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Keytruda side effect?
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Keytruda side effect?

› Forums › General Melanoma Community › Keytruda side effect?

  • Post
    • December 15, 2014 at 6:36 pm
    Nadia
    Participant

      My husband is on Keytruda, he already had 7 infusions, and we are two weeks away from the second CTscan and so far, so good, he had 20% to 50% tumour shrinkage.  He had several side effects, the most common ones being fatigue, sore joints, itchy skin, rashes, and we were able to keep all of then under control without going to the hospital, with only otc drugs.  But 2 days ago he started to develop some sores on his tongue, they are very painful, no bleeding yet, and they look like raw meat. 

      I was wondering if anybody else on Keytruda experienced this, and how did you manage it?  Is there any type of treatment, like a mouth rinse or ointment that we can get from a drug store to make the sores go away, or at least to make the pain manageable.

      Thank you!

    Viewing 11 reply threads
    • Replies
        • December 16, 2014 at 12:58 am
        BrianP
        Participant

          Hey Nadia,

          I remember Celeste talking about that side effect on her blog.  I think it's a rare one but it does happen.  Not sure if she found anything to help it or not.  Hopefully she'll chime in shortly.  She talks about it a couple times in the link below. Good luck.

          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

          • December 16, 2014 at 12:58 am
          BrianP
          Participant

            Hey Nadia,

            I remember Celeste talking about that side effect on her blog.  I think it's a rare one but it does happen.  Not sure if she found anything to help it or not.  Hopefully she'll chime in shortly.  She talks about it a couple times in the link below. Good luck.

            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

            • December 16, 2014 at 12:58 am
            BrianP
            Participant

              Hey Nadia,

              I remember Celeste talking about that side effect on her blog.  I think it's a rare one but it does happen.  Not sure if she found anything to help it or not.  Hopefully she'll chime in shortly.  She talks about it a couple times in the link below. Good luck.

              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

              • December 16, 2014 at 2:09 am
              Bubbles
              Participant

                Hey Nadia,

                Think I may have answered this in another forum…but it might help others out there.  As Brian mentioned, I have dealt with rashes, wheezing, arthralgias, vitiligo and mouth ulcers as well as some fatigue from my Nivo trial.  Not to make it sound like it was awful…worked full time…only missed three days in 2 1/2 years…but still feel like folks need to know.  Still have the ulcers, mostly to my tongue, in weird fits and starts.  When they are really bad…tooth paste burns…so I found that Tom's toothpaste was the one I could best tolerate….I used baking soda when even that was too much. My sweet dentist had some lidocaine lollipops compounded for me….but I woke up in the night after using them with heart palpitations….was really confused by them at first, but then realized…"Oh, my lidocaine!!!" I tried nystatin suspension…that was a waste of time and money…I knew it wasn't yeasty….but thought I'd try it…just made things gooey and worse. I guess the best rinse for comfort was actually glyoxide, which you can buy at the drug store and swish with a bit of water. It was no cure, but, along with warm saline rinses did make things feel a bit better. Lidocaine pops or "magic mouthwash" are helpful for many but the heart racing thing made it unpleasant for me…though I don't think everyone is that sensitive to it. When things got really bad once…and had been so for several months…my dentist had a fit and prescribed Chlorhexidine 0.12% rinse. This is used after some dental procedures and is an antibiotic rinse. It did help some for that particular flare (it is possible it had gone on so long that I did have a secondary bacterial infection going on…but you have to remember that the origin is an immune response just like colitis in the gut….it is one long tube after all!) but I don't think all lesions need an antibiotic wash. Also, this particular rinse stains your teeth pretty badly! Worth it if you need it…but… There is also an over the counter med….Orabase….a Colgate product….that is 20% benzocaine….a paste applied to the lesions for comfort. I haven't tried that, but it may be helpful to others.  Hang in there. Here's a couple posts dealing with my latest 'tadah' and some recent info on arthralgias in post anti-PD1 patients.  Sadly, driving home from work this evening…suddenly realized as my tongue accidently touched my teeth and hurt like the blazes…."They're BAAACK!!!", but hopefully not too bad or for too long.. (but what a miracle to be able to say "post" anti-PD1, huh???)

                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/colonoscopy-done-feeling-bit-better.html

                wishing you all my best…c

                 

                • December 16, 2014 at 2:09 am
                Bubbles
                Participant

                  Hey Nadia,

                  Think I may have answered this in another forum…but it might help others out there.  As Brian mentioned, I have dealt with rashes, wheezing, arthralgias, vitiligo and mouth ulcers as well as some fatigue from my Nivo trial.  Not to make it sound like it was awful…worked full time…only missed three days in 2 1/2 years…but still feel like folks need to know.  Still have the ulcers, mostly to my tongue, in weird fits and starts.  When they are really bad…tooth paste burns…so I found that Tom's toothpaste was the one I could best tolerate….I used baking soda when even that was too much. My sweet dentist had some lidocaine lollipops compounded for me….but I woke up in the night after using them with heart palpitations….was really confused by them at first, but then realized…"Oh, my lidocaine!!!" I tried nystatin suspension…that was a waste of time and money…I knew it wasn't yeasty….but thought I'd try it…just made things gooey and worse. I guess the best rinse for comfort was actually glyoxide, which you can buy at the drug store and swish with a bit of water. It was no cure, but, along with warm saline rinses did make things feel a bit better. Lidocaine pops or "magic mouthwash" are helpful for many but the heart racing thing made it unpleasant for me…though I don't think everyone is that sensitive to it. When things got really bad once…and had been so for several months…my dentist had a fit and prescribed Chlorhexidine 0.12% rinse. This is used after some dental procedures and is an antibiotic rinse. It did help some for that particular flare (it is possible it had gone on so long that I did have a secondary bacterial infection going on…but you have to remember that the origin is an immune response just like colitis in the gut….it is one long tube after all!) but I don't think all lesions need an antibiotic wash. Also, this particular rinse stains your teeth pretty badly! Worth it if you need it…but… There is also an over the counter med….Orabase….a Colgate product….that is 20% benzocaine….a paste applied to the lesions for comfort. I haven't tried that, but it may be helpful to others.  Hang in there. Here's a couple posts dealing with my latest 'tadah' and some recent info on arthralgias in post anti-PD1 patients.  Sadly, driving home from work this evening…suddenly realized as my tongue accidently touched my teeth and hurt like the blazes…."They're BAAACK!!!", but hopefully not too bad or for too long.. (but what a miracle to be able to say "post" anti-PD1, huh???)

