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Troubleshooting side effects

Forums General Melanoma Community Troubleshooting side effects

  • Post
    Maria C
    Participant

      Hi all,

      Yesterday I had my third infusion of pembro and am dead tired today, with an achy body. We restarted immunotherapy after a summer (June – August) dealing with brain mets recurrences that have left my scalp very sore and tender from the radiation. I've also had all 4 ipi-nivo infusions last year.

      What confuses me is trying to identify what are side effects from the immunotherapy and what are just "normal" health issues. For instance, I've had hot & cold flashes for many months now, and believe I am in menopause (I'm at that age). However, reading these boards I have learned that others experience fevers and chills (at any age). In addition, my knees ache today like I've got the flu, plus I walked all over the city yesterday surrounding doctor appointments … but I've read on these boards that "joint pain" is a common side effect.

      Also I noticed my feet occasionally feel differently lately but it's NOT tingling. Am I imagining symptoms or are they real? How do we know what's what?

      Any & all thoughts appreciated!

    Viewing 17 reply threads
    • Replies
        Casitas1
        Participant

          Hi, I have been on Pembro since Jan. this year. I've had that flu feeling two or three times a week throughout. Almost like i am starting to come down with something but never do. Also have the joint issues. Dr. said anywhere there is arthritis or previous surgeries/injury there can be immune issues. i have pain and or swelling in both knees,ankles and wrist. I constantly feel like my feet walked all day and night at Disneyland. I think the normal health issues are definitely enhanced from immunotherapy.

          Best, Paul

          Casitas1
          Participant

            Hi, I have been on Pembro since Jan. this year. I've had that flu feeling two or three times a week throughout. Almost like i am starting to come down with something but never do. Also have the joint issues. Dr. said anywhere there is arthritis or previous surgeries/injury there can be immune issues. i have pain and or swelling in both knees,ankles and wrist. I constantