in melanoma treatment?

Not too long ago, I did a web search on pseudo-progression of melanoma and came across a PowerPoint presentation with a graph showing the very, very different response times of people on MK-3475/Keytruda. Some people responded by the third infusion and some were months down the line. The point being made was that doctors cannot throw in the towel too soon. (This may well have been the same graph your husband found.)

That said, I'd be concerned that your oncologist doesn't know this, as it's not new information. If he's not willing to put you back on the treatment (and perhaps even if he is), have you considered looking for another doctor who is better versed in melanoma treatment?

Not too long ago, I did a web search on pseudo-progression of melanoma and came across a PowerPoint presentation with a graph showing the very, very different response times of people on MK-3475/Keytruda. Some people responded by the third infusion and some were months down the line. The point being made was that doctors cannot throw in the towel too soon. (This may well have been the same graph your husband found.)

That said, I'd be concerned that your oncologist doesn't know this, as it's not new information. If he's not willing to put you back on the treatment (and perhaps even if he is), have you considered looking for another doctor who is better versed in melanoma treatment?

I agree with all these wonderful answers. I have had four infusions and due for the fifth on Monday. I am stage 4 lung Mets and after 2 infusions I started to feel better. I know my dr watches me for that each time he sees me and said I had a new spring in my step after the 2nd infusion. Before that I was coughing day and night and on morphine cough suppressant and looking at palliative care to help with that. Now I only cough morning and night. After three infusions he did a ct scan and the large tumor in my lung was same size (6.9 cm )but different shape and the tumours  in my nodes had shrunk. However he is not even planning the first pet scan till January, so that will be after infusion 7! I hope it works as well for you if you get back on.

I agree with all these wonderful answers. I have had four infusions and due for the fifth on Monday. I am stage 4 lung Mets and after 2 infusions I started to feel better. I know my dr watches me for that each time he sees me and said I had a new spring in my step after the 2nd infusion. Before that I was coughing day and night and on morphine cough suppressant and looking at palliative care to help with that. Now I only cough morning and night. After three infusions he did a ct scan and the large tumor in my lung was same size (6.9 cm )but different shape and the tumours  in my nodes had shrunk. However he is not even planning the first pet scan till January, so that will be after infusion 7! I hope it works as well for you if you get back on.

I agree with all these wonderful answers. I have had four infusions and due for the fifth on Monday. I am stage 4 lung Mets and after 2 infusions I started to feel better. I know my dr watches me for that each time he sees me and said I had a new spring in my step after the 2nd infusion. Before that I was coughing day and night and on morphine cough suppressant and looking at palliative care to help with that. Now I only cough morning and night. After three infusions he did a ct scan and the large tumor in my lung was same size (6.9 cm )but different shape and the tumours  in my nodes had shrunk. However he is not even planning the first pet scan till January, so that will be after infusion 7! I hope it works as well for you if you get back on.

Hi everyone,

Several posters here mention "time to respond" articles or graphs for Yervoy and PD1 (Opdivo or Keytruda), would anyone be able to share a link?

Many thanks,

Rick

Hi everyone,

Several posters here mention "time to respond" articles or graphs for Yervoy and PD1 (Opdivo or Keytruda), would anyone be able to share a link?

Many thanks,

Rick

Hi everyone,

Several posters here mention "time to respond" articles or graphs for Yervoy and PD1 (Opdivo or Keytruda), would anyone be able to share a link?

Many thanks,

Rick