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Keytruda side effects

Forums General Melanoma Community Keytruda side effects

  • Post
    Jubes
    Participant

      Does anybody else on keytruda have terrible mech back and shoulder muscle pain? Thanks

      anne-Louise 

    Viewing 8 reply threads
    • Replies
        Jubes
        Participant

          That's neck! I am on a bus!

          Jubes
          Participant

            That's neck! I am on a bus!

            Jubes
            Participant

              That's neck! I am on a bus!

                Julie in SoCal
                Participant

                  I've only had one dose of Pembro and for the whole week after it I had pain in my lower back knees and shoulders.  I figured this was all od the places where I have arthritis.  Now 2 weeks out, I feel fine and am looking forward to one more good week!

                  shalom 

                  julie

                  Julie in SoCal
                  Participant

                    I've only had one dose of Pembro and for the whole week after it I had pain in my lower back knees and shoulders.  I figured this was all od the places where I have arthritis.  Now 2 weeks out, I feel fine and am looking forward to one more good week!

                    shalom 

                    julie

                    Julie in SoCal
                    Participant

                      I've only had one dose of Pembro and for the whole week after it I had pain in my lower back knees and shoulders.  I figured this was all od the places where I have arthritis.  Now 2 weeks out, I feel fine and am looking forward to one more good week!

                      shalom 

                      julie

                      Twhite00000
                      Participant
                        Stage 4 lung met. I am 4 months post lung surgery which was a major fail no tumor removal due to an inoperable number of small nodules a complete left lung removal would have been the only option. They biopsied a wedge with multiple nodules and they all were melanoma. I opted to try keytrudra and the last scan after three months of treatments shows the tumor that was left in me at surgery to be stable at less than 2cm. I had just gotten back to “normal” felt great actually then just before 4th treatment I started getting neck and shoulder pain. I am on a low dose of prednisone to reduce inflamation but the pain has persisted for three weeks now and has gotten much worse. Did you find a remedy?
                        Twhite00000
                        Participant
                          Stage 4 lung met. I am 4 months post lung surgery which was a major fail no tumor removal due to an inoperable number of small nodules a complete left lung removal would have been the only option. They biopsied a wedge with multiple nodules and they all were melanoma. I opted to try keytrudra and the last scan after three months of treatments shows the tumor that was left in me at surgery to be stable at less than 2cm. I had just gotten back to “normal” felt great actually then just before 4th treatment I started getting neck and shoulder pain. I am on a low dose of prednisone to reduce inflamation but the pain has persisted for three weeks now and has gotten much worse. Did you find a remedy?
                          Twhite00000
                          Participant
                            Stage 4 lung met. I am 4 months post lung surgery which was a major fail no tumor removal due to an inoperable number of small nodules a complete left lung removal would have been the only option. They biopsied a wedge with multiple nodules and they all were melanoma. I opted to try keytrudra and the last scan after three months of treatments shows the tumor that was left in me at surgery to be stable at less than 2cm. I had just gotten back to “normal” felt great actually then just before 4th treatment I started getting neck and shoulder pain. I am on a low dose of prednisone to reduce inflamation but the pain has persisted for three weeks now and has gotten much worse. Did you find a remedy?
                          arthurjedi007
                          Participant

                            Not caused by the keytruda nope. Now that pesky 12 cm by 10cm tumor in my shoulder can be a pain but it's much better again since the radiation while staying on keytruda. I haven't needed any pain meds in at least 6 weeks I think.

                            Artie

                            arthurjedi007
                            Participant

                              Not caused by the keytruda nope. Now that pesky 12 cm by 10cm tumor in my shoulder can be a pain but it's much better again since the radiation while staying on keytruda. I haven't needed any pain meds in at least 6 weeks I think.

                              Artie

                              arthurjedi007
                              Participant

                                Not caused by the keytruda nope. Now that pesky 12 cm by 10cm tumor in my shoulder can be a pain but it's much better again since the radiation while staying on keytruda. I haven't needed any pain meds in at least 6 weeks I think.

