› Forums › General Melanoma Community › Ipi/nivo Following Other Treatments?
- This topic has 45 replies, 9 voices, and was last updated 9 years, 7 months ago by
jjw2014.
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- March 1, 2016 at 4:07 pm
I'm very encouraged to see the numerous posts by folks that have had success with ipi/nivo. After progressing on other standard treatments over time, I moved on to ipi/nivo in January. I have my third infusion this week (and have been fortunate to date with mild side effects). Here's my question–most folks that have done ipi/nivo did it without prior treatment. I believe that the clinical trials were only open to treatment naive. If correct, the (impressive) data and response rates from the trials are limited to treatment naive. Are there any folks that have done (or are doing) ipi/nivo following prior treatments and, if so, how are you doing? (I have not been scanned (other than routine brain MRI) since starting ipi/nivo.) Thanks.
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- March 1, 2016 at 6:59 pm
Hi Mat,
You can check my profile which I finally updated after a couple of years. I have done the whole nine-yards. After an initial year of surgical options, then declared unresectable, Stage IV, We followed the standard routine. BRAF positive so first Zelboraf which was very effective, but delivered devastating side-effects and ran its course in three short months. Then the TAF/MEK combo which at very best, kept me stable for nearly 6 months but progression persisted, I did a (personally decided) washout for several months thinking I may want a clinical trial, but ended up opting for the "standard of care" in Yervoy and breezed through the 4-dose regime with minimal side-effects, No response. Then Keytruda for about 6 doses but again, progression discovered in scans and insurance denied further treatment (fine, it was not working anyway). At that point in time, Ipi/Nivo was not yet FDA approved so I did a clinical trial of a very novel therapy IL-12 with Electroporation of tumor. Not fun…and without positive results. Luckily ipi/nivo was then FDA approved and my insurance covered this. Done with 4-dose combo and into about 5th dose of Opdivo only, also received radiation during this time but evidence suggests now that I'm still progressing and will confirm in two weeks. Still minimum side-effects. After that, there's no other FDA approved treatment so we are now looking at a couple of trials. Sorry for the long message but yes, there are others who have had the full standard of care treatment wise, done the ipi/nivo, and may or may not be responders.
Gary
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- March 1, 2016 at 6:59 pm
Hi Mat,
You can check my profile which I finally updated after a couple of years. I have done the whole nine-yards. After an initial year of surgical options, then declared unresectable, Stage IV, We followed the standard routine. BRAF positive so first Zelboraf which was very effective, but delivered devastating side-effects and ran its course in three short months. Then the TAF/MEK combo which at very best, kept me stable for nearly 6 months but progression persisted, I did a (personally decided) washout for several months thinking I may want a clinical trial, but ended up opting for the "standard of care" in Yervoy and breezed through the 4-dose regime with minimal side-effects, No response. Then Keytruda for about 6 doses but again, progression discovered in scans and insurance denied further treatment (fine, it was not working anyway). At that point in time, Ipi/Nivo was not yet FDA approved so I did a clinical trial of a very novel therapy IL-12 with Electroporation of tumor. Not fun…and without positive results. Luckily ipi/nivo was then FDA approved and my insurance covered this. Done with 4-dose combo and into about 5th dose of Opdivo only, also received radiation during this time but evidence suggests now that I'm still progressing and will confirm in two weeks. Still minimum side-effects. After that, there's no other FDA approved treatment so we are now looking at a couple of trials. Sorry for the long message but yes, there are others who have had the full standard of care treatment wise, done the ipi/nivo, and may or may not be responders.
Gary
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- April 18, 2016 at 10:22 pm
Hey Gary,
I hope your combo works well for you. I have a sister who's currently battling Melanoma stage IV. She's done IL2, had liver surgery, lung surgery and now going with the yervoy/opdivo combo. She lost her husband to melanoma two years ago so you can imagine how incredibly hard her life has been these past two years.
I am writing you to see what side effects you experienced for the first round of treatment. I'm well aware that each person has different side effects but wanted to see how soon yours kicked in. The more we know the more she will feel at ease as to what to possibly expect. I'm her primary caretaker and I too want to know as much as i can to help her cope.
Really appreciate your feedback.
Kind REgards,
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- April 18, 2016 at 10:22 pm
Hey Gary,
I hope your combo works well for you. I have a sister who's currently battling Melanoma stage IV. She's done IL2, had liver surgery, lung surgery and now going with the yervoy/opdivo combo. She lost her husband to melanoma two years ago so you can imagine how incredibly hard her life has been these past two years.
