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keytruda and swelling

Forums General Melanoma Community keytruda and swelling

  • Post
    csellers23
    Participant
      My husband has had one round of keytruda. I noticed what i thought was a bruise on his ankle. Now both ankles are swollen and the bottom of his feet are red it happen fast. It hurt so bad he couldnt walk. I gave him one ibuprofen but cant give him much due to brain mets.has this happen to anyone? If so how long did it last and did they give you any meds to take it away? Also his joints hurt all over. How long did that last for you? Thank you all.
    Viewing 17 reply threads
    • Replies
        Patina
        Participant

          Sounds like you need to call your doctor. 

          Has your husband had any treatment for the brain mets? My Mom had gamma knife with Yervoy with really really good results. She was stage IV and ended up with 25 brain mets.  Heading to NED.

          Patina
          Participant

            Sounds like you need to call your doctor. 

            Has your husband had any treatment for the brain mets? My Mom had gamma knife with Yervoy with really really good results. She was stage IV and ended up with 25 brain mets.  Heading to NED.

              dsfarms13108
              Participant

                i had ankle and feet swelling  on pd1  but the drs only had me elevate my feet and see if that helped -ive been on pd1 for 2 yrs in april  2015 -ive had uveitis -inflammation in eyes -but no major joint pain -i had excruciating debilitating joint pain from zelboraf  to the point i was almost wheelchair bound and my shoulders both froze up -but not on pd1 -eventually  after putting feet up when they were swollen and cutting back on salt intake and increasing water consumption  with the occasional advil  for pain   the swelling subsided .i have 2 brain mets too which were spot radiated almost a year ago and have had shrinkage -i also have trouble with migraines but thats something i had before so im on treatment for them . i hope this helps but you should call his dr and run it by them and they probably will have some sort of help for you -also i was told to try compression stocking s for swelling and see if that would help . you are both in my prayers and i hope he gets some relief soon . stay strong

                shawn

                dsfarms13108
                Participant

                  i had ankle and feet swelling  on pd1  but the drs only had me elevate my feet and see if that helped -ive been on pd1 for 2 yrs in april  2015 -ive had uveitis -inflammation in eyes -but no major joint pain -i had excruciating debilitating joint pain from zelboraf  to the point i was almost wheelchair bound and my shoulders both froze up -but not on pd1 -eventually  after putting feet up when they were swollen and cutting back on salt intake and increasing water consumption  with the occasional advil  for pain   the swelling subsided .i have 2 brain mets too which were spot radiated almost a year ago and have had shrinkage -i also have trouble with migraines but thats something i had before so im on treatment for them . i hope this helps but you should call his dr and run it by them and they probably will have some sort of help for you -also i was told to try compression stocking s for swelling and see if that would help . you are both in my prayers and i hope he gets some relief soon . stay strong

                  shawn

                  dsfarms13108
                  Participant

                    i had ankle and feet swelling  on pd1  but the drs only had me elevate my feet and see if that helped -ive been on pd1 for 2 yrs in april  2015 -ive had uveitis -inflammation in eyes -but no major joint pain -i had excruciating debilitating joint pain from zelboraf  to the point i was almost wheelchair bound and my shoulders both froze up -but not on pd1 -eventually  after putting feet up when they were swollen and cutting back on salt intake and increasing water consumption  with the occasional advil  for pain   the swelling subsided .i have 2 brain mets too which were spot radiated almost a year ago and have had shrinkage -i also have trouble with migraines but thats something i had before so im on treatment for them . i hope this helps but you should call his dr and run it by them and they probably will have some sort of help for you -also i was told to try compression stocking s for swelling and see if that would help . you are both in my prayers and i hope he gets some relief soon . stay strong

                    shawn

                  Patina
                  Participant

                    Sounds like you need to call your doctor. 

                    Has your husband had any treatment for the brain mets? My Mom had gamma knife with Yervoy with really really good results. She was stage IV and ended up with 25 brain mets.  Heading to NED.

                    Owl
                    Participant

                      Dear Crystale,

                      this really sounds like your husband should see a doctor who is familiar with all sort of side effects asap. As you might remember, my husband also had a bad swelling right after the first infusion, but "only" in the tumor areas. From your description I assume there were no tumors found in his ankles or hip, right?

                      Is your husband still taking Tafinlar? I never heard of these side effects with Tafinlar, but it might be rare. My husband had amond others facial paralysis from Zelboraf, he had been through all kind of checks until they ended up with the diagnosis "side effect, but rare". There can always be some kind of rare side effect, but please get it checked. Maybe they can put him on some kind of effective pain med for a while.

                      All the best to you, Jenny

                      Owl
                      Participant

                        Dear Crystale,

                        this really sounds like your husband should see a doctor who is familiar with all sort of side effects asap. As you might remember, my husband also had a bad swelling right after the first infusion, but "only" in the tumor areas. From your description I assume there were no tumors found in his ankles or hip, right?

