› Forums › General Melanoma Community › How long on Yervoy before you experienced side effects?
- This topic has 49 replies, 10 voices, and was last updated 4 years, 7 months ago by
chipgoodhue.
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- November 21, 2014 at 8:56 pm
My first side affect was after the 2nd dose. A little bit of rash. A little stomach churning that would come and go. A little fever (101) that would come and go. I also felt like I had a lot more energy. Pretty much same after 3rd dose. After 4th dose just the rash was still happening which was minor. They didn't need to do any medication or anything. So for me it was really a no big deal treatment although I read lots about it before and was sooo scared. Found out later most of what I read was from the trials where they got like triple the dosage and lots more doses and things. So yeah everyone is different but for me it was way easy. They told me to report any side affect that lasts more than 24 hours but you might want to report everything right away especially stomach pains or throwing up. Even at the FDA approved dose it has been known to cause serious problems in some people.
Artie
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- November 21, 2014 at 8:56 pm
My first side affect was after the 2nd dose. A little bit of rash. A little stomach churning that would come and go. A little fever (101) that would come and go. I also felt like I had a lot more energy. Pretty much same after 3rd dose. After 4th dose just the rash was still happening which was minor. They didn't need to do any medication or anything. So for me it was really a no big deal treatment although I read lots about it before and was sooo scared. Found out later most of what I read was from the trials where they got like triple the dosage and lots more doses and things. So yeah everyone is different but for me it was way easy. They told me to report any side affect that lasts more than 24 hours but you might want to report everything right away especially stomach pains or throwing up. Even at the FDA approved dose it has been known to cause serious problems in some people.
Artie
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- November 21, 2014 at 8:56 pm
My first side affect was after the 2nd dose. A little bit of rash. A little stomach churning that would come and go. A little fever (101) that would come and go. I also felt like I had a lot more energy. Pretty much same after 3rd dose. After 4th dose just the rash was still happening which was minor. They didn't need to do any medication or anything. So for me it was really a no big deal treatment although I read lots about it before and was sooo scared. Found out later most of what I read was from the trials where they got like triple the dosage and lots more doses and things. So yeah everyone is different but for me it was way easy. They told me to report any side affect that lasts more than 24 hours but you might want to report everything right away especially stomach pains or throwing up. Even at the FDA approved dose it has been known to cause serious problems in some people.
Artie
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- November 21, 2014 at 9:54 pm
Hey Jewel,
Trust Ipi will be the cure you and your husband are looking for.
For me, I was basically fine after my first and second infusion. I was a little fatigued and had a slight headache, but over all no significant problems. After my third infusion, I had GI issues, fatigue, spike through the head-headache, "arthritis-like" pain in small joints and a rash, that my dr and I were easily able to deal with. Now almost a year later, I don't have any lingering problems.
Praying this will work for you too!
Julie
Stage 3c: WLE; SNB; LND; HD-INF; GM-CSF; IPI = NED
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- November 21, 2014 at 9:54 pm
Hey Jewel,
Trust Ipi will be the cure you and your husband are looking for.
For me, I was basically fine after my first and second infusion. I was a little fatigued and had a slight headache, but over all no significant problems. After my third infusion, I had GI issues, fatigue, spike through the head-headache, "arthritis-like" pain in small joints and a rash, that my dr and I were easily able to deal with. Now almost a year later, I don't have any lingering problems.
Praying this will work for you too!
Julie
Stage 3c: WLE; SNB; LND; HD-INF; GM-CSF; IPI = NED
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- November 21, 2014 at 9:54 pm
Hey Jewel,
Trust Ipi will be the cure you and your husband are looking for.
For me, I was basically fine after my first and second infusion. I was a little fatigued and had a slight headache, but over all no significant problems. After my third infusion, I had GI issues, fatigue, spike through the head-headache, "arthritis-like" pain in small joints and a rash, that my dr and I were easily able to deal with. Now almost a year later, I don't have any lingering problems.
Praying this will work for you too!
