› Forums › General Melanoma Community › Bizarre skin activities ipi nivo combo
- This topic has 12 replies, 3 voices, and was last updated 9 years, 9 months ago by
geriakt.
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- November 20, 2015 at 2:13 pm
I have had one dose of ipi/nivo on 11/12 with no immediate reactions.
Anyone else have strange allergic type reactions on everyday food/activities?
Sunday, I had leftovers for dinner (seafood) and about an hour later my mouth started tingling and my upper lip swelled up. Also, I had used the same face lotion I have for years. I took Benadryl and it went away after 2 doses a few hours apart.
Yesterday, I was searching for some positive data on lepto mel and my right eyelid swelled up. I took some Benadryl again but not better yet. Waiting for phone call from Clinic, it isn't an emergency or anything just strange, dry and itchy and swollen, like pollen got in there while sitting in my office typing. Only one eye too (no makeup or anything)
no fevers.
I also have rosy cheeks like a painted Santa. Braf/Mek caused bright rosy checks but I have been off that for a few weeks.
My thought is that my overly sensitive skin has become ridiculously overly sensitive but I wanted to see if others had bizarre skin reactions?
I have 9 tiny brain mets, 5 treated with cyber knife but still there, much smaller than they were last Spring.
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- November 20, 2015 at 5:52 pm
Wow never heard of that. On zelboraf I had lots of skin issues. Rash from neck to ankles, hair fall out, skin cancers and stuff. On ipi just some minor rash and tiny bright red spots that went away. On keytruda and nivo not really much with skin. But I've never done the ipi nivo combo.
It sounds like a pollen issue but only one eye makes no sense. Kind of like you got into something you are allergic to and rubbed one eye maybe and part of your lip. Very odd.
Sorry I wasn't much help.
Artie
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- November 20, 2015 at 5:52 pm
Wow never heard of that. On zelboraf I had lots of skin issues. Rash from neck to ankles, hair fall out, skin cancers and stuff. On ipi just some minor rash and tiny bright red spots that went away. On keytruda and nivo not really much with skin. But I've never done the ipi nivo combo.
It sounds like a pollen issue but only one eye makes no sense. Kind of like you got into something you are allergic to and rubbed one eye maybe and part of your lip. Very odd.
Sorry I wasn't much help.
Artie
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- November 20, 2015 at 5:52 pm
Wow never heard of that. On zelboraf I had lots of skin issues. Rash from neck to ankles, hair fall out, skin cancers and stuff. On ipi just some minor rash and tiny bright red spots that went away. On keytruda and nivo not really much with skin. But I've never done the ipi nivo combo.
It sounds like a pollen issue but only one eye makes no sense. Kind of like you got into something you are allergic to and rubbed one eye maybe and part of your lip. Very odd.
Sorry I wasn't much help.
Artie
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- November 21, 2015 at 2:27 am
I am on either IPI or NIVO and I have the same histamine reactions with swollen lips and eyes. I really think it has more to do with allergies, pollen and mold as I had the issue off and on the past year and a half. I have had skin rash and hives too after infusions that was the drug. I take alleges as I sleep too much on the therapy. Benadryl kick my butt.
Tom
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- November 21, 2015 at 2:27 am
I am on either IPI or NIVO and I have the same histamine reactions with swollen lips and eyes. I really think it has more to do with allergies, pollen and mold as I had the issue off and on the past year and a half. I have had skin rash and hives too after infusions that was the drug. I take alleges as I sleep too much on the therapy. Benadryl kick my butt.
Tom
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- November 21, 2015 at 2:27 am
I am on either IPI or NIVO and I have the same histamine reactions with swollen lips and eyes. I really think it has more to do with allergies, pollen and mold as I had the issue off and on the past year and a half. I have had skin rash and hives too after infusions that was the drug. I take alleges as I sleep too much on the therapy. Benadryl kick my butt.
Tom
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- November 21, 2015 at 9:11 pm
Actually, I've had all sorts of strange reactions to things. I've never had an allergy a day in my life, but now have reactions to random things. And sometimes I can't pinpoint what started it. The reactions are usually quite mild… A slightly swollen lip, itchy hands, etc. one time I used a hair product I usually used often, and the side of my face and neck became red and swollen where the product ran down. It was painful for about 30 minutes and disappeared after an hour or so. I've had CT scans with contrast before, and have never had a reaction until starting the ipi/nivo trial. After we were finally able to pinpoint the cause of the reaction (which landed me in the hospital on a few occasions), I will now be pre-medicated for my next scan (December 10th!) Maybe these new "allergic reactions" are an auto immune response? I don't know, but again, most of mine are very mild!
