› Forums › General Melanoma Community › Obdivo and Yervoy Regimen
- This topic has 33 replies, 6 voices, and was last updated 8 years, 10 months ago by
sallyandree.
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- July 10, 2016 at 2:26 am
My significant other has Stage VI melanoma and has been on an Odivo and Yervoy regimen since the beginning of April (4 treatments, given every 3 weeks). I cannot recall what the dosage is that he has been on, but his doctor said that he has been taking the maximum amounts. He has reached the end of the regimen, and we are taking him in for a PET scan on Monday to see if it has been working. On Wednesday he will be starting a regimen of Opdivo every two weeks (a total of five treatments). Has anyone else been through this regimen? I am hopeful that the side effects from just taking the Opdivo with no Yervoy will be less hard on him than the combination of the two. The melanoma has traveled from the original site (his back) to his stomach, and it is difficult for him to eat much, let alone that the medicine has him throwing up daily.
Thank you, Sally
- Replies
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- July 10, 2016 at 2:27 am
My apologies, correction to my post above, that should be Stage IV of course, not Stage VI!
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- July 10, 2016 at 2:27 am
My apologies, correction to my post above, that should be Stage IV of course, not Stage VI!
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- July 10, 2016 at 2:27 am
My apologies, correction to my post above, that should be Stage IV of course, not Stage VI!
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- July 10, 2016 at 3:22 am
Have not heard of any immunotherapy drug causing daily vomiting as a side effect. Assuming his oncologist is aware of this? Vomiting is not a normal side effect, would definitely be unusual to happen more than a couple of times during immunotherapy treatment. Assuming it is because of the location of his tumor/tumors in stomach, not so much the drug. Hope this next part with Opdivo only makes him feel better than he's been feeling.
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- July 10, 2016 at 3:37 am
Thank you for your response. He tells me that the taste of the chemicals from the treatment are what make him feel nauseated and that is what my understanding is as to why he throws up. He also has muscle fatigue, tired all the time, dizziness, and at one point a few weeks into the regimen, he had a horrible rash all over his body, which went away and fortunately has not since come back. At times he wakes up feeling like he has the worst hangover he has ever had, yet, has had no alcohol since starting the treatments.
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- July 10, 2016 at 4:36 am
Have never experienced chemical taste from immunotherapy… haven't heard anyone else mention that either. That's different. All of these side effects should be brought up to his oncologist when they happen, should not let things just keep going. With a lot of these immunotherapy side effects things can get worse and progress into things that could be permanent. Any persistent headaches need to be mentioned ASAP. The muscle fatigue and dizziness need to be brought up to oncologist. Feeling generally more tired than usual is typical, but other stuff needs to be brought to oncologist attention as they happen, to make sure he gets treated for any side effects that could cause real harm and damage.
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- July 10, 2016 at 4:36 am
Have never experienced chemical taste from immunotherapy… haven't heard anyone else mention that either. That's different. All of these side effects should be brought up to his oncologist when they happen, should not let things just keep going. With a lot of these immunotherapy side effects things can get worse and progress into things that could be permanent. Any persistent headaches need to be mentioned ASAP. The muscle fatigue and dizziness need to be brought up to oncologist. Feeling generally more tired than usual is typical, but other stuff needs to be brought to oncologist attention as they happen, to make sure he gets treated for any side effects that could cause real harm and damage.
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- July 10, 2016 at 4:36 am
Have never experienced chemical taste from immunotherapy… haven't heard anyone else mention that either. That's different. All of these side effects should be brought up to his oncologist when they happen, should not let things just keep going. With a lot of these immunotherapy side effects things can get worse and progress into things that could be permanent. Any persistent headaches need to be mentioned ASAP. The muscle fatigue and dizziness need to be brought up to oncologist. Feeling generally more tired than usual is typical, but other stuff needs to be brought to oncologist attention as they happen, to make sure he gets treated for any side effects that could cause real harm and damage.
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- July 10, 2016 at 3:37 am
Thank you for your response. He tells me that the taste of the chemicals from the treatment are what make him feel nauseated and that is what my understanding is as to why he throws up. He also has muscle fatigue, tired all the time, dizziness, and at one point a few weeks into the regimen, he had a horrible rash all over his body, which went away and fortunately has not since come back. At times he wakes up feeling like he has the worst hangover he has ever had, yet, has had no alcohol since starting the treatments.
