› Forums › General Melanoma Community › Immunotherapy Options
- This topic has 33 replies, 7 voices, and was last updated 7 years, 4 months ago by
KAF.
- Post
-
- November 28, 2016 at 3:29 pm
Hello,
I was having success with the BRAK/MEK combination I was on for the past year and a half. However, on my last scan it showed tumour growth of the single tumour I have on my pancreas. I am in Canada.
My oncologist has now given me 2 options:
1) Clincial trial with Nivolumab + Ipilimumba
2) Nivolumab on its own
Initially I chose to go with the clinical trial as the response rates seem to be higher. However the adverse events for this combo seem extreme and there's a high likelihood that I won't even make it through the first 4 doses due to it's toxicity. Depending on what happens it could actually prevent me from continuing beyond the 4 weeks on Nivolumab alone.
I question whether or not I should just try Nivolumab on it's own to try to avoid these complications.
Any thoguhts out there? I have read some pretty amazing success stories with these drugs, yet I have also read some horror stories of side effects.
Thanks
Mark
- Replies
-
-
- November 28, 2016 at 4:33 pm
Hi Mark, some things to think about. 1) about 50% patients taking combination, will have grade 3 or 4 adverse advents about 30% will not be able to continue with more ipi, some will be able to go on with Nivo. Another thing to think about is response to Pd-1 or not, in Ontario you can't get ipi as a second drug only Pembro(stage 4) then I believe chemo would be second line drug. $$$$ is the reason as I understand it. Best wishes in making a decision!!!!Ed
-
- November 28, 2016 at 4:33 pm
Hi Mark, some things to think about. 1) about 50% patients taking combination, will have grade 3 or 4 adverse advents about 30% will not be able to continue with more ipi, some will be able to go on with Nivo. Another thing to think about is response to Pd-1 or not, in Ontario you can't get ipi as a second drug only Pembro(stage 4) then I believe chemo would be second line drug. $$$$ is the reason as I understand it. Best wishes in making a decision!!!!Ed
-
- November 28, 2016 at 4:33 pm
Hi Mark, some things to think about. 1) about 50% patients taking combination, will have grade 3 or 4 adverse advents about 30% will not be able to continue with more ipi, some will be able to go on with Nivo. Another thing to think about is response to Pd-1 or not, in Ontario you can't get ipi as a second drug only Pembro(stage 4) then I believe chemo would be second line drug. $$$$ is the reason as I understand it. Best wishes in making a decision!!!!Ed
-
- November 28, 2016 at 5:00 pm
Hi Ed. I was mistaken. My second option is not Nivolumab. It would be Pembro as a single agent. This decision feels like a roll of the dice.
-
- November 28, 2016 at 5:00 pm
Hi Ed. I was mistaken. My second option is not Nivolumab. It would be Pembro as a single agent. This decision feels like a roll of the dice.
-
- November 28, 2016 at 5:00 pm
Hi Ed. I was mistaken. My second option is not Nivolumab. It would be Pembro as a single agent. This decision feels like a roll of the dice.
-
- November 28, 2016 at 5:00 pm
Hi Ed. I was mistaken. My second option is not Nivolumab. It would be Pembro as a single agent. This decision feels like a roll of the dice.
-
- November 28, 2016 at 5:00 pm
Hi Ed. I was mistaken. My second option is not Nivolumab. It would be Pembro as a single agent. This decision feels like a roll of the dice.
-
- November 28, 2016 at 5:00 pm
Hi Ed. I was mistaken. My second option is not Nivolumab. It would be Pembro as a single agent. This decision feels like a roll of the dice.
-
- November 28, 2016 at 5:24 pm
There is no way of knowing whether you will be one of the people that gets a bad side effect from treatment. Ipi/Nivo is the best option out there right now. My thoughts would be, give it a try, you'll be closely monitered by your onc, if anything serious comes up, it will get taken care of with steroids and what not before it becomes too serious. You'll let your onc know right away about any side effects you experience in order for treatment of those to be quick.
Or, you could do Ipi/Nivo and have very few side effects and get through it fine. There are only 4 doses that include Ipi, and that's the drug everyone gets scared of. After that it is just maintanence doses of Nivo alone, which has shown to be easier on people as far as side effects go.