Julie
Stage 3c: WLE; SNB; LND; HD-INF; GM-CSF; IPI = NED
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- November 22, 2014 at 5:16 am
My husband developed the rash after the second infusion and the diarrhea after the third. He was on 10 mg ipi as part of a clinical trial. His symptoms were managed with Benadryl and immodium. We modified his diet also. You can read my posts for more specifics. Good luck band it is very manageable
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- November 22, 2014 at 5:16 am
My husband developed the rash after the second infusion and the diarrhea after the third. He was on 10 mg ipi as part of a clinical trial. His symptoms were managed with Benadryl and immodium. We modified his diet also. You can read my posts for more specifics. Good luck band it is very manageable
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- November 22, 2014 at 5:16 am
My husband developed the rash after the second infusion and the diarrhea after the third. He was on 10 mg ipi as part of a clinical trial. His symptoms were managed with Benadryl and immodium. We modified his diet also. You can read my posts for more specifics. Good luck band it is very manageable
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- November 22, 2014 at 12:50 pm
Everyone will be different, but the most common side effects have been mentioned here: fatigue, rash and itch, diarrhea; and even so, there's no guarantee that he'll experience any of them or when, could be first dose, last dose, or never. I had some fatigue that started more after the second dose and was cumulative, i.e. It seemed to be s little worse after each subsequent dose. But at its worst, it wasn't ever debilitating and lasted a day or two, along with a milder sense of fatigue that was manageable. By the end, I also had a very mild rash on my torso that didn't require any treatment.
Based on the potential for the common side-effects, we had Benadryl (pills) and Immodium (pills) on hand, but could have easily run to the store to get them if needed (I didn't). In other threads, I've read a few recommendations to proactively have a prescription on hand for prednisone — I don't think there's anything wrong with asking your oncologist about that, but at the same time, it's something for which a prescription can easily be filled if needed. If you're oncologist isn't accessible at certain times or days or a pharmacy is inconvenient because of distance or something, then perhaps having a prescription slip or even a filled prescription on hand just in case is probably worthwhile.
Best wishes for your husband's treatment, Joe
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- November 22, 2014 at 12:50 pm
Everyone will be different, but the most common side effects have been mentioned here: fatigue, rash and itch, diarrhea; and even so, there's no guarantee that he'll experience any of them or when, could be first dose, last dose, or never. I had some fatigue that started more after the second dose and was cumulative, i.e. It seemed to be s little worse after each subsequent dose. But at its worst, it wasn't ever debilitating and lasted a day or two, along with a milder sense of fatigue that was manageable. By the end, I also had a very mild rash on my torso that didn't require any treatment.
Based on the potential for the common side-effects, we had Benadryl (pills) and Immodium (pills) on hand, but could have easily run to the store to get them if needed (I didn't). In other threads, I've read a few recommendations to proactively have a prescription on hand for prednisone — I don't think there's anything wrong with asking your oncologist about that, but at the same time, it's something for which a prescription can easily be filled if needed. If you're oncologist isn't accessible at certain times or days or a pharmacy is inconvenient because of distance or something, then perhaps having a prescription slip or even a filled prescription on hand just in case is probably worthwhile.
Best wishes for your husband's treatment, Joe
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- November 22, 2014 at 12:50 pm
Everyone will be different, but the most common side effects have been mentioned here: fatigue, rash and itch, diarrhea; and even so, there's no guarantee that he'll experience any of them or when, could be first dose, last dose, or never. I had some fatigue that started more after the second dose and was cumulative, i.e. It seemed to be s little worse after each subsequent dose. But at its worst, it wasn't ever debilitating and lasted a day or two, along with a milder sense of fatigue that was manageable. By the end, I also had a very mild rash on my torso that didn't require any treatment.
Based on the potential for the common side-effects, we had Benadryl (pills) and Immodium (pills) on hand, but could have easily run to the store to get them if needed (I didn't). In other threads, I've read a few recommendations to proactively have a prescription on hand for prednisone — I don't think there's anything wrong with asking your oncologist about that, but at the same time, it's something for which a prescription can easily be filled if needed. If you're oncologist isn't accessible at certain times or days or a pharmacy is inconvenient because of distance or something, then perhaps having a prescription slip or even a filled prescription on hand just in case is probably worthwhile.