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- July 10, 2016 at 3:37 am
Thank you for your response. He tells me that the taste of the chemicals from the treatment are what make him feel nauseated and that is what my understanding is as to why he throws up. He also has muscle fatigue, tired all the time, dizziness, and at one point a few weeks into the regimen, he had a horrible rash all over his body, which went away and fortunately has not since come back. At times he wakes up feeling like he has the worst hangover he has ever had, yet, has had no alcohol since starting the treatments.
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- July 10, 2016 at 3:22 am
Have not heard of any immunotherapy drug causing daily vomiting as a side effect. Assuming his oncologist is aware of this? Vomiting is not a normal side effect, would definitely be unusual to happen more than a couple of times during immunotherapy treatment. Assuming it is because of the location of his tumor/tumors in stomach, not so much the drug. Hope this next part with Opdivo only makes him feel better than he's been feeling.
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- July 10, 2016 at 3:22 am
Have not heard of any immunotherapy drug causing daily vomiting as a side effect. Assuming his oncologist is aware of this? Vomiting is not a normal side effect, would definitely be unusual to happen more than a couple of times during immunotherapy treatment. Assuming it is because of the location of his tumor/tumors in stomach, not so much the drug. Hope this next part with Opdivo only makes him feel better than he's been feeling.
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- July 10, 2016 at 9:42 am
I was treated with Yervoy (no Opdivo).
I had all the side effects your significant other describes other than the weird taste. (My lack or appetite/nausea only happened after the fourth infusion of Yervoy when, unknown to me at the time, my anterior pituitary was inflamed.)
I am staying this because his side effects seem very Yervoy-like to me, so fingers-crossed they will not return when he is on Opdivo alone.
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- July 10, 2016 at 9:42 am
I was treated with Yervoy (no Opdivo).
I had all the side effects your significant other describes other than the weird taste. (My lack or appetite/nausea only happened after the fourth infusion of Yervoy when, unknown to me at the time, my anterior pituitary was inflamed.)
I am staying this because his side effects seem very Yervoy-like to me, so fingers-crossed they will not return when he is on Opdivo alone.
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- July 10, 2016 at 9:42 am
I was treated with Yervoy (no Opdivo).
I had all the side effects your significant other describes other than the weird taste. (My lack or appetite/nausea only happened after the fourth infusion of Yervoy when, unknown to me at the time, my anterior pituitary was inflamed.)
I am staying this because his side effects seem very Yervoy-like to me, so fingers-crossed they will not return when he is on Opdivo alone.
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- July 10, 2016 at 1:53 pm
Sorry you and your dear one are dealing with all this. Ipilimumab/yervoy and the anti-PD1 products (pembrolizumab/keytruda and nivolumab/opdivo) are all categorized as immunotherapy and have very similar side effects. Unfortunately, folks taking ipi have them a lot more often and sometimes to an increased degree. You can look at the thread 3 down from yours re the S1404 trial…I put up a couple of links re those side effects.
I took nivo for 2 1/2 years starting in 2010. Many folks in my trial developed "mucositis" which is irritation and a dry mouth at the least…all the way to mouth ulcers….which I developed repeatedly as have others who have posted on this forum. A weird sensarion and bad taste was something I dealt with a lot. It did impact my eating due to decreased appetite (secondary to the taste) and due to pain from the ulcers. And when you remember that the mouth is part of a long tube that is our GI tract…and these products often cause colitis…it kind of makes sense!
Here are a couple of posts I put out at the time: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2011/04/ugggh.html
I warn you this one is incredibly boring…but you can see that I comment about the weird mouth issues early on: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html
Given that you are dealing with stomach mets and the risk of the vomiting being related to cololitis…you certainly need to talk to your doc about what is going on sooner…rather than later. But, I wanted your friend to know that what he is experiencing re the weird mouth issues are real, documented and very likely related to his therapy. On another good note, I remain disease free for over 6 years now, after brain and lung mets and my nivo therapy. My fingers crossed that the ipi/nivo combo…with its even better response rate than nivo alone…will be the treatment that helps you and yours. Talk to your doc. Hand in there. Wishing you both well. Celeste
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- July 10, 2016 at 1:53 pm
Sorry you and your dear one are dealing with all this. Ipilimumab/yervoy and the anti-PD1 products (pembrolizumab/keytruda and nivolumab/opdivo) are all categorized as immunotherapy and have very similar side effects. Unfortunately, folks taking ipi have them a lot more often and sometimes to an increased degree. You can look at the thread 3 down from yours re the S1404 trial…I put up a couple of links re those side effects.