It's really whatever you're most comfortable doing, Pembro is also a good drug, just doesn't have quite as high of a response rate as the combo of Ipi/Nivo. But, people have had good response from PD-1 drugs alone, so it's still a good option.
All the best,
-
- November 28, 2016 at 5:24 pm
There is no way of knowing whether you will be one of the people that gets a bad side effect from treatment. Ipi/Nivo is the best option out there right now. My thoughts would be, give it a try, you'll be closely monitered by your onc, if anything serious comes up, it will get taken care of with steroids and what not before it becomes too serious. You'll let your onc know right away about any side effects you experience in order for treatment of those to be quick.
Or, you could do Ipi/Nivo and have very few side effects and get through it fine. There are only 4 doses that include Ipi, and that's the drug everyone gets scared of. After that it is just maintanence doses of Nivo alone, which has shown to be easier on people as far as side effects go.
It's really whatever you're most comfortable doing, Pembro is also a good drug, just doesn't have quite as high of a response rate as the combo of Ipi/Nivo. But, people have had good response from PD-1 drugs alone, so it's still a good option.
All the best,
-
- November 28, 2016 at 5:55 pm
Each person is an individual and each treatment reacts differently to each person.
My husband did the Ipi and made it through all 4 of the doses plus18 months of maintenance doses. No one knows how they are going to react to the drugs. There were 12 of them that started on this trial when he did and out of the 12 eight of them became NED for a period with 2 of them over 3.5 years. And one of those which is my husband for over 4.5 years now.
Judy (loving wife of Gene Stage IV and now NED for 4.5 years.)
-
- November 28, 2016 at 5:55 pm
Each person is an individual and each treatment reacts differently to each person.
My husband did the Ipi and made it through all 4 of the doses plus18 months of maintenance doses. No one knows how they are going to react to the drugs. There were 12 of them that started on this trial when he did and out of the 12 eight of them became NED for a period with 2 of them over 3.5 years. And one of those which is my husband for over 4.5 years now.
Judy (loving wife of Gene Stage IV and now NED for 4.5 years.)
-
- November 28, 2016 at 5:55 pm
Each person is an individual and each treatment reacts differently to each person.
My husband did the Ipi and made it through all 4 of the doses plus18 months of maintenance doses. No one knows how they are going to react to the drugs. There were 12 of them that started on this trial when he did and out of the 12 eight of them became NED for a period with 2 of them over 3.5 years. And one of those which is my husband for over 4.5 years now.
Judy (loving wife of Gene Stage IV and now NED for 4.5 years.)
-
- November 28, 2016 at 6:26 pm
Thanks Jenn for responding. I'd love to know more about your experiences with this combo.
-
- November 28, 2016 at 6:26 pm
Thanks Jenn for responding. I'd love to know more about your experiences with this combo.
-
- November 28, 2016 at 6:26 pm
Thanks Jenn for responding. I'd love to know more about your experiences with this combo.
-
- November 28, 2016 at 7:05 pm
I have done the first 2 combo infusions. No major side effects so far. I also did Ipi alone before this in the adjuvant setting which is a higher dose than regular. I did not have any major side effects from the 6 Ipi alone infusions I had. There's more info about all my infusions and side effects in my profile, you can check it out. So far, I am doing ok. But I am always on alert to make sure if something seems off with me I let my onc know so she can always be on top of anything that might need treating.
-
- November 28, 2016 at 7:05 pm
I have done the first 2 combo infusions. No major side effects so far. I also did Ipi alone before this in the adjuvant setting which is a higher dose than regular. I did not have any major side effects from the 6 Ipi alone infusions I had. There's more info about all my infusions and side effects in my profile, you can check it out. So far, I am doing ok. But I am always on alert to make sure if something seems off with me I let my onc know so she can always be on top of anything that might need treating.
-
- November 28, 2016 at 7:05 pm
I have done the first 2 combo infusions. No major side effects so far. I also did Ipi alone before this in the adjuvant setting which is a higher dose than regular. I did not have any major side effects from the 6 Ipi alone infusions I had. There's more info about all my infusions and side effects in my profile, you can check it out. So far, I am doing ok. But I am always on alert to make sure if something seems off with me I let my onc know so she can always be on top of anything that might need treating.