Best wishes for your husband's treatment, Joe
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- November 22, 2014 at 6:09 pm
It's hard to say for sure. I had Yervoy a couple of months following a craniotomy and CyberKnife stereotactic radiation for a brain tumor, and I had IL-2 and TIL a couple of years prior to that. Going into Yervoy, my tumor burden was very low, I had a small leg bone met that was stable and had been radiated a few years prior and a small lung met that was also relatively stable but which we eventually decided to radiate. I've had some complications resulting from earlier metastases and treatments, but I haven't had any new metastases in the 18 months since Yervoy — whether that's the Yervoy or a combination of prior treatments and procedures, we won't ever know for sure.
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- November 22, 2014 at 6:09 pm
It's hard to say for sure. I had Yervoy a couple of months following a craniotomy and CyberKnife stereotactic radiation for a brain tumor, and I had IL-2 and TIL a couple of years prior to that. Going into Yervoy, my tumor burden was very low, I had a small leg bone met that was stable and had been radiated a few years prior and a small lung met that was also relatively stable but which we eventually decided to radiate. I've had some complications resulting from earlier metastases and treatments, but I haven't had any new metastases in the 18 months since Yervoy — whether that's the Yervoy or a combination of prior treatments and procedures, we won't ever know for sure.
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- November 22, 2014 at 6:09 pm
It's hard to say for sure. I had Yervoy a couple of months following a craniotomy and CyberKnife stereotactic radiation for a brain tumor, and I had IL-2 and TIL a couple of years prior to that. Going into Yervoy, my tumor burden was very low, I had a small leg bone met that was stable and had been radiated a few years prior and a small lung met that was also relatively stable but which we eventually decided to radiate. I've had some complications resulting from earlier metastases and treatments, but I haven't had any new metastases in the 18 months since Yervoy — whether that's the Yervoy or a combination of prior treatments and procedures, we won't ever know for sure.
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- November 22, 2014 at 8:59 pm
Joe,
Sorry you have had to go through so much to get where your at today. Like you said it is hard to tell which one or combo of therapies have held you stable. Congratulation on 18 months! My husband went into this with resected disease, I can only hope it works. Best to you
Jewel
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- November 22, 2014 at 8:59 pm
Joe,
Sorry you have had to go through so much to get where your at today. Like you said it is hard to tell which one or combo of therapies have held you stable. Congratulation on 18 months! My husband went into this with resected disease, I can only hope it works. Best to you
Jewel
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- November 22, 2014 at 8:59 pm
Joe,
Sorry you have had to go through so much to get where your at today. Like you said it is hard to tell which one or combo of therapies have held you stable. Congratulation on 18 months! My husband went into this with resected disease, I can only hope it works. Best to you
Jewel
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- November 22, 2014 at 8:42 pm
Jewel,
I had rash two weeks after the first infusion. I actually thought it was poison oak but it was a side effect from the Yervoy. The Dr. said it was a good sign showing the medicine is working in making the immune system hypersensitive which creates the rash. I had 4 infusions of Yervoy and that was my only side effect.
I hope this helps and keep strong!
Chris
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- November 22, 2014 at 8:42 pm
Jewel,
I had rash two weeks after the first infusion. I actually thought it was poison oak but it was a side effect from the Yervoy. The Dr. said it was a good sign showing the medicine is working in making the immune system hypersensitive which creates the rash. I had 4 infusions of Yervoy and that was my only side effect.
I hope this helps and keep strong!
Chris
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- November 22, 2014 at 8:42 pm
Jewel,
I had rash two weeks after the first infusion. I actually thought it was poison oak but it was a side effect from the Yervoy. The Dr. said it was a good sign showing the medicine is working in making the immune system hypersensitive which creates the rash. I had 4 infusions of Yervoy and that was my only side effect.
I hope this helps and keep strong!