I took nivo for 2 1/2 years starting in 2010. Many folks in my trial developed "mucositis" which is irritation and a dry mouth at the least…all the way to mouth ulcers….which I developed repeatedly as have others who have posted on this forum. A weird sensarion and bad taste was something I dealt with a lot. It did impact my eating due to decreased appetite (secondary to the taste) and due to pain from the ulcers. And when you remember that the mouth is part of a long tube that is our GI tract…and these products often cause colitis…it kind of makes sense!
Here are a couple of posts I put out at the time: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2011/04/ugggh.html
I warn you this one is incredibly boring…but you can see that I comment about the weird mouth issues early on: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html
Given that you are dealing with stomach mets and the risk of the vomiting being related to cololitis…you certainly need to talk to your doc about what is going on sooner…rather than later. But, I wanted your friend to know that what he is experiencing re the weird mouth issues are real, documented and very likely related to his therapy. On another good note, I remain disease free for over 6 years now, after brain and lung mets and my nivo therapy. My fingers crossed that the ipi/nivo combo…with its even better response rate than nivo alone…will be the treatment that helps you and yours. Talk to your doc. Hand in there. Wishing you both well. Celeste
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- July 10, 2016 at 1:53 pm
Sorry you and your dear one are dealing with all this. Ipilimumab/yervoy and the anti-PD1 products (pembrolizumab/keytruda and nivolumab/opdivo) are all categorized as immunotherapy and have very similar side effects. Unfortunately, folks taking ipi have them a lot more often and sometimes to an increased degree. You can look at the thread 3 down from yours re the S1404 trial…I put up a couple of links re those side effects.
I took nivo for 2 1/2 years starting in 2010. Many folks in my trial developed "mucositis" which is irritation and a dry mouth at the least…all the way to mouth ulcers….which I developed repeatedly as have others who have posted on this forum. A weird sensarion and bad taste was something I dealt with a lot. It did impact my eating due to decreased appetite (secondary to the taste) and due to pain from the ulcers. And when you remember that the mouth is part of a long tube that is our GI tract…and these products often cause colitis…it kind of makes sense!
Here are a couple of posts I put out at the time: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2011/04/ugggh.html
I warn you this one is incredibly boring…but you can see that I comment about the weird mouth issues early on: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html
Given that you are dealing with stomach mets and the risk of the vomiting being related to cololitis…you certainly need to talk to your doc about what is going on sooner…rather than later. But, I wanted your friend to know that what he is experiencing re the weird mouth issues are real, documented and very likely related to his therapy. On another good note, I remain disease free for over 6 years now, after brain and lung mets and my nivo therapy. My fingers crossed that the ipi/nivo combo…with its even better response rate than nivo alone…will be the treatment that helps you and yours. Talk to your doc. Hand in there. Wishing you both well. Celeste
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- July 10, 2016 at 2:01 pm
Hi Sally, sorry to here that your husband is having some tough side effects. I have been part of checkmate 067 for the last 2 and a half years and in the Risk of participation section of the study Nausea is listed for both Ipilimumab( Yervoy) and Nivolumab in the very likely (21% or more) section and Vomiting is listed in the less likely 5 to 20% chance of happening. I am more than a little curious at how your husband is getting the drugs and the duration, is he part of a trial? The 5 treatment total for Opdivo (Nivo) is kind of strange!!! I have included a link to Bristol Myer Squibb, the company that makes the drugs. The possible side effects are listed for both drugs and in this case since it is talking about the combination the information gets combined in some sections. Best Wishes!!!!Ed http://investor.bms.com/investors/news-and-events/press-releases/press-release-details/2015/phase-iii-checkmate–067-trial-demonstrates-superior-progression-free-survival-of-opdivoyervoy-regimen-or-opdivo-monotherapy-vs-yervoy-monotherapy-in-previously-untreated-patients-with-advanced-melanoma/