I am writing you to see what side effects you experienced for the first round of treatment. I'm well aware that each person has different side effects but wanted to see how soon yours kicked in. The more we know the more she will feel at ease as to what to possibly expect. I'm her primary caretaker and I too want to know as much as i can to help her cope.
Really appreciate your feedback.
Kind REgards,
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- April 18, 2016 at 10:22 pm
Hey Gary,
I hope your combo works well for you. I have a sister who's currently battling Melanoma stage IV. She's done IL2, had liver surgery, lung surgery and now going with the yervoy/opdivo combo. She lost her husband to melanoma two years ago so you can imagine how incredibly hard her life has been these past two years.
I am writing you to see what side effects you experienced for the first round of treatment. I'm well aware that each person has different side effects but wanted to see how soon yours kicked in. The more we know the more she will feel at ease as to what to possibly expect. I'm her primary caretaker and I too want to know as much as i can to help her cope.
Really appreciate your feedback.
Kind REgards,
-
- March 1, 2016 at 6:59 pm
Hi Mat,
You can check my profile which I finally updated after a couple of years. I have done the whole nine-yards. After an initial year of surgical options, then declared unresectable, Stage IV, We followed the standard routine. BRAF positive so first Zelboraf which was very effective, but delivered devastating side-effects and ran its course in three short months. Then the TAF/MEK combo which at very best, kept me stable for nearly 6 months but progression persisted, I did a (personally decided) washout for several months thinking I may want a clinical trial, but ended up opting for the "standard of care" in Yervoy and breezed through the 4-dose regime with minimal side-effects, No response. Then Keytruda for about 6 doses but again, progression discovered in scans and insurance denied further treatment (fine, it was not working anyway). At that point in time, Ipi/Nivo was not yet FDA approved so I did a clinical trial of a very novel therapy IL-12 with Electroporation of tumor. Not fun…and without positive results. Luckily ipi/nivo was then FDA approved and my insurance covered this. Done with 4-dose combo and into about 5th dose of Opdivo only, also received radiation during this time but evidence suggests now that I'm still progressing and will confirm in two weeks. Still minimum side-effects. After that, there's no other FDA approved treatment so we are now looking at a couple of trials. Sorry for the long message but yes, there are others who have had the full standard of care treatment wise, done the ipi/nivo, and may or may not be responders.
Gary
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- March 1, 2016 at 9:11 pm
Hi Matt. My husband is currenlty on ipi/nivo, and he has been on the treatment since Nov of last year. He had mets in his liver and right shoulder and after the 3rd infusion the tumors shrank and he had no evidence of disease.
About two years ago he was diagnosed with Stage 3 and did adjuvant bio-chemo and radiation therapy (please get second opinion if this is suggested because it didn't turn out well for my husand. he had nerve damage), after this treatment was in remission up to Oct of last year. We would have opted for Yervoy but since his insurance did not cover the treatment.
The current ipi/nivo treatment seems to be working for him, but he does have some bad side effects, such as rashes, headaches and extreme fatigue. His Onc recommends that he continue the nivo regiment only every two weeks. Now with this said we need clarity from the doctor how long he will have to continue the Nivo. We are just happy that he responded and I know sadly not everyone is as lucky.
Best of luck to you!
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- March 1, 2016 at 9:11 pm
Hi Matt. My husband is currenlty on ipi/nivo, and he has been on the treatment since Nov of last year. He had mets in his liver and right shoulder and after the 3rd infusion the tumors shrank and he had no evidence of disease.
About two years ago he was diagnosed with Stage 3 and did adjuvant bio-chemo and radiation therapy (please get second opinion if this is suggested because it didn't turn out well for my husand. he had nerve damage), after this treatment was in remission up to Oct of last year. We would have opted for Yervoy but since his insurance did not cover the treatment.
The current ipi/nivo treatment seems to be working for him, but he does have some bad side effects, such as rashes, headaches and extreme fatigue. His Onc recommends that he continue the nivo regiment only every two weeks. Now with this said we need clarity from the doctor how long he will have to continue the Nivo. We are just happy that he responded and I know sadly not everyone is as lucky.
Best of luck to you!