                                Artie

                                Jubes
                                Participant

                                  Thanks. I have never had this type of pain before. I can't turn over in bed or put the seatbelt on in the car and it is gradually spreading from my shoulder blade now up to my neck and down my back. I feel 100 years old. I have it getting worse for two months. I remember celeste posting something that my own doctors Kefford snd Carlino published regarding side effects of some patients on keytruda after 12 months and 14 months on it but I can't find it. I have scans at the end of April  so I will post anything interesting regarding whether this is keytruda side effects, disease progression or something different. 

                                  Anne-Louise 

                                  Jubes
                                  Participant

                                    Thanks. I have never had this type of pain before. I can't turn over in bed or put the seatbelt on in the car and it is gradually spreading from my shoulder blade now up to my neck and down my back. I feel 100 years old. I have it getting worse for two months. I remember celeste posting something that my own doctors Kefford snd Carlino published regarding side effects of some patients on keytruda after 12 months and 14 months on it but I can't find it. I have scans at the end of April  so I will post anything interesting regarding whether this is keytruda side effects, disease progression or something different. 

                                    Anne-Louise 

                                      Ames K
                                      Participant

                                        I have had the same thing, so I hope that makes you feel better. Many times I have thought the disease had spread there snd it hadn't. Even when I was on tafinlar. I've now had 3 infusions of keytruda and still my shoulders, upper arms and neck hurt bAdly. One of my shoulders is actually frozen, I can barely move it. Hope that helps! Amy

                                        Ames K
                                        Participant

                                          I have had the same thing, so I hope that makes you feel better. Many times I have thought the disease had spread there snd it hadn't. Even when I was on tafinlar. I've now had 3 infusions of keytruda and still my shoulders, upper arms and neck hurt bAdly. One of my shoulders is actually frozen, I can barely move it. Hope that helps! Amy

                                          Ames K
                                          Participant

                                            I have had the same thing, so I hope that makes you feel better. Many times I have thought the disease had spread there snd it hadn't. Even when I was on tafinlar. I've now had 3 infusions of keytruda and still my shoulders, upper arms and neck hurt bAdly. One of my shoulders is actually frozen, I can barely move it. Hope that helps! Amy

                                            Jubes
                                            Participant

                                              Yep. Helps a lot! Thanks 

                                              Jubes
                                              Participant

                                                Yep. Helps a lot! Thanks 

                                                Jubes
                                                Participant

                                                  Yep. Helps a lot! Thanks 

                                                  AnitaLoree
                                                  Participant

                                                    Jubes: Interesting and curious about this. My husband on Keytruda since 9/14 with increasing weakness, instability and pain in left quad tendons, knee attachments.  Med history different tho'.  Was probably dropped immediately post op (10/13, is 6-6 tall, lean, and ICU aid staff was usually short, initially one person) and likely suffered a stressful extreme weighted flexion to L knee, also developed large bursa to L elbow. After we got him home and stabilized, he began PT on left leg and was making good progress strengthening, balance, little pain, etc.  When he started Keytruda 11 mo later that knee went down hill.  My theory is that he went into Keytruda with some tenosynovitis still present and his now jacked up immune system has T cells also attacking the quad tendons besides (hopefully) his residual cervical spine melanoma.  So he started out with a possible L knee T cell target but you and your other posters had no concurrent muscle/tendon strains/inflammation so maybe my theory doesn't hold.  What we are doing about it:  because L knee is so limiting his activity we are going back to (Kaiser) orthopedist and requesting physiologist work up to inc impedance testing.  Also, because MRIs showing no change in tumor take up, apparently stable, we may consider stopping Keytruda after 12 mo.  However, would really llike to find Plan B treatment 1st. 

                                                    His only other SEs on Keytruda have been itchy rash (successfully using oatmeal lotion that a tho'tful member posted), fatigue 2-3 days after infusion, and a recent spike in TSH-watching.