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- July 10, 2016 at 2:01 pm
Hi Sally, sorry to here that your husband is having some tough side effects. I have been part of checkmate 067 for the last 2 and a half years and in the Risk of participation section of the study Nausea is listed for both Ipilimumab( Yervoy) and Nivolumab in the very likely (21% or more) section and Vomiting is listed in the less likely 5 to 20% chance of happening. I am more than a little curious at how your husband is getting the drugs and the duration, is he part of a trial? The 5 treatment total for Opdivo (Nivo) is kind of strange!!! I have included a link to Bristol Myer Squibb, the company that makes the drugs. The possible side effects are listed for both drugs and in this case since it is talking about the combination the information gets combined in some sections. Best Wishes!!!!Ed http://investor.bms.com/investors/news-and-events/press-releases/press-release-details/2015/phase-iii-checkmate–067-trial-demonstrates-superior-progression-free-survival-of-opdivoyervoy-regimen-or-opdivo-monotherapy-vs-yervoy-monotherapy-in-previously-untreated-patients-with-advanced-melanoma/
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- July 10, 2016 at 2:01 pm
Hi Sally, sorry to here that your husband is having some tough side effects. I have been part of checkmate 067 for the last 2 and a half years and in the Risk of participation section of the study Nausea is listed for both Ipilimumab( Yervoy) and Nivolumab in the very likely (21% or more) section and Vomiting is listed in the less likely 5 to 20% chance of happening. I am more than a little curious at how your husband is getting the drugs and the duration, is he part of a trial? The 5 treatment total for Opdivo (Nivo) is kind of strange!!! I have included a link to Bristol Myer Squibb, the company that makes the drugs. The possible side effects are listed for both drugs and in this case since it is talking about the combination the information gets combined in some sections. Best Wishes!!!!Ed http://investor.bms.com/investors/news-and-events/press-releases/press-release-details/2015/phase-iii-checkmate–067-trial-demonstrates-superior-progression-free-survival-of-opdivoyervoy-regimen-or-opdivo-monotherapy-vs-yervoy-monotherapy-in-previously-untreated-patients-with-advanced-melanoma/
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- July 11, 2016 at 5:27 am
Sally,
I think I might know why your husband has the funny taste in his mouth and why he is throwing up.
He might have thrush. My Mom had it with Yervoy and it took a while for the doctor to diagnosed and by the time it was diagnosed she would hardly eat or drink anything. It was terrible. Especially when she ended up in the hospital for a few days and they said they wouldn't release her until she ate 1500 calories a day.
Being a good daughter I went to TJ's got all sorts of yummy food that she said tasted like Raid and forced her to eat. It made her sick 🙁 She was not happy. It took a while to go away, but she had the mouth sores, was nauseous when she ate and had the horrible taste in her mouth even with water…
I've heard from other patients that thrush manifests itself differently in people. Some get metallic tastes, my Mom said her mouth tasted like the smell of raid, I've had a burning issue with my tongue for 4 years and I thought I was gluten intolerant only to find it was thrush, which took 9 to 10 month to clear up.
If it is thrush there is a mouth rinse the doctor can prescribe and I'd lay off any sugary foods or carbs and eat lots of Greek yogurt.
Hopefully this is the right diagnosis and not something else. Let us know what the doctor thinks!
Good Luck!
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- July 11, 2016 at 5:27 am
Sally,
I think I might know why your husband has the funny taste in his mouth and why he is throwing up.
He might have thrush. My Mom had it with Yervoy and it took a while for the doctor to diagnosed and by the time it was diagnosed she would hardly eat or drink anything. It was terrible. Especially when she ended up in the hospital for a few days and they said they wouldn't release her until she ate 1500 calories a day.