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- March 1, 2016 at 9:44 pm
I started the ipi/nivo combo in August. Prior treatments were 2 rounds of ipi, IL2, radiation to adrenal and femur). If anything the 2 rounds of ipi maybe slowed the growth down. I found a new met last July and the started the combo. I was scanned in November and all my mets shrank. Minimal side effects. Had another scan 2 weeks ago and continued shrinkage and the new met was gone. I'm getting the nivo every 2 weeks. My doctor and I discussed even getting a fourth round of ipi if I start to progress. It has been 3 years since diagnosis (stage 4 right off the bat), and I've learned that you just never know what will work. Everyone is different and you just have to keep fighting and try to keep one step ahead. Take care! Becky
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- March 1, 2016 at 9:44 pm
I started the ipi/nivo combo in August. Prior treatments were 2 rounds of ipi, IL2, radiation to adrenal and femur). If anything the 2 rounds of ipi maybe slowed the growth down. I found a new met last July and the started the combo. I was scanned in November and all my mets shrank. Minimal side effects. Had another scan 2 weeks ago and continued shrinkage and the new met was gone. I'm getting the nivo every 2 weeks. My doctor and I discussed even getting a fourth round of ipi if I start to progress. It has been 3 years since diagnosis (stage 4 right off the bat), and I've learned that you just never know what will work. Everyone is different and you just have to keep fighting and try to keep one step ahead. Take care! Becky
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- March 1, 2016 at 9:44 pm
I started the ipi/nivo combo in August. Prior treatments were 2 rounds of ipi, IL2, radiation to adrenal and femur). If anything the 2 rounds of ipi maybe slowed the growth down. I found a new met last July and the started the combo. I was scanned in November and all my mets shrank. Minimal side effects. Had another scan 2 weeks ago and continued shrinkage and the new met was gone. I'm getting the nivo every 2 weeks. My doctor and I discussed even getting a fourth round of ipi if I start to progress. It has been 3 years since diagnosis (stage 4 right off the bat), and I've learned that you just never know what will work. Everyone is different and you just have to keep fighting and try to keep one step ahead. Take care! Becky
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- April 18, 2016 at 10:30 pm
Hi Emi,
REading your reply made me so happy for you & your husband. I have a sister who's currently battling Melanoma stage IV. She's done IL2, had liver surgery, lung surgery and now going with the yervoy/opdivo combo. She lost her husband to melanoma two years ago so you can imagine how incredibly hard her life has been these past two years.
I am writing you to see what side effects your husband experienced for the first round of treatment. I'm well aware that each person has different side effects but wanted to see how soon his kicked in. (hours, day, week, next round, etc). The more we know the more she will feel at ease as to what to possibly expect. I'm her primary caretaker and I want to know as much as I can to help she and her boys deal with this afwul disease.
Really appreciate your feedback.
Kind REgards,
-
- April 18, 2016 at 10:30 pm
Hi Emi,
REading your reply made me so happy for you & your husband. I have a sister who's currently battling Melanoma stage IV. She's done IL2, had liver surgery, lung surgery and now going with the yervoy/opdivo combo. She lost her husband to melanoma two years ago so you can imagine how incredibly hard her life has been these past two years.
I am writing you to see what side effects your husband experienced for the first round of treatment. I'm well aware that each person has different side effects but wanted to see how soon his kicked in. (hours, day, week, next round, etc). The more we know the more she will feel at ease as to what to possibly expect. I'm her primary caretaker and I want to know as much as I can to help she and her boys deal with this afwul disease.
Really appreciate your feedback.
Kind REgards,
-
- April 18, 2016 at 10:30 pm
Hi Emi,
REading your reply made me so happy for you & your husband. I have a sister who's currently battling Melanoma stage IV. She's done IL2, had liver surgery, lung surgery and now going with the yervoy/opdivo combo. She lost her husband to melanoma two years ago so you can imagine how incredibly hard her life has been these past two years.
I am writing you to see what side effects your husband experienced for the first round of treatment. I'm well aware that each person has different side effects but wanted to see how soon his kicked in. (hours, day, week, next round, etc). The more we know the more she will feel at ease as to what to possibly expect. I'm her primary caretaker and I want to know as much as I can to help she and her boys deal with this afwul disease.
Really appreciate your feedback.
Kind REgards,
-
- March 1, 2016 at 9:11 pm
Hi Matt. My husband is currenlty on ipi/nivo, and he has been on the treatment since Nov of last year. He had mets in his liver and right shoulder and after the 3rd infusion the tumors shrank and he had no evidence of disease.
About two years ago he was diagnosed with Stage 3 and did adjuvant bio-chemo and radiation therapy (please get second opinion if this is suggested because it didn't turn out well for my husand. he had nerve damage), after this treatment was in remission up to Oct of last year. We would have opted for Yervoy but since his insurance did not cover the treatment.
The current ipi/nivo treatment seems to be working for him, but he does have some bad side effects, such as rashes, headaches and extreme fatigue. His Onc recommends that he continue the nivo regiment only every two weeks. Now with this said we need clarity from the doctor how long he will have to continue the Nivo. We are just happy that he responded and I know sadly not everyone is as lucky.