-
- November 28, 2016 at 6:29 pm
Thanks for responding Jenn. I'd love to hear how this combo is going for you.
-
- November 28, 2016 at 6:29 pm
Thanks for responding Jenn. I'd love to hear how this combo is going for you.
-
- November 28, 2016 at 6:29 pm
Thanks for responding Jenn. I'd love to hear how this combo is going for you.
-
- November 28, 2016 at 5:24 pm
There is no way of knowing whether you will be one of the people that gets a bad side effect from treatment. Ipi/Nivo is the best option out there right now. My thoughts would be, give it a try, you'll be closely monitered by your onc, if anything serious comes up, it will get taken care of with steroids and what not before it becomes too serious. You'll let your onc know right away about any side effects you experience in order for treatment of those to be quick.
Or, you could do Ipi/Nivo and have very few side effects and get through it fine. There are only 4 doses that include Ipi, and that's the drug everyone gets scared of. After that it is just maintanence doses of Nivo alone, which has shown to be easier on people as far as side effects go.
It's really whatever you're most comfortable doing, Pembro is also a good drug, just doesn't have quite as high of a response rate as the combo of Ipi/Nivo. But, people have had good response from PD-1 drugs alone, so it's still a good option.
All the best,
-
- November 28, 2016 at 11:55 pm
Hi Mark,
Sorry you are facing this decision. You've been given important things to think about. Pembro (keytruda) and Nivo (opdivo) have similar response rates (around 40%) and similar side effect profiles….less than those with ipi. Ipi alone has a roughly 15% response rate with harsher side effects. Yes, the ipi/nivo combo has better response rates than all of the above, but increased side effects due to the bad boy ipi. However, there is this:
In this study, folks who had to stop ipi/nivo due to side effects had an equivalent response rate to those who continued at 18 months! Pretty cool.
And if you want a nice review of immunotherapy generally- there is this: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/if-you-like-graphs-cool-pics-and-fairly.html
I wish you well whatever you choose. Celeste
-
- November 28, 2016 at 11:55 pm
Hi Mark,
Sorry you are facing this decision. You've been given important things to think about. Pembro (keytruda) and Nivo (opdivo) have similar response rates (around 40%) and similar side effect profiles….less than those with ipi. Ipi alone has a roughly 15% response rate with harsher side effects. Yes, the ipi/nivo combo has better response rates than all of the above, but increased side effects due to the bad boy ipi. However, there is this:
In this study, folks who had to stop ipi/nivo due to side effects had an equivalent response rate to those who continued at 18 months! Pretty cool.
And if you want a nice review of immunotherapy generally- there is this: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/if-you-like-graphs-cool-pics-and-fairly.html
I wish you well whatever you choose. Celeste
-
- November 28, 2016 at 11:55 pm
Hi Mark,
Sorry you are facing this decision. You've been given important things to think about. Pembro (keytruda) and Nivo (opdivo) have similar response rates (around 40%) and similar side effect profiles….less than those with ipi. Ipi alone has a roughly 15% response rate with harsher side effects. Yes, the ipi/nivo combo has better response rates than all of the above, but increased side effects due to the bad boy ipi. However, there is this:
In this study, folks who had to stop ipi/nivo due to side effects had an equivalent response rate to those who continued at 18 months! Pretty cool.
And if you want a nice review of immunotherapy generally- there is this: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/if-you-like-graphs-cool-pics-and-fairly.html
I wish you well whatever you choose. Celeste
-
- November 29, 2016 at 12:18 pm
Hi Mark,
I had second dose of ipi nivo 8 days ago. So far nothing too dramatic to report.
The way I understand it is that ipi fires up your immune system- for some this takes fewr doses than others and so they have had sufficient of the drug to do its job if high grade side effects kick in. The thing is not to hide side effects in the hope of getting the next dose..as you may just make things difficult and get no benefit. Specialist centres are getting better at managing the side effects as they know what to expect and are quicker to assess for colitis etc
Generally , if the ipi element is stopped for side effects then its steroids with taper and then nivo as single agent seem to follow. However, it could be that if problems are severe they may be reluctant to go to nivo before steroid taper is completed.
Nivo works using the PD1 pathway and helps your ramped up immune system identify and attack the tumours.
