› Forums › General Melanoma Community › Keytruda / Pembro – Infusion-Related Side Effects
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killmel.
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- February 20, 2015 at 1:47 pm
I had my first infusion of Keytruda / pembro yesterday. I didn't see much on the forum on infusion-related side effects, so I thought I would post my experience. The infusion itself was fine–30 minutes from the time the bag starts flowing (versus 90 minutes for ipi). Shortly after the infusion, I began to feel tired. (I would get this same effect from ipi.) I napped for about an hour and then awoke with nausea, stomach churning and chills. Shortly thereafter, I had a bout of diarrhea that had me concerned enough to contact my onc's office. (I had colitis while on ipi.) I took one Lomotil and my stomach settled down within a few hours (~8 hours after the infusion). This morning I'm feeling fine. I have some residual tiredness, but it seems that my GI issues have settled down (hopefully not jinxing myself). Apparently infusion-related side effects are more common with Keytruda than ipi. Hope this proves useful.
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- February 20, 2015 at 2:55 pm
Just like you Mat, yesterday I had my first Keytrudra infusion. I'm feeling a little tired but I'm also experiencing a headache, just like I was having when I did ipi. Oher than that, I can say I feel pretty good, so far. I took the day off from work yesterday but I'm back today. Hopefully we won't have any really bad side effects.
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- February 20, 2015 at 2:55 pm
Just like you Mat, yesterday I had my first Keytrudra infusion. I'm feeling a little tired but I'm also experiencing a headache, just like I was having when I did ipi. Oher than that, I can say I feel pretty good, so far. I took the day off from work yesterday but I'm back today. Hopefully we won't have any really bad side effects.
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- February 20, 2015 at 2:55 pm
Just like you Mat, yesterday I had my first Keytrudra infusion. I'm feeling a little tired but I'm also experiencing a headache, just like I was having when I did ipi. Oher than that, I can say I feel pretty good, so far. I took the day off from work yesterday but I'm back today. Hopefully we won't have any really bad side effects.
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- February 20, 2015 at 3:52 pm
Hey Mat,
Glad things went well and from what I've continued to read and experienced myself in my 2 1/2 years of Nivo (Opdivo) infusions they usually do. Some of the more immediate reactions I experienced were:
A strange taste and dryness in my mouth within an hour post infusion (the nurses knew about it…some of the patients said it tasted and smelled like canned corn…and I did go on to develop some mouth ulcers later….not sure that had anything to do with that pretty immediate response). Drinking bottled lemonade on the way back to the airport helped. Don't know why…just did. The nurses felt that the taste/smell sensation was related to the preservative that was in the fluid. Not sure that they use the same one with Keytruda.
A fair bit of joint pain. About 4 hours later, I would often be limping due to ankle or knee pain. However it is hard for me to parse this out as I was also getting vaccine injections in my thigh that were fairly painful.
About a year or so into the process, I would frequently develop, while getting the infusion, a singular itchy spot of urticaria (hives) on my face. Some folks premedicate with benadryl to avoid this.
There was of course the tiredness, intermittent wheeziness and a transient itchy rash….not urticaria necessarily…more like random itchy bumps that were here and there….often chest and back…and these were within days of the infusion, not during the immediate infusion.
You may have seen these already. But here are two posts I put together regarding side effects from the literature…not my personal experience:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
Here is a long and BORING post I put together from my own experiences….the only value I see in it…and the reason I did it…was to catalogue WHEN in the process I started experiencing WHAT. In reviewing all my stories about my trips to Tampa for the infusion, I was able to put together a time line. It is all the predictable stuff….but when I looked back, I found they started sooner than what I had remembered.
Finally, this is the published report on the participants in my Nivo/Peptide vaccine trial for NED patients. Obviously, it covers many things…but side effects as well.
Hope your side effects remain minimal and I wish you great success!!! celeste
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- February 20, 2015 at 3:52 pm
Hey Mat,
Glad things went well and from what I've continued to read and experienced myself in my 2 1/2 years of Nivo (Opdivo) infusions they usually do. Some of the more immediate reactions I experienced were:
A strange taste and dryness in my mouth within an hour post infusion (the nurses knew about it…some of the patients said it tasted and smelled like canned corn…and I did go on to develop some mouth ulcers later….not sure that had anything to do with that pretty immediate response). Drinking bottled lemonade on the way back to the airport helped. Don't know why…just did. The nurses felt that the taste/smell sensation was related to the preservative that was in the fluid. Not sure that they use the same one with Keytruda.
A fair bit of joint pain. About 4 hours later, I would often be limping due to ankle or knee pain. However it is hard for me to parse this out as I was also getting vaccine injections in my thigh that were fairly painful.
About a year or so into the process, I would frequently develop, while getting the infusion, a singular itchy spot of urticaria (hives) on my face. Some folks premedicate with benadryl to avoid this.
There was of course the tiredness, intermittent wheeziness and a transient itchy rash….not urticaria necessarily…more like random itchy bumps that were here and there….often chest and back…and these were within days of the infusion, not during the immediate infusion.
You may have seen these already. But here are two posts I put together regarding side effects from the literature…not my personal experience:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
Here is a long and BORING post I put together from my own experiences….the only value I see in it…and the reason I did it…was to catalogue WHEN in the process I started experiencing WHAT. In reviewing all my stories about my trips to Tampa for the infusion, I was able to put together a time line. It is all the predictable stuff….but when I looked back, I found they started sooner than what I had remembered.
Finally, this is the published report on the participants in my Nivo/Peptide vaccine trial for NED patients. Obviously, it covers many things…but side effects as well.
