› Forums › General Melanoma Community › One and done.. I guess
- This topic has 21 replies, 6 voices, and was last updated 7 years, 3 months ago by
Mamapegela.
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- February 2, 2017 at 8:50 pm
I had my first infusion of the IPI + NIVO combo on January 6th. Within four days, I developed a pretty severe rash. A couple of days after developing the rash, my oncologist put me on 150mg of Prednisone per day. That seems to be pretty common from all the research I have done. Since then, I have developed a pretty fast heart rate and hot flashes. Once I reported that to the onc, they started looking at the thyroid. I turns out my thyroid is cranking on overdrive. They gave me a pill for the heart rate and say it should self correct in the next few weeks. I am down to 60mg of Prednisone per day so the end is in sight.
The reason I am posting this is because what my melanoma care team has been telling me the past few weeks. They have said I will not be receiving my 2nd infusion of the combo. The plan is to start me on Keytruda once I am off the beta blocker and the Prednisone. I have to say I am rather depressed by that news. I have read of many people that have dealt with the same side effects I am dealing with. I don't remember them saying they had to quit because of a rash and a hyperactive thyroid. I am trying to stay positive, but it hurts knowing the best treatment plan will no longer be an option for me.
Does their plan sound correct based on what you all have been through?
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- February 2, 2017 at 9:45 pm
Hi Bradley-
Well I am in the sam boat as you- I was only able to do one dose of the combo before elevated liver enzymes and thyroid "burning out" caused my oncologist to have me switch to one agent- in my case nivolumab rather than ketruda. He said there is always the option of returning to the combo if at some point we needed to based on response to the treatment.
I am not sure how common it is for this cautious route but he told me in the beginning that he tailors treatment to each patient's tolerance and response and that this was a possiblilty. Know that even one dose of the combo has been enough to give a lasting and complete response in some people.
Wishing you the best!
Peggy
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- February 2, 2017 at 9:45 pm
Hi Bradley-
Well I am in the sam boat as you- I was only able to do one dose of the combo before elevated liver enzymes and thyroid "burning out" caused my oncologist to have me switch to one agent- in my case nivolumab rather than ketruda. He said there is always the option of returning to the combo if at some point we needed to based on response to the treatment.
I am not sure how common it is for this cautious route but he told me in the beginning that he tailors treatment to each patient's tolerance and response and that this was a possiblilty. Know that even one dose of the combo has been enough to give a lasting and complete response in some people.
Wishing you the best!
Peggy
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- February 2, 2017 at 9:45 pm
Hi Bradley-
Well I am in the sam boat as you- I was only able to do one dose of the combo before elevated liver enzymes and thyroid "burning out" caused my oncologist to have me switch to one agent- in my case nivolumab rather than ketruda. He said there is always the option of returning to the combo if at some point we needed to based on response to the treatment.
I am not sure how common it is for this cautious route but he told me in the beginning that he tailors treatment to each patient's tolerance and response and that this was a possiblilty. Know that even one dose of the combo has been enough to give a lasting and complete response in some people.
Wishing you the best!
Peggy
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- February 3, 2017 at 1:09 am
Hi Peggy,
The results for keytruda as a sole agent are looking better than nivo and it seems to have a slightly better side effect profile re liver side effects. My team had me on pred 50 mg and tapered over 6 weeks after dose 2 off the combo . Was OK for bloods re dose 3 but poor scan results and liver tests elevated again 10 days on. They want me on 10 mg of pred for now but more monitoring. But with liver mets in the mix hard to know what is driving what. Keytruda is 3 weekly and over 30 mins plus flushes so that will help re time off work etc. Good to hear from you even if some news is not what we might hope for. Hope Keytruda continues the good work..
Love from Deb x
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- February 3, 2017 at 1:09 am
Hi Peggy,
The results for keytruda as a sole agent are looking better than nivo and it seems to have a slightly better side effect profile re liver side effects. My team had me on pred 50 mg and tapered over 6 weeks after dose 2 off the combo . Was OK for bloods re dose 3 but poor scan results and liver tests elevated again 10 days on. They want me on 10 mg of pred for now but more monitoring. But with liver mets in the mix hard to know what is driving what. Keytruda is 3 weekly and over 30 mins plus flushes so that will help re time off work etc. Good to hear from you even if some news is not what we might hope for. Hope Keytruda continues the good work..
Love from Deb x
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- February 3, 2017 at 1:09 am
Hi Peggy,
The results for keytruda as a sole agent are looking better than nivo and it seems to have a slightly better side effect profile re liver side effects. My team had me on pred 50 mg and tapered over 6 weeks after dose 2 off the combo . Was OK for bloods re dose 3 but poor scan results and liver tests elevated again 10 days on. They want me on 10 mg of pred for now but more monitoring. But with liver mets in the mix hard to know what is driving what. Keytruda is 3 weekly and over 30 mins plus flushes so that will help re time off work etc. Good to hear from you even if some news is not what we might hope for. Hope Keytruda continues the good work..
Love from Deb x
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- February 4, 2017 at 2:29 am
Deb I'm sorry to hear that things are on hold for you again if I understand correctly. It feels good to be doing something, but letting the body heal and recover IS doing something right? I wasn't offered ketruda but that is interesting. I am thinking of you!
Peggy
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- February 4, 2017 at 2:29 am
Deb I'm sorry to hear that things are on hold for you again if I understand correctly. It feels good to be doing something, but letting the body heal and recover IS doing something right? I wasn't offered ketruda but that is interesting. I am thinking of you!
Peggy
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- February 4, 2017 at 2:29 am
Deb I'm sorry to hear that things are on hold for you again if I understand correctly. It feels good to be doing something, but letting the body heal and recover IS doing something right? I wasn't offered ketruda but that is interesting. I am thinking of you!