Being a good daughter I went to TJ's got all sorts of yummy food that she said tasted like Raid and forced her to eat. It made her sick 🙁 She was not happy. It took a while to go away, but she had the mouth sores, was nauseous when she ate and had the horrible taste in her mouth even with water…
I've heard from other patients that thrush manifests itself differently in people. Some get metallic tastes, my Mom said her mouth tasted like the smell of raid, I've had a burning issue with my tongue for 4 years and I thought I was gluten intolerant only to find it was thrush, which took 9 to 10 month to clear up.
If it is thrush there is a mouth rinse the doctor can prescribe and I'd lay off any sugary foods or carbs and eat lots of Greek yogurt.
Hopefully this is the right diagnosis and not something else. Let us know what the doctor thinks!
Good Luck!
-
- July 11, 2016 at 5:27 am
Sally,
I think I might know why your husband has the funny taste in his mouth and why he is throwing up.
He might have thrush. My Mom had it with Yervoy and it took a while for the doctor to diagnosed and by the time it was diagnosed she would hardly eat or drink anything. It was terrible. Especially when she ended up in the hospital for a few days and they said they wouldn't release her until she ate 1500 calories a day.
Being a good daughter I went to TJ's got all sorts of yummy food that she said tasted like Raid and forced her to eat. It made her sick 🙁 She was not happy. It took a while to go away, but she had the mouth sores, was nauseous when she ate and had the horrible taste in her mouth even with water…
I've heard from other patients that thrush manifests itself differently in people. Some get metallic tastes, my Mom said her mouth tasted like the smell of raid, I've had a burning issue with my tongue for 4 years and I thought I was gluten intolerant only to find it was thrush, which took 9 to 10 month to clear up.
If it is thrush there is a mouth rinse the doctor can prescribe and I'd lay off any sugary foods or carbs and eat lots of Greek yogurt.
Hopefully this is the right diagnosis and not something else. Let us know what the doctor thinks!
Good Luck!
-
- July 11, 2016 at 5:27 am
Sally,
I think I might know why your husband has the funny taste in his mouth and why he is throwing up.
He might have thrush. My Mom had it with Yervoy and it took a while for the doctor to diagnosed and by the time it was diagnosed she would hardly eat or drink anything. It was terrible. Especially when she ended up in the hospital for a few days and they said they wouldn't release her until she ate 1500 calories a day.
Being a good daughter I went to TJ's got all sorts of yummy food that she said tasted like Raid and forced her to eat. It made her sick 🙁 She was not happy. It took a while to go away, but she had the mouth sores, was nauseous when she ate and had the horrible taste in her mouth even with water…
I've heard from other patients that thrush manifests itself differently in people. Some get metallic tastes, my Mom said her mouth tasted like the smell of raid, I've had a burning issue with my tongue for 4 years and I thought I was gluten intolerant only to find it was thrush, which took 9 to 10 month to clear up.
If it is thrush there is a mouth rinse the doctor can prescribe and I'd lay off any sugary foods or carbs and eat lots of Greek yogurt.
Hopefully this is the right diagnosis and not something else. Let us know what the doctor thinks!
Good Luck!
-
- July 11, 2016 at 5:27 am
Sally,
I think I might know why your husband has the funny taste in his mouth and why he is throwing up.
He might have thrush. My Mom had it with Yervoy and it took a while for the doctor to diagnosed and by the time it was diagnosed she would hardly eat or drink anything. It was terrible. Especially when she ended up in the hospital for a few days and they said they wouldn't release her until she ate 1500 calories a day.
Being a good daughter I went to TJ's got all sorts of yummy food that she said tasted like Raid and forced her to eat. It made her sick 🙁 She was not happy. It took a while to go away, but she had the mouth sores, was nauseous when she ate and had the horrible taste in her mouth even with water…
I've heard from other patients that thrush manifests itself differently in people. Some get metallic tastes, my Mom said her mouth tasted like the smell of raid, I've had a burning issue with my tongue for 4 years and I thought I was gluten intolerant only to find it was thrush, which took 9 to 10 month to clear up.
If it is thrush there is a mouth rinse the doctor can prescribe and I'd lay off any sugary foods or carbs and eat lots of Greek yogurt.
Hopefully this is the right diagnosis and not something else. Let us know what the doctor thinks!
Good Luck!
-
- July 11, 2016 at 5:27 am
Sally,
I think I might know why your husband has the funny taste in his mouth and why he is throwing up.