The general recommendations seem to be ipi nivo first choice if patient has decent performance status and has sufficient resilience to cope with side effects if they come. this gives you an idea- slide 43/55 http://slideplayer.com/slide/10812486/
In the end I think the decision comes down to your opinion of what is the bigger risk- increased risk of side effects v lower % repsponse rates on pd1 drugs. Think the jury is still out on the longer term survival stats as data has yet to be published.
The trend seems to be toward combo treatments- as the additional agent may turn out to be the one that tips the balance towards response- complete or otherwise.
I'm guessing too that if you go with nivo initially the ipi will no longer be on the table ?
Also, clinical trials tend to have more paperwork etc but the docs managing them generally have more experience.
My oncologist sat on the fence and said the decision was "finely balanced" in my case -probably due to a surgery two months earlier and still being on high dose antibiotics.
It is a great pity there is no way of accurately predicting response as this would save us all the heartache of possibly having more toxic treatments with no benefits but we are lucky to have access to these drugs compared to those only a few years earlier. This is the uk guidance for the combo https://www.nice.org.uk/guidance/ta400 loads of detail if you look in the evidence tab etc.
I'm crossing my fingers I made the right call- but appreciate that I may end up with serious side effects after dose 3- Christmas and my daughters 21st- but then again- maybe not. We will see….
Don't think there is a right or wrong answer here- think you have to gather your information and go with whatever your gut instinct says- or if it gets too stressful you could alway toss a coin ?
Hugs and good wishes
Deb
-
- November 29, 2016 at 12:18 pm
Hi Mark,
I had second dose of ipi nivo 8 days ago. So far nothing too dramatic to report.
The way I understand it is that ipi fires up your immune system- for some this takes fewr doses than others and so they have had sufficient of the drug to do its job if high grade side effects kick in. The thing is not to hide side effects in the hope of getting the next dose..as you may just make things difficult and get no benefit. Specialist centres are getting better at managing the side effects as they know what to expect and are quicker to assess for colitis etc
Generally , if the ipi element is stopped for side effects then its steroids with taper and then nivo as single agent seem to follow. However, it could be that if problems are severe they may be reluctant to go to nivo before steroid taper is completed.
Nivo works using the PD1 pathway and helps your ramped up immune system identify and attack the tumours.
The general recommendations seem to be ipi nivo first choice if patient has decent performance status and has sufficient resilience to cope with side effects if they come. this gives you an idea- slide 43/55 http://slideplayer.com/slide/10812486/
In the end I think the decision comes down to your opinion of what is the bigger risk- increased risk of side effects v lower % repsponse rates on pd1 drugs. Think the jury is still out on the longer term survival stats as data has yet to be published.
The trend seems to be toward combo treatments- as the additional agent may turn out to be the one that tips the balance towards response- complete or otherwise.
I'm guessing too that if you go with nivo initially the ipi will no longer be on the table ?
Also, clinical trials tend to have more paperwork etc but the docs managing them generally have more experience.
My oncologist sat on the fence and said the decision was "finely balanced" in my case -probably due to a surgery two months earlier and still being on high dose antibiotics.
It is a great pity there is no way of accurately predicting response as this would save us all the heartache of possibly having more toxic treatments with no benefits but we are lucky to have access to these drugs compared to those only a few years earlier. This is the uk guidance for the combo https://www.nice.org.uk/guidance/ta400 loads of detail if you look in the evidence tab etc.
I'm crossing my fingers I made the right call- but appreciate that I may end up with serious side effects after dose 3- Christmas and my daughters 21st- but then again- maybe not. We will see….
Don't think there is a right or wrong answer here- think you have to gather your information and go with whatever your gut instinct says- or if it gets too stressful you could alway toss a coin ?
Hugs and good wishes
Deb
-
- November 29, 2016 at 12:18 pm
Hi Mark,
I had second dose of ipi nivo 8 days ago. So far nothing too dramatic to report.
The way I understand it is that ipi fires up your immune system- for some this takes fewr doses than others and so they have had sufficient of the drug to do its job if high grade side effects kick in. The thing is not to hide side effects in the hope of getting the next dose..as you may just make things difficult and get no benefit. Specialist centres are getting better at managing the side effects as they know what to expect and are quicker to assess for colitis etc
Generally , if the ipi element is stopped for side effects then its steroids with taper and then nivo as single agent seem to follow. However, it could be that if problems are severe they may be reluctant to go to nivo before steroid taper is completed.