Peggy
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- February 2, 2017 at 10:49 pm
Well, one positive thing is that your immune system surely did react to it which means it attacked your melanoma too. I have had 5 combos and 5 nivo rounds, my thyriod is gone and have had a rash since the second week but my rash has never itched or burned. I also have vitiligo which is slowly spreadin up my arms. Hopefully stopping the ipi and just doing keytruda will work.
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- February 2, 2017 at 10:49 pm
Well, one positive thing is that your immune system surely did react to it which means it attacked your melanoma too. I have had 5 combos and 5 nivo rounds, my thyriod is gone and have had a rash since the second week but my rash has never itched or burned. I also have vitiligo which is slowly spreadin up my arms. Hopefully stopping the ipi and just doing keytruda will work.
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- February 2, 2017 at 10:49 pm
Well, one positive thing is that your immune system surely did react to it which means it attacked your melanoma too. I have had 5 combos and 5 nivo rounds, my thyriod is gone and have had a rash since the second week but my rash has never itched or burned. I also have vitiligo which is slowly spreadin up my arms. Hopefully stopping the ipi and just doing keytruda will work.
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- February 3, 2017 at 12:46 am
Not unusal to stop after 1 infusion, especially when thyroid is involved. But, it is unusual to go to Keytruda instead of going straight to Opdivo/Nivo alone, since that is part of the combo protocol, once the 4 main combo doses are over you go to Nivo alone infusions.. so others who couldn't do all of the combo infusions went directly to Nivo infusions, never heard of going to Keytruda, not that it's very different, just unusal way to go.
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- February 3, 2017 at 12:46 am
Not unusal to stop after 1 infusion, especially when thyroid is involved. But, it is unusual to go to Keytruda instead of going straight to Opdivo/Nivo alone, since that is part of the combo protocol, once the 4 main combo doses are over you go to Nivo alone infusions.. so others who couldn't do all of the combo infusions went directly to Nivo infusions, never heard of going to Keytruda, not that it's very different, just unusal way to go.
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- February 3, 2017 at 12:46 am
Not unusal to stop after 1 infusion, especially when thyroid is involved. But, it is unusual to go to Keytruda instead of going straight to Opdivo/Nivo alone, since that is part of the combo protocol, once the 4 main combo doses are over you go to Nivo alone infusions.. so others who couldn't do all of the combo infusions went directly to Nivo infusions, never heard of going to Keytruda, not that it's very different, just unusal way to go.
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- February 3, 2017 at 3:56 am
I was only able to tolerate two infusions of Yervoy. After a failed clinical trial at NIH, I was given Keytruda and it worked with mild side effects. (Vitiligo, rash, and fatigue) Not sure why they didn't go to Opdivo as a monotherapy. Maybe someone else can explain this.
I hope it's a success!
Terrie
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- February 3, 2017 at 3:56 am
I was only able to tolerate two infusions of Yervoy. After a failed clinical trial at NIH, I was given Keytruda and it worked with mild side effects. (Vitiligo, rash, and fatigue) Not sure why they didn't go to Opdivo as a monotherapy. Maybe someone else can explain this.
I hope it's a success!
Terrie
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- February 3, 2017 at 3:56 am
I was only able to tolerate two infusions of Yervoy. After a failed clinical trial at NIH, I was given Keytruda and it worked with mild side effects. (Vitiligo, rash, and fatigue) Not sure why they didn't go to Opdivo as a monotherapy. Maybe someone else can explain this.
I hope it's a success!
Terrie
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- February 3, 2017 at 3:38 pm
Sorry that you are dealing with such side effects. Yes, the ipi/nivo combo was a history of respose rates of 50-60% however, many folks have to stop due to side effects. This graph may make you feel a bit better: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html
"68% of those who had to discontinnue the combo had a complete or partial response"
Additionally, continuing on Nivo (Opdivo) or Pembro (Keytruda) as a single agent can provide very good responses as well. I think either would be an equally good idea. Unlike a prior poster….I have seen no definitive evidence that either has a better response rate (both are around 40%) nor different side effect profile. While results from different studies with slightly different patient populations can have the numbers wiggle around a bit…most researchers feel that these two meds have few significant differences – though they have not been compared head to head…and either should serve you well. Hang in there. Celeste
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- February 3, 2017 at 3:38 pm
Sorry that you are dealing with such side effects. Yes, the ipi/nivo combo was a history of respose rates of 50-60% however, many folks have to stop due to side effects. This graph may make you feel a bit better: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html
"68% of those who had to discontinnue the combo had a complete or partial response"
Additionally, continuing on Nivo (Opdivo) or Pembro (Keytruda) as a single agent can provide very good responses as well. I think either would be an equally good idea. Unlike a prior poster….I have seen no definitive evidence that either has a better response rate (both are around 40%) nor different side effect profile. While results from different studies with slightly different patient populations can have the numbers wiggle around a bit…most researchers feel that these two meds have few significant differences – though they have not been compared head to head…and either should serve you well. Hang in there. Celeste
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- February 3, 2017 at 3:38 pm
Sorry that you are dealing with such side effects. Yes, the ipi/nivo combo was a history of respose rates of 50-60% however, many folks have to stop due to side effects. This graph may make you feel a bit better: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html
"68% of those who had to discontinnue the combo had a complete or partial response"
Additionally, continuing on Nivo (Opdivo) or Pembro (Keytruda) as a single agent can provide very good responses as well. I think either would be an equally good idea. Unlike a prior poster….I have seen no definitive evidence that either has a better response rate (both are around 40%) nor different side effect profile. While results from different studies with slightly different patient populations can have the numbers wiggle around a bit…most researchers feel that these two meds have few significant differences – though they have not been compared head to head…and either should serve you well. Hang in there. Celeste
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