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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!

        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?
      Jubes
      Participant

      That's neck! I am on a bus!

      Jubes
      Participant

      That's neck! I am on a bus!

      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 

        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 

        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

        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!

        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

        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

        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.

         

        Jubes
        Participant

        Yep. Helps a lot! Thanks 

        Jubes
        Participant

        Yep. Helps a lot! Thanks 

        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

      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 

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