                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/colonoscopy-done-feeling-bit-better.html

                  wishing you all my best…c

                   

                  • December 16, 2014 at 2:09 am
                  Bubbles
                  Participant

                    Hey Nadia,

                    Think I may have answered this in another forum…but it might help others out there.  As Brian mentioned, I have dealt with rashes, wheezing, arthralgias, vitiligo and mouth ulcers as well as some fatigue from my Nivo trial.  Not to make it sound like it was awful…worked full time…only missed three days in 2 1/2 years…but still feel like folks need to know.  Still have the ulcers, mostly to my tongue, in weird fits and starts.  When they are really bad…tooth paste burns…so I found that Tom's toothpaste was the one I could best tolerate….I used baking soda when even that was too much. My sweet dentist had some lidocaine lollipops compounded for me….but I woke up in the night after using them with heart palpitations….was really confused by them at first, but then realized…"Oh, my lidocaine!!!" I tried nystatin suspension…that was a waste of time and money…I knew it wasn't yeasty….but thought I'd try it…just made things gooey and worse. I guess the best rinse for comfort was actually glyoxide, which you can buy at the drug store and swish with a bit of water. It was no cure, but, along with warm saline rinses did make things feel a bit better. Lidocaine pops or "magic mouthwash" are helpful for many but the heart racing thing made it unpleasant for me…though I don't think everyone is that sensitive to it. When things got really bad once…and had been so for several months…my dentist had a fit and prescribed Chlorhexidine 0.12% rinse. This is used after some dental procedures and is an antibiotic rinse. It did help some for that particular flare (it is possible it had gone on so long that I did have a secondary bacterial infection going on…but you have to remember that the origin is an immune response just like colitis in the gut….it is one long tube after all!) but I don't think all lesions need an antibiotic wash. Also, this particular rinse stains your teeth pretty badly! Worth it if you need it…but… There is also an over the counter med….Orabase….a Colgate product….that is 20% benzocaine….a paste applied to the lesions for comfort. I haven't tried that, but it may be helpful to others.  Hang in there. Here's a couple posts dealing with my latest 'tadah' and some recent info on arthralgias in post anti-PD1 patients.  Sadly, driving home from work this evening…suddenly realized as my tongue accidently touched my teeth and hurt like the blazes…."They're BAAACK!!!", but hopefully not too bad or for too long.. (but what a miracle to be able to say "post" anti-PD1, huh???)

                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/colonoscopy-done-feeling-bit-better.html

                    wishing you all my best…c

                     

                    • December 16, 2014 at 11:33 am
                    Patina
                    Participant
                      My Mom had something like this, but was taking Yerovy. In her case she had thrush and it started as you described. It took a while for someone to diagnose it and she was beyond miserable.

                      She often says that it was the thrush that almost killed her and not the cancer its that bad.

                      Have this ruled out.

                      • December 16, 2014 at 11:33 am
                      Patina
                      Participant
                        My Mom had something like this, but was taking Yerovy. In her case she had thrush and it started as you described. It took a while for someone to diagnose it and she was beyond miserable.

                        She often says that it was the thrush that almost killed her and not the cancer its that bad.

                        Have this ruled out.

                        • December 16, 2014 at 11:33 am
                        Patina
                        Participant
                          My Mom had something like this, but was taking Yerovy. In her case she had thrush and it started as you described. It took a while for someone to diagnose it and she was beyond miserable.

                          She often says that it was the thrush that almost killed her and not the cancer its that bad.

                          Have this ruled out.

                          • December 16, 2014 at 5:00 pm
                          Nadia
                          Participant

                            Thank you very much for your responses, he will see his Derm today (his every 3 months skin check) and ask, but also I will contact his onc and see what his opinion is.  It is painful and unpleaseant, but what a small price to pay for access to Keytruda!

                            • December 16, 2014 at 5:00 pm
                            Nadia
                            Participant

                              Thank you very much for your responses, he will see his Derm today (his every 3 months skin check) and ask, but also I will contact his onc and see what his opinion is.  It is painful and unpleaseant, but what a small price to pay for access to Keytruda!

                              • December 16, 2014 at 5:00 pm
                              Nadia
                              Participant

                                Thank you very much for your responses, he will see his Derm today (his every 3 months skin check) and ask, but also I will contact his onc and see what his opinion is.  It is painful and unpleaseant, but what a small price to pay for access to Keytruda!

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