                                                    Very sorry about the pain, understand how much it slows you down.  Husband does not take comm'l NSAIDs but i give him an anti inflammatory diet, keeping as alkaline as possible and herbal supplements with anti inflammatory effect.

                                                    Best wishes with your challenges.  A.L.

                                                     

                                                    AnitaLoree
                                                    Participant

                                                      Jubes: Interesting and curious about this. My husband on Keytruda since 9/14 with increasing weakness, instability and pain in left quad tendons, knee attachments.  Med history different tho'.  Was probably dropped immediately post op (10/13, is 6-6 tall, lean, and ICU aid staff was usually short, initially one person) and likely suffered a stressful extreme weighted flexion to L knee, also developed large bursa to L elbow. After we got him home and stabilized, he began PT on left leg and was making good progress strengthening, balance, little pain, etc.  When he started Keytruda 11 mo later that knee went down hill.  My theory is that he went into Keytruda with some tenosynovitis still present and his now jacked up immune system has T cells also attacking the quad tendons besides (hopefully) his residual cervical spine melanoma.  So he started out with a possible L knee T cell target but you and your other posters had no concurrent muscle/tendon strains/inflammation so maybe my theory doesn't hold.  What we are doing about it:  because L knee is so limiting his activity we are going back to (Kaiser) orthopedist and requesting physiologist work up to inc impedance testing.  Also, because MRIs showing no change in tumor take up, apparently stable, we may consider stopping Keytruda after 12 mo.  However, would really llike to find Plan B treatment 1st. 

                                                      His only other SEs on Keytruda have been itchy rash (successfully using oatmeal lotion that a tho'tful member posted), fatigue 2-3 days after infusion, and a recent spike in TSH-watching.

                                                      Very sorry about the pain, understand how much it slows you down.  Husband does not take comm'l NSAIDs but i give him an anti inflammatory diet, keeping as alkaline as possible and herbal supplements with anti inflammatory effect.

                                                      Best wishes with your challenges.  A.L.

                                                       

                                                      AnitaLoree
                                                      Participant

                                                        Jubes: Interesting and curious about this. My husband on Keytruda since 9/14 with increasing weakness, instability and pain in left quad tendons, knee attachments.  Med history different tho'.  Was probably dropped immediately post op (10/13, is 6-6 tall, lean, and ICU aid staff was usually short, initially one person) and likely suffered a stressful extreme weighted flexion to L knee, also developed large bursa to L elbow. After we got him home and stabilized, he began PT on left leg and was making good progress strengthening, balance, little pain, etc.  When he started Keytruda 11 mo later that knee went down hill.  My theory is that he went into Keytruda with some tenosynovitis still present and his now jacked up immune system has T cells also attacking the quad tendons besides (hopefully) his residual cervical spine melanoma.  So he started out with a possible L knee T cell target but you and your other posters had no concurrent muscle/tendon strains/inflammation so maybe my theory doesn't hold.  What we are doing about it:  because L knee is so limiting his activity we are going back to (Kaiser) orthopedist and requesting physiologist work up to inc impedance testing.  Also, because MRIs showing no change in tumor take up, apparently stable, we may consider stopping Keytruda after 12 mo.  However, would really llike to find Plan B treatment 1st. 

                                                        His only other SEs on Keytruda have been itchy rash (successfully using oatmeal lotion that a tho'tful member posted), fatigue 2-3 days after infusion, and a recent spike in TSH-watching.

                                                        Very sorry about the pain, understand how much it slows you down.  Husband does not take comm'l NSAIDs but i give him an anti inflammatory diet, keeping as alkaline as possible and herbal supplements with anti inflammatory effect.

                                                        Best wishes with your challenges.  A.L.

                                                         

                                                        sweetaugust
                                                        Participant

                                                          AnitaLoree – I love hearing that the oatmeal lotion worked for your husband.  That makes me so happy to hear.  I truly tried so many things to get rid of those rashes…and was so relieved when the colloidal oatmeal lotion finally took that itching and pain away.  And I think it's wonderful all that you are doing to try and keep him so healthy.