He might have thrush. My Mom had it with Yervoy and it took a while for the doctor to diagnosed and by the time it was diagnosed she would hardly eat or drink anything. It was terrible. Especially when she ended up in the hospital for a few days and they said they wouldn't release her until she ate 1500 calories a day.
Being a good daughter I went to TJ's got all sorts of yummy food that she said tasted like Raid and forced her to eat. It made her sick 🙁 She was not happy. It took a while to go away, but she had the mouth sores, was nauseous when she ate and had the horrible taste in her mouth even with water…
I've heard from other patients that thrush manifests itself differently in people. Some get metallic tastes, my Mom said her mouth tasted like the smell of raid, I've had a burning issue with my tongue for 4 years and I thought I was gluten intolerant only to find it was thrush, which took 9 to 10 month to clear up.
If it is thrush there is a mouth rinse the doctor can prescribe and I'd lay off any sugary foods or carbs and eat lots of Greek yogurt.
Hopefully this is the right diagnosis and not something else. Let us know what the doctor thinks!
Good Luck!
-
- July 11, 2016 at 5:39 am
Sally,
I forgot to mention that the dizziness might be a issue with low blood pressure on standing or brain mets. You need to find out what exactly is going on.
Brain mets can grow incredibly fast. I would urge you to have your husbands advocator order a MRI of his brain right away. You don't want to delay this.
As I understand it immunotherapies seem to work last on brain mets. So gamma knife would be in order (find the best radiation oncologists) and Keppra to prevent seizures for a while. – That's what my Mom's doctors noted.
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- July 11, 2016 at 6:03 pm
Thank you; he has had very low blood pressure the last couple of visits to the doctor. As to his appetite, it is complicated by the fact that the tumor has moved to his stomach and he was told initially that he had a six inch gash in his stomach due to the tumor (that was after his initial testing in March). I think of it as somewhat similar to someone who has had lap band surgery on the stomach, since he does get hungry and craves certain foods but his stomach cannot hold a lot of food so he gets full quickly. He tried anti nausea medicines but had trouble with them due to his stomach. Nexium seems to help.
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- July 11, 2016 at 6:03 pm
Thank you; he has had very low blood pressure the last couple of visits to the doctor. As to his appetite, it is complicated by the fact that the tumor has moved to his stomach and he was told initially that he had a six inch gash in his stomach due to the tumor (that was after his initial testing in March). I think of it as somewhat similar to someone who has had lap band surgery on the stomach, since he does get hungry and craves certain foods but his stomach cannot hold a lot of food so he gets full quickly. He tried anti nausea medicines but had trouble with them due to his stomach. Nexium seems to help.
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- July 11, 2016 at 6:03 pm
Thank you; he has had very low blood pressure the last couple of visits to the doctor. As to his appetite, it is complicated by the fact that the tumor has moved to his stomach and he was told initially that he had a six inch gash in his stomach due to the tumor (that was after his initial testing in March). I think of it as somewhat similar to someone who has had lap band surgery on the stomach, since he does get hungry and craves certain foods but his stomach cannot hold a lot of food so he gets full quickly. He tried anti nausea medicines but had trouble with them due to his stomach. Nexium seems to help.
-
- July 11, 2016 at 5:39 am
Sally,
I forgot to mention that the dizziness might be a issue with low blood pressure on standing or brain mets. You need to find out what exactly is going on.
Brain mets can grow incredibly fast. I would urge you to have your husbands advocator order a MRI of his brain right away. You don't want to delay this.
As I understand it immunotherapies seem to work last on brain mets. So gamma knife would be in order (find the best radiation oncologists) and Keppra to prevent seizures for a while. – That's what my Mom's doctors noted.
-
- July 11, 2016 at 5:39 am
Sally,
I forgot to mention that the dizziness might be a issue with low blood pressure on standing or brain mets. You need to find out what exactly is going on.
Brain mets can grow incredibly fast. I would urge you to have your husbands advocator order a MRI of his brain right away. You don't want to delay this.
As I understand it immunotherapies seem to work last on brain mets. So gamma knife would be in order (find the best radiation oncologists) and Keppra to prevent seizures for a while. – That's what my Mom's doctors noted.
-
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