Nivo works using the PD1 pathway and helps your ramped up immune system identify and attack the tumours.
The general recommendations seem to be ipi nivo first choice if patient has decent performance status and has sufficient resilience to cope with side effects if they come. this gives you an idea- slide 43/55 http://slideplayer.com/slide/10812486/
In the end I think the decision comes down to your opinion of what is the bigger risk- increased risk of side effects v lower % repsponse rates on pd1 drugs. Think the jury is still out on the longer term survival stats as data has yet to be published.
The trend seems to be toward combo treatments- as the additional agent may turn out to be the one that tips the balance towards response- complete or otherwise.
I'm guessing too that if you go with nivo initially the ipi will no longer be on the table ?
Also, clinical trials tend to have more paperwork etc but the docs managing them generally have more experience.
My oncologist sat on the fence and said the decision was "finely balanced" in my case -probably due to a surgery two months earlier and still being on high dose antibiotics.
It is a great pity there is no way of accurately predicting response as this would save us all the heartache of possibly having more toxic treatments with no benefits but we are lucky to have access to these drugs compared to those only a few years earlier. This is the uk guidance for the combo https://www.nice.org.uk/guidance/ta400 loads of detail if you look in the evidence tab etc.
I'm crossing my fingers I made the right call- but appreciate that I may end up with serious side effects after dose 3- Christmas and my daughters 21st- but then again- maybe not. We will see….
Don't think there is a right or wrong answer here- think you have to gather your information and go with whatever your gut instinct says- or if it gets too stressful you could alway toss a coin ?
Hugs and good wishes
Deb
-
- December 2, 2016 at 4:44 am
I did the ipi/nivo combo.
had a rash and fatigue after the first dose (june 2016)
got nothing and felt great after the 2nd dose (july 2016)
pituitary swelling 1 week after the third dose and had to go on steroids (august 2016)
stopped the combo treatment as soon as i went on steroids. I was really bummed to not have made it to the 4th dose.
Last scans – NED (October 2016)
Right now I'm on the maintenance Nivo every 2 weeks and i'm still on steroids but low dose now. Endocrinologist won't try to wean me below 5mg until I'm off the Nivo just in case id has permanent damage and doesn't come back to working full force (don't want the pituitary issues again). The only other side affect is that I got vitiligo – not skiing but hair. All the hair on my body is white. I guess small price to pay to abe NED.
Good luck!
karen
-
- December 2, 2016 at 4:44 am
I did the ipi/nivo combo.
had a rash and fatigue after the first dose (june 2016)
got nothing and felt great after the 2nd dose (july 2016)
pituitary swelling 1 week after the third dose and had to go on steroids (august 2016)
stopped the combo treatment as soon as i went on steroids. I was really bummed to not have made it to the 4th dose.
Last scans – NED (October 2016)
Right now I'm on the maintenance Nivo every 2 weeks and i'm still on steroids but low dose now. Endocrinologist won't try to wean me below 5mg until I'm off the Nivo just in case id has permanent damage and doesn't come back to working full force (don't want the pituitary issues again). The only other side affect is that I got vitiligo – not skiing but hair. All the hair on my body is white. I guess small price to pay to abe NED.
Good luck!
karen
-
- December 2, 2016 at 4:44 am
I did the ipi/nivo combo.
had a rash and fatigue after the first dose (june 2016)
got nothing and felt great after the 2nd dose (july 2016)
pituitary swelling 1 week after the third dose and had to go on steroids (august 2016)
stopped the combo treatment as soon as i went on steroids. I was really bummed to not have made it to the 4th dose.
Last scans – NED (October 2016)
Right now I'm on the maintenance Nivo every 2 weeks and i'm still on steroids but low dose now. Endocrinologist won't try to wean me below 5mg until I'm off the Nivo just in case id has permanent damage and doesn't come back to working full force (don't want the pituitary issues again). The only other side affect is that I got vitiligo – not skiing but hair. All the hair on my body is white. I guess small price to pay to abe NED.
Good luck!
karen
-
- You must be logged in to reply to this topic.