                                                          All my best, Laurie

                                                          sweetaugust
                                                          Participant

                                                            AnitaLoree – I love hearing that the oatmeal lotion worked for your husband.  That makes me so happy to hear.  I truly tried so many things to get rid of those rashes…and was so relieved when the colloidal oatmeal lotion finally took that itching and pain away.  And I think it's wonderful all that you are doing to try and keep him so healthy.

                                                            All my best, Laurie

                                                            Mat
                                                            Participant

                                                              Laurie, I meant to post a few weeks ago that I'm also using the oatmeal lotion (Nature's Way?) per your recommendation.  While not a total fix (not that you said it would be), it definitely helps a lot.  Much less greasy after application.  My onc's office has recommended Eucerin.  That stuff is gross.  Thanks again!

                                                              Mat
                                                              Participant

                                                                Laurie, I meant to post a few weeks ago that I'm also using the oatmeal lotion (Nature's Way?) per your recommendation.  While not a total fix (not that you said it would be), it definitely helps a lot.  Much less greasy after application.  My onc's office has recommended Eucerin.  That stuff is gross.  Thanks again!

                                                                sweetaugust
                                                                Participant

                                                                  So glad it has helped Mat!  It's by Nature's Gate.  I also bought some Tea Tree 100% pure essential oil and mixed that in when I was applying the lotion.  Maybe that will help make it the total fix.  πŸ™‚  The Tea Tree doesn't make you greasy….but it is stinky.  But perhaps the stink is worth the itch relieve.  πŸ™‚   Laurie

                                                                   

                                                                  sweetaugust
                                                                  Participant

                                                                    So glad it has helped Mat!  It's by Nature's Gate.  I also bought some Tea Tree 100% pure essential oil and mixed that in when I was applying the lotion.  Maybe that will help make it the total fix.  πŸ™‚  The Tea Tree doesn't make you greasy….but it is stinky.  But perhaps the stink is worth the itch relieve.  πŸ™‚   Laurie

                                                                     

                                                                    sweetaugust
                                                                    Participant

                                                                      So glad it has helped Mat!  It's by Nature's Gate.  I also bought some Tea Tree 100% pure essential oil and mixed that in when I was applying the lotion.  Maybe that will help make it the total fix.  πŸ™‚  The Tea Tree doesn't make you greasy….but it is stinky.  But perhaps the stink is worth the itch relieve.  πŸ™‚   Laurie

                                                                       

                                                                      Mat
                                                                      Participant

                                                                        Laurie, I meant to post a few weeks ago that I'm also using the oatmeal lotion (Nature's Way?) per your recommendation.  While not a total fix (not that you said it would be), it definitely helps a lot.  Much less greasy after application.  My onc's office has recommended Eucerin.  That stuff is gross.  Thanks again!

                                                                        sweetaugust
                                                                        Participant

                                                                          AnitaLoree – I love hearing that the oatmeal lotion worked for your husband.  That makes me so happy to hear.  I truly tried so many things to get rid of those rashes…and was so relieved when the colloidal oatmeal lotion finally took that itching and pain away.  And I think it's wonderful all that you are doing to try and keep him so healthy.

                                                                          All my best, Laurie

                                                                        Jubes
                                                                        Participant

                                                                          Thanks. I have never had this type of pain before. I can't turn over in bed or put the seatbelt on in the car and it is gradually spreading from my shoulder blade now up to my neck and down my back. I feel 100 years old. I have it getting worse for two months. I remember celeste posting something that my own doctors Kefford snd Carlino published regarding side effects of some patients on keytruda after 12 months and 14 months on it but I can't find it. I have scans at the end of April  so I will post anything interesting regarding whether this is keytruda side effects, disease progression or something different. 

                                                                          Anne-Louise 

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