                        Is your husband still taking Tafinlar? I never heard of these side effects with Tafinlar, but it might be rare. My husband had amond others facial paralysis from Zelboraf, he had been through all kind of checks until they ended up with the diagnosis "side effect, but rare". There can always be some kind of rare side effect, but please get it checked. Maybe they can put him on some kind of effective pain med for a while.

                        All the best to you, Jenny

                        Owl
                        Participant

                          Dear Crystale,

                          this really sounds like your husband should see a doctor who is familiar with all sort of side effects asap. As you might remember, my husband also had a bad swelling right after the first infusion, but "only" in the tumor areas. From your description I assume there were no tumors found in his ankles or hip, right?

                          Is your husband still taking Tafinlar? I never heard of these side effects with Tafinlar, but it might be rare. My husband had amond others facial paralysis from Zelboraf, he had been through all kind of checks until they ended up with the diagnosis "side effect, but rare". There can always be some kind of rare side effect, but please get it checked. Maybe they can put him on some kind of effective pain med for a while.

                          All the best to you, Jenny

                          Jubes
                          Participant

                            See if you can find the post from Bubbles with a link to the side effects of Nivo, which is similar. It was a reply to someone and had three links. The last link is a really good description of the side effects, explaining how the side effects are basically the opposite of the side effects that you get from the immune system suppressing drugs like prednisone. So, for example whereas if you are take something like prednisone to relieve rhuematoid arthritis, pembrolizumab may give you joint pain. But definitely see your doctor as well.

                            Jubes
                            Participant

                              See if you can find the post from Bubbles with a link to the side effects of Nivo, which is similar. It was a reply to someone and had three links. The last link is a really good description of the side effects, explaining how the side effects are basically the opposite of the side effects that you get from the immune system suppressing drugs like prednisone. So, for example whereas if you are take something like prednisone to relieve rhuematoid arthritis, pembrolizumab may give you joint pain. But definitely see your doctor as well.

                              Jubes
                              Participant

                                See if you can find the post from Bubbles with a link to the side effects of Nivo, which is similar. It was a reply to someone and had three links. The last link is a really good description of the side effects, explaining how the side effects are basically the opposite of the side effects that you get from the immune system suppressing drugs like prednisone. So, for example whereas if you are take something like prednisone to relieve rhuematoid arthritis, pembrolizumab may give you joint pain. But definitely see your doctor as well.

                                arthurjedi007
                                Participant

                                  Better let your doc know right away. I get my 14th dose of keytruda tomorrow and have never heard of such a side affect. However that sounds exactly like a side affect my doc talked about when he put me on zelboraf although I did not get that side affect other of his patients did. I'm not sure what he did for them.

                                  Artie

                                  arthurjedi007
                                  Participant

                                    Better let your doc know right away. I get my 14th dose of keytruda tomorrow and have never heard of such a side affect. However that sounds exactly like a side affect my doc talked about when he put me on zelboraf although I did not get that side affect other of his patients did. I'm not sure what he did for them.

                                    Artie

                                    arthurjedi007
                                    Participant

                                      Better let your doc know right away. I get my 14th dose of keytruda tomorrow and have never heard of such a side affect. However that sounds exactly like a side affect my doc talked about when he put me on zelboraf although I did not get that side affect other of his patients did. I'm not sure what he did for them.

                                      Artie

                                      AmandaLivingston
                                      Participant

                                        my husband (stage 4 – diagnosed 8 months ago; on PD-1 for the last 7 months) started with Yervoy – did one treatment then moved quickly to a PD-1 trial at UCSF. His first and second treatments were only about 3 weeks apart and he had really bad side effects during that first PD-1 treatment we think because the Yervoy and PD-1 had a toxic reaction for him. He did have joint pain, nausea, vomitting, really awful flu like symptoms for a few days. Since then he's tolerated PD-1 incredibly well – really no noticeable side effects aside from a bit of tiredness the day or two after treatment but we really attributed the joint pain to the close overlap of the two drugs and not the PD-1 specifically.

                                        Of course it's different for everyone and in the last month he's developed another random side effect – really painful nerve firing when his hands and feet start to sweat. He called it itching at first but it's worse than itching and fires up any time his body heat rises pretty much and topical creams haven't worked. He's tried a few different medications (Gabapentin, Lyrica) to get it under control but no luck so far. No one we've asked has seen this side effect before sometimes with these new drugs unfortunately the patients are the guinea pigs. 

                                        Hope you guys can figure out what it is and make it a manageable side effect. Good luck!