Hope your side effects remain minimal and I wish you great success!!! celeste
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- February 20, 2015 at 3:52 pm
Hey Mat,
Glad things went well and from what I've continued to read and experienced myself in my 2 1/2 years of Nivo (Opdivo) infusions they usually do. Some of the more immediate reactions I experienced were:
A strange taste and dryness in my mouth within an hour post infusion (the nurses knew about it…some of the patients said it tasted and smelled like canned corn…and I did go on to develop some mouth ulcers later….not sure that had anything to do with that pretty immediate response). Drinking bottled lemonade on the way back to the airport helped. Don't know why…just did. The nurses felt that the taste/smell sensation was related to the preservative that was in the fluid. Not sure that they use the same one with Keytruda.
A fair bit of joint pain. About 4 hours later, I would often be limping due to ankle or knee pain. However it is hard for me to parse this out as I was also getting vaccine injections in my thigh that were fairly painful.
About a year or so into the process, I would frequently develop, while getting the infusion, a singular itchy spot of urticaria (hives) on my face. Some folks premedicate with benadryl to avoid this.
There was of course the tiredness, intermittent wheeziness and a transient itchy rash….not urticaria necessarily…more like random itchy bumps that were here and there….often chest and back…and these were within days of the infusion, not during the immediate infusion.
You may have seen these already. But here are two posts I put together regarding side effects from the literature…not my personal experience:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
Here is a long and BORING post I put together from my own experiences….the only value I see in it…and the reason I did it…was to catalogue WHEN in the process I started experiencing WHAT. In reviewing all my stories about my trips to Tampa for the infusion, I was able to put together a time line. It is all the predictable stuff….but when I looked back, I found they started sooner than what I had remembered.
Finally, this is the published report on the participants in my Nivo/Peptide vaccine trial for NED patients. Obviously, it covers many things…but side effects as well.
Hope your side effects remain minimal and I wish you great success!!! celeste
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- February 20, 2015 at 11:15 pm
I did ok with first 2 infusions. But after the 3rd infusion , I had to go to the emergency room and was hospitalized for 8 days due to severe side effects.
Pancreatitis was the main reaction and I also had moderate internal bleeding at 3 tumor sites .
It was a very painful experience and I was in serious condition for 3 days. I couldnt drink or eat by mouth and was unable to go to the bathroom for several days.
I got home around a week ago and I am doing much better now. I will not be able to continue the Keytruda due to the pancreatitis.
Shane
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- February 21, 2015 at 10:53 pm
I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose). I've actually gone on 8 mile hikes immediately following an infusion. I have had reactions but those took several days or to appear and may not have been related to the actual infusion. Everyone is different.
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- February 21, 2015 at 10:53 pm
I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose). I've actually gone on 8 mile hikes immediately following an infusion. I have had reactions but those took several days or to appear and may not have been related to the actual infusion. Everyone is different.
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- February 21, 2015 at 10:53 pm
I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose). I've actually gone on 8 mile hikes immediately following an infusion. I have had reactions but those took several days or to appear and may not have been related to the actual infusion. Everyone is different.
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- February 21, 2015 at 10:54 pm
I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose). I've actually gone on 8 mile hikes immediately following an infusion. I have had reactions but those took several days or so to appear and may not have been related to the actual infusion. Everyone is different.
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- February 21, 2015 at 10:54 pm
I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose). I've actually gone on 8 mile hikes immediately following an infusion. I have had reactions but those took several days or so to appear and may not have been related to the actual infusion. Everyone is different.
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- February 21, 2015 at 10:54 pm
I've been in the clinical trial for Keytruda for almost 3 years now and have never had any side effects following an infusion which I get every 2 weeks at 10 mg/kg of body weight (highest dose). I've actually gone on 8 mile hikes immediately following an infusion. I have had reactions but those took several days or so to appear and may not have been related to the actual infusion. Everyone is different.
-
- February 20, 2015 at 11:15 pm
I did ok with first 2 infusions. But after the 3rd infusion , I had to go to the emergency room and was hospitalized for 8 days due to severe side effects.
Pancreatitis was the main reaction and I also had moderate internal bleeding at 3 tumor sites .
It was a very painful experience and I was in serious condition for 3 days. I couldnt drink or eat by mouth and was unable to go to the bathroom for several days.
I got home around a week ago and I am doing much better now. I will not be able to continue the Keytruda due to the pancreatitis.
Shane
-
- February 20, 2015 at 11:15 pm
I did ok with first 2 infusions. But after the 3rd infusion , I had to go to the emergency room and was hospitalized for 8 days due to severe side effects.
Pancreatitis was the main reaction and I also had moderate internal bleeding at 3 tumor sites .
It was a very painful experience and I was in serious condition for 3 days. I couldnt drink or eat by mouth and was unable to go to the bathroom for several days.
I got home around a week ago and I am doing much better now. I will not be able to continue the Keytruda due to the pancreatitis.
Shane
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- February 22, 2015 at 2:38 pm
Hi Mat,
Had the same reaction after the first dose of Ipilimumab. Most probably due to the antihistamine that was administered before that infusion. Tiredness, a strong appetite and 24 hours later a severe fever I had so surppress with paracetamol. Next morning it was gone.
Ben
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- February 22, 2015 at 2:38 pm
Hi Mat,
Had the same reaction after the first dose of Ipilimumab. Most probably due to the antihistamine that was administered before that infusion. Tiredness, a strong appetite and 24 hours later a severe fever I had so surppress with paracetamol. Next morning it was gone.
Ben
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- February 22, 2015 at 2:38 pm
Hi Mat,
Had the same reaction after the first dose of Ipilimumab. Most probably due to the antihistamine that was administered before that infusion. Tiredness, a strong appetite and 24 hours later a severe fever I had so surppress with paracetamol. Next morning it was gone.
Ben
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