Best of luck to you!
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- March 2, 2016 at 5:53 pm
Hey Mat,
I haven't been able to see any data that analyzes the ipi/nivo data comparing treatment naive patients vs. non naive. I'm sure you've tried to find it as well. I'll keep my eyes open. When's your next scan? Do you have any gut feelings on how you are responding?
Brian
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- March 2, 2016 at 5:53 pm
Hey Mat,
I haven't been able to see any data that analyzes the ipi/nivo data comparing treatment naive patients vs. non naive. I'm sure you've tried to find it as well. I'll keep my eyes open. When's your next scan? Do you have any gut feelings on how you are responding?
Brian
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- March 2, 2016 at 5:53 pm
Hey Mat,
I haven't been able to see any data that analyzes the ipi/nivo data comparing treatment naive patients vs. non naive. I'm sure you've tried to find it as well. I'll keep my eyes open. When's your next scan? Do you have any gut feelings on how you are responding?
Brian
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- March 2, 2016 at 8:26 pm
Brian, thanks. We haven't settled on the scan schedule (other than brain MRI, where I follow an every 8 week schedule). Most patients on the combo wait until 12 weeks from start. I may do that as well, which will put me into early April. I don't have surface level subcuts–my melanoma prefers vital organs–so hard to say about responding. When I progressed in February 2015, I felt fine–so I don't tend to rely on gut feeling. Thanks again and will let folks know how I'm doing.
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- March 2, 2016 at 8:26 pm
Brian, thanks. We haven't settled on the scan schedule (other than brain MRI, where I follow an every 8 week schedule). Most patients on the combo wait until 12 weeks from start. I may do that as well, which will put me into early April. I don't have surface level subcuts–my melanoma prefers vital organs–so hard to say about responding. When I progressed in February 2015, I felt fine–so I don't tend to rely on gut feeling. Thanks again and will let folks know how I'm doing.
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- March 2, 2016 at 8:26 pm
Brian, thanks. We haven't settled on the scan schedule (other than brain MRI, where I follow an every 8 week schedule). Most patients on the combo wait until 12 weeks from start. I may do that as well, which will put me into early April. I don't have surface level subcuts–my melanoma prefers vital organs–so hard to say about responding. When I progressed in February 2015, I felt fine–so I don't tend to rely on gut feeling. Thanks again and will let folks know how I'm doing.
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- March 2, 2016 at 7:07 pm
Hey guys,
I so appreciate your struggle and admire your tenacity. I don't have any reports that give an outright answer to your question…How do folks who have endured many melanoma treatments fare when given the ipi/nivo combo vs those who use it as their first option? I am hoping some data will arise on this important topic at ASCO. However, existing data is clear that radiation WITH (or when closely proximate to) immunotherapy or BRAFi provides an enhanced response greater than with either treatment alone. Ratties have fully demonstrated that folks who first fail ipi….can indeed respond to anti-PD1 products….and vice versa. Here is an article noting that ipi or anti-PD1 after IL2 can provide a better response than IL2 alone: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-il2-followed-by-anti-pd1-good.html
Sooo….I guess my point is that we clearly have much to learn about melanoma and how it differs from person to person and how to gain a good response for all of us! BUT….it seems that sequential and combination therapies are certainly going to hold the key for many and you have every reason for hope!
Wishing my best for each of you! Celeste
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- March 2, 2016 at 7:07 pm
Hey guys,
I so appreciate your struggle and admire your tenacity. I don't have any reports that give an outright answer to your question…How do folks who have endured many melanoma treatments fare when given the ipi/nivo combo vs those who use it as their first option? I am hoping some data will arise on this important topic at ASCO. However, existing data is clear that radiation WITH (or when closely proximate to) immunotherapy or BRAFi provides an enhanced response greater than with either treatment alone. Ratties have fully demonstrated that folks who first fail ipi….can indeed respond to anti-PD1 products….and vice versa. Here is an article noting that ipi or anti-PD1 after IL2 can provide a better response than IL2 alone: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-il2-followed-by-anti-pd1-good.html
Sooo….I guess my point is that we clearly have much to learn about melanoma and how it differs from person to person and how to gain a good response for all of us! BUT….it seems that sequential and combination therapies are certainly going to hold the key for many and you have every reason for hope!