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- November 21, 2015 at 9:11 pm
Actually, I've had all sorts of strange reactions to things. I've never had an allergy a day in my life, but now have reactions to random things. And sometimes I can't pinpoint what started it. The reactions are usually quite mild… A slightly swollen lip, itchy hands, etc. one time I used a hair product I usually used often, and the side of my face and neck became red and swollen where the product ran down. It was painful for about 30 minutes and disappeared after an hour or so. I've had CT scans with contrast before, and have never had a reaction until starting the ipi/nivo trial. After we were finally able to pinpoint the cause of the reaction (which landed me in the hospital on a few occasions), I will now be pre-medicated for my next scan (December 10th!) Maybe these new "allergic reactions" are an auto immune response? I don't know, but again, most of mine are very mild!
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- November 21, 2015 at 9:11 pm
Actually, I've had all sorts of strange reactions to things. I've never had an allergy a day in my life, but now have reactions to random things. And sometimes I can't pinpoint what started it. The reactions are usually quite mild… A slightly swollen lip, itchy hands, etc. one time I used a hair product I usually used often, and the side of my face and neck became red and swollen where the product ran down. It was painful for about 30 minutes and disappeared after an hour or so. I've had CT scans with contrast before, and have never had a reaction until starting the ipi/nivo trial. After we were finally able to pinpoint the cause of the reaction (which landed me in the hospital on a few occasions), I will now be pre-medicated for my next scan (December 10th!) Maybe these new "allergic reactions" are an auto immune response? I don't know, but again, most of mine are very mild!
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- November 22, 2015 at 12:02 am
Ellen
Like I mentioned I am on the same drug as you and have very similar allergic reactions as you do. It seems for no reason my lips will swell and tingle. It is called histamine intolerance. I can eat dinner and my lips will swell. I will eat the left overs the next day and no problem as well as vice versa. I can cut the grass and my lips and eyes will swell. My dog can lick me and my lips swell. Look up candida yeast infection. I have an epi pen benadryl and alleges by my side all the time.
This week Wednesday I had CT scans and I felt odd after. Dizzy and depressed. Then I had my infusion of NIVO. The next day I had back pain and a swollen lip. Today Saturday I had a rash on my side under my arm. I can not explain any of this. Some is a side effect from the chemo some is just allergies. I do not know if the NIVO can increase the histamine intolerance or not but my lips have swelled 3 time soon after an infusion.
If you learn anything that my cause this please let me know. I also read in a recent post Keytuda caused a bacteria infection in someone and they had to stop treatment.
Tom
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- November 22, 2015 at 12:02 am
Ellen
Like I mentioned I am on the same drug as you and have very similar allergic reactions as you do. It seems for no reason my lips will swell and tingle. It is called histamine intolerance. I can eat dinner and my lips will swell. I will eat the left overs the next day and no problem as well as vice versa. I can cut the grass and my lips and eyes will swell. My dog can lick me and my lips swell. Look up candida yeast infection. I have an epi pen benadryl and alleges by my side all the time.
This week Wednesday I had CT scans and I felt odd after. Dizzy and depressed. Then I had my infusion of NIVO. The next day I had back pain and a swollen lip. Today Saturday I had a rash on my side under my arm. I can not explain any of this. Some is a side effect from the chemo some is just allergies. I do not know if the NIVO can increase the histamine intolerance or not but my lips have swelled 3 time soon after an infusion.
If you learn anything that my cause this please let me know. I also read in a recent post Keytuda caused a bacteria infection in someone and they had to stop treatment.
Tom
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- November 22, 2015 at 12:02 am
Ellen
Like I mentioned I am on the same drug as you and have very similar allergic reactions as you do. It seems for no reason my lips will swell and tingle. It is called histamine intolerance. I can eat dinner and my lips will swell. I will eat the left overs the next day and no problem as well as vice versa. I can cut the grass and my lips and eyes will swell. My dog can lick me and my lips swell. Look up candida yeast infection. I have an epi pen benadryl and alleges by my side all the time.
This week Wednesday I had CT scans and I felt odd after. Dizzy and depressed. Then I had my infusion of NIVO. The next day I had back pain and a swollen lip. Today Saturday I had a rash on my side under my arm. I can not explain any of this. Some is a side effect from the chemo some is just allergies. I do not know if the NIVO can increase the histamine intolerance or not but my lips have swelled 3 time soon after an infusion.
If you learn anything that my cause this please let me know. I also read in a recent post Keytuda caused a bacteria infection in someone and they had to stop treatment.
Tom
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