Chris
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- November 23, 2014 at 5:29 am
I didn't have any but maybe some fatigue and that might have been from the interferon i did before Yervoy..Good luck, i finished Aug 13, scans in sept. so far it's working, scans again in Dec..Good luck
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- November 23, 2014 at 5:29 am
I didn't have any but maybe some fatigue and that might have been from the interferon i did before Yervoy..Good luck, i finished Aug 13, scans in sept. so far it's working, scans again in Dec..Good luck
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- November 23, 2014 at 5:29 am
I didn't have any but maybe some fatigue and that might have been from the interferon i did before Yervoy..Good luck, i finished Aug 13, scans in sept. so far it's working, scans again in Dec..Good luck
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- November 26, 2014 at 5:37 am
Hi Jewel,
Right after my first dose my wife and I took off for Hawaii for a week. I am sure one of the Dr.'s told me to avoid sun but I never heard it. Yeah I slathered up with 110 spf (although at this point that seems kind of silly) and stayed in the shade a lot. But by the end of the trip I was itching badly. I called my onc who said something like: "Hmm, your in Hawaii right, are you staying out of the sun?". Oops. Itching went away once I strarted behaving myself.
After the second bag I started getting headaches. For the first few weeks I was ok with ibuprofin, but eventually they got constant and I requried oxycodone. My testosterone dropped to 5% of normal and my onc ordered a brain MRI which revealed an inflamed pituitary. Apparently 17% of the people who received ipi in a clinical trial experienced such inflamation. I started prednisone treatment today to see if it helps. That required that both my onc and endocrinologist work together, since I am a diabetic and steroids cause diabetic's blood sugars to skyrocket. I have been lightheaded and a little dizzy today, but the headache has been gone all day without any meds.
I get my fourth and final bag of ipi tomorrow.
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- July 22, 2020 at 5:07 pm
My Wife Rose may have been a poster child for Ipi side effects. After 3rd dose of combined Nivo/IPI, she had:
Full body rashes
Searing headaches/inflamed pituitary
Sudden onset motor and cognitive deficits, eventually traced to immumo-induced CSF inflammation/meningitis (this part was scary, lumbar punctures, long waits to rule out leptomeningeal melanoma, which aint good).
Liver inflammation/hepatitisGood news is her docs were all over this and manged these side effects well.
She never had the 4th dose. Her tumors progressed throughout the treatment, but after switching to BRAF/MEK, there is some indication now that perhaps she is seeing a delayed Nivo/IPp response.
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- November 26, 2014 at 5:37 am
Hi Jewel,
Right after my first dose my wife and I took off for Hawaii for a week. I am sure one of the Dr.'s told me to avoid sun but I never heard it. Yeah I slathered up with 110 spf (although at this point that seems kind of silly) and stayed in the shade a lot. But by the end of the trip I was itching badly. I called my onc who said something like: "Hmm, your in Hawaii right, are you staying out of the sun?". Oops. Itching went away once I strarted behaving myself.
After the second bag I started getting headaches. For the first few weeks I was ok with ibuprofin, but eventually they got constant and I requried oxycodone. My testosterone dropped to 5% of normal and my onc ordered a brain MRI which revealed an inflamed pituitary. Apparently 17% of the people who received ipi in a clinical trial experienced such inflamation. I started prednisone treatment today to see if it helps. That required that both my onc and endocrinologist work together, since I am a diabetic and steroids cause diabetic's blood sugars to skyrocket. I have been lightheaded and a little dizzy today, but the headache has been gone all day without any meds.
I get my fourth and final bag of ipi tomorrow.
-
- November 26, 2014 at 5:37 am
Hi Jewel,
Right after my first dose my wife and I took off for Hawaii for a week. I am sure one of the Dr.'s told me to avoid sun but I never heard it. Yeah I slathered up with 110 spf (although at this point that seems kind of silly) and stayed in the shade a lot. But by the end of the trip I was itching badly. I called my onc who said something like: "Hmm, your in Hawaii right, are you staying out of the sun?". Oops. Itching went away once I strarted behaving myself.
After the second bag I started getting headaches. For the first few weeks I was ok with ibuprofin, but eventually they got constant and I requried oxycodone. My testosterone dropped to 5% of normal and my onc ordered a brain MRI which revealed an inflamed pituitary. Apparently 17% of the people who received ipi in a clinical trial experienced such inflamation. I started prednisone treatment today to see if it helps. That required that both my onc and endocrinologist work together, since I am a diabetic and steroids cause diabetic's blood sugars to skyrocket. I have been lightheaded and a little dizzy today, but the headache has been gone all day without any meds.
I get my fourth and final bag of ipi tomorrow.
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