Wishing my best for each of you! Celeste
-
- March 2, 2016 at 7:07 pm
Hey guys,
I so appreciate your struggle and admire your tenacity. I don't have any reports that give an outright answer to your question…How do folks who have endured many melanoma treatments fare when given the ipi/nivo combo vs those who use it as their first option? I am hoping some data will arise on this important topic at ASCO. However, existing data is clear that radiation WITH (or when closely proximate to) immunotherapy or BRAFi provides an enhanced response greater than with either treatment alone. Ratties have fully demonstrated that folks who first fail ipi….can indeed respond to anti-PD1 products….and vice versa. Here is an article noting that ipi or anti-PD1 after IL2 can provide a better response than IL2 alone: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-il2-followed-by-anti-pd1-good.html
Sooo….I guess my point is that we clearly have much to learn about melanoma and how it differs from person to person and how to gain a good response for all of us! BUT….it seems that sequential and combination therapies are certainly going to hold the key for many and you have every reason for hope!
Wishing my best for each of you! Celeste
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- March 2, 2016 at 9:23 pm
Hi Mat,
Thanks for posing this question – it's one that I have been thinking about quite a bit lately! My husband is (hopefully) still responding to Keytruda (we should be getting scan results back in the next week or so), but we have the combo as a back up plan in case he progresses. I have been trying to find studies that look at response rates in patients that have received prior treatment, but haven't been successful. If I do find a relevant study I'll make sure to send it to you! Wishing you the best and a great response with the combo!
Best,
Katie
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- March 2, 2016 at 9:23 pm
Hi Mat,
Thanks for posing this question – it's one that I have been thinking about quite a bit lately! My husband is (hopefully) still responding to Keytruda (we should be getting scan results back in the next week or so), but we have the combo as a back up plan in case he progresses. I have been trying to find studies that look at response rates in patients that have received prior treatment, but haven't been successful. If I do find a relevant study I'll make sure to send it to you! Wishing you the best and a great response with the combo!
Best,
Katie
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- March 2, 2016 at 9:23 pm
Hi Mat,
Thanks for posing this question – it's one that I have been thinking about quite a bit lately! My husband is (hopefully) still responding to Keytruda (we should be getting scan results back in the next week or so), but we have the combo as a back up plan in case he progresses. I have been trying to find studies that look at response rates in patients that have received prior treatment, but haven't been successful. If I do find a relevant study I'll make sure to send it to you! Wishing you the best and a great response with the combo!
Best,
Katie
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- March 5, 2016 at 12:04 am
I failed Pembro and I am now doing IPi/Nivo concrrently with radiation for bone mets.
Hoping it might work for me but i was told by my Professor who is a leading researcher that becaue i had failed pembro that my chances with Ipi/Nivo werre only about 10-15 pecent of repsonse which i must say is pretty depressing espeially considering what i have to go through.
Has anyone heard about those sort of stats?
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- March 5, 2016 at 12:04 am
I failed Pembro and I am now doing IPi/Nivo concrrently with radiation for bone mets.
Hoping it might work for me but i was told by my Professor who is a leading researcher that becaue i had failed pembro that my chances with Ipi/Nivo werre only about 10-15 pecent of repsonse which i must say is pretty depressing espeially considering what i have to go through.
Has anyone heard about those sort of stats?
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- March 5, 2016 at 5:19 am
For what it's worth, I don't think that those are reliable stats. He/she is basically giving you the stats for ipi alone. I've asked the same question of several leading melanoma specialists, including those involved in the ipi-nivolumab trials, and there is no data for treatment refractory (previously treated) patients. Our experiences will be the initial anecdotal data.
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- March 5, 2016 at 5:19 am
For what it's worth, I don't think that those are reliable stats. He/she is basically giving you the stats for ipi alone. I've asked the same question of several leading melanoma specialists, including those involved in the ipi-nivolumab trials, and there is no data for treatment refractory (previously treated) patients. Our experiences will be the initial anecdotal data.
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- March 5, 2016 at 5:19 am
For what it's worth, I don't think that those are reliable stats. He/she is basically giving you the stats for ipi alone. I've asked the same question of several leading melanoma specialists, including those involved in the ipi-nivolumab trials, and there is no data for treatment refractory (previously treated) patients. Our experiences will be the initial anecdotal data.
-
- March 5, 2016 at 12:04 am
I failed Pembro and I am now doing IPi/Nivo concrrently with radiation for bone mets.
Hoping it might work for me but i was told by my Professor who is a leading researcher that becaue i had failed pembro that my chances with Ipi/Nivo werre only about 10-15 pecent of repsonse which i must say is pretty depressing espeially considering what i have to go through.
Has anyone heard about those sort of stats?
-
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