                                        AmandaLivingston
                                        Participant

                                          my husband (stage 4 – diagnosed 8 months ago; on PD-1 for the last 7 months) started with Yervoy – did one treatment then moved quickly to a PD-1 trial at UCSF. His first and second treatments were only about 3 weeks apart and he had really bad side effects during that first PD-1 treatment we think because the Yervoy and PD-1 had a toxic reaction for him. He did have joint pain, nausea, vomitting, really awful flu like symptoms for a few days. Since then he's tolerated PD-1 incredibly well – really no noticeable side effects aside from a bit of tiredness the day or two after treatment but we really attributed the joint pain to the close overlap of the two drugs and not the PD-1 specifically.

                                          Of course it's different for everyone and in the last month he's developed another random side effect – really painful nerve firing when his hands and feet start to sweat. He called it itching at first but it's worse than itching and fires up any time his body heat rises pretty much and topical creams haven't worked. He's tried a few different medications (Gabapentin, Lyrica) to get it under control but no luck so far. No one we've asked has seen this side effect before sometimes with these new drugs unfortunately the patients are the guinea pigs. 

                                          Hope you guys can figure out what it is and make it a manageable side effect. Good luck!

                                          AmandaLivingston
                                          Participant

                                            my husband (stage 4 – diagnosed 8 months ago; on PD-1 for the last 7 months) started with Yervoy – did one treatment then moved quickly to a PD-1 trial at UCSF. His first and second treatments were only about 3 weeks apart and he had really bad side effects during that first PD-1 treatment we think because the Yervoy and PD-1 had a toxic reaction for him. He did have joint pain, nausea, vomitting, really awful flu like symptoms for a few days. Since then he's tolerated PD-1 incredibly well – really no noticeable side effects aside from a bit of tiredness the day or two after treatment but we really attributed the joint pain to the close overlap of the two drugs and not the PD-1 specifically.

                                            Of course it's different for everyone and in the last month he's developed another random side effect – really painful nerve firing when his hands and feet start to sweat. He called it itching at first but it's worse than itching and fires up any time his body heat rises pretty much and topical creams haven't worked. He's tried a few different medications (Gabapentin, Lyrica) to get it under control but no luck so far. No one we've asked has seen this side effect before sometimes with these new drugs unfortunately the patients are the guinea pigs. 

                                            Hope you guys can figure out what it is and make it a manageable side effect. Good luck!

                                              Mat
                                              Participant

                                                Amanda, I've had a similar side effect which I attribute to ipi (I assumed that it is the so-called "ipi itch".)  It is very intense, but, in my case, tends to only last a short time.  I have not taken medication for it.  If your husband finds a solution for it, please post.  Thanks!

                                                Mat
                                                Participant

                                                  Amanda, I've had a similar side effect which I attribute to ipi (I assumed that it is the so-called "ipi itch".)  It is very intense, but, in my case, tends to only last a short time.  I have not taken medication for it.  If your husband finds a solution for it, please post.  Thanks!

                                                  Mat
                                                  Participant

                                                    Amanda, I've had a similar side effect which I attribute to ipi (I assumed that it is the so-called "ipi itch".)  It is very intense, but, in my case, tends to only last a short time.  I have not taken medication for it.  If your husband finds a solution for it, please post.  Thanks!

                                                  Bubbles
                                                  Participant

                                                    Hey Crystale,

                                                    Hoping your husband has spoken with his docs and gotten some relief since you posted but these are the posts I think Jubes was referencing.  Perhaps they will help…

                                                    Side effects of anti-PD1 generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

                                                    Arthritic effects related to anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                                                    Wishing you both my best.  Celeste

                                                     

                                                     

                                                    Bubbles
                                                    Participant

                                                      Hey Crystale,

                                                      Hoping your husband has spoken with his docs and gotten some relief since you posted but these are the posts I think Jubes was referencing.  Perhaps they will help…

                                                      Side effects of anti-PD1 generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

                                                      Arthritic effects related to anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                                                      Wishing you both my best.  Celeste

                                                       

                                                       

                                                        Kdw2012
                                                        Participant

                                                          I have had terrible headaches and leg pain so bad after Yervoy treatments that they prescribed Percocet for and that worked for me, the leg symptoms only last 2-3 days but I was unable to walk without the pain meds. 

                                                          Kdw2012
                                                          Participant

                                                            I have had terrible headaches and leg pain so bad after Yervoy treatments that they prescribed Percocet for and that worked for me, the leg symptoms only last 2-3 days but I was unable to walk without the pain meds. 

                                                            Kdw2012
                                                            Participant

                                                              I have had terrible headaches and leg pain so bad after Yervoy treatments that they prescribed Percocet for and that worked for me, the leg symptoms only last 2-3 days but I was unable to walk without the pain meds. 

                                                            Bubbles
                                                            Participant

                                                              Hey Crystale,

                                                              Hoping your husband has spoken with his docs and gotten some relief since you posted but these are the posts I think Jubes was referencing.  Perhaps they will help…

                                                              Side effects of anti-PD1 generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

                                                              Arthritic effects related to anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                                                              Wishing you both my best.  Celeste

                                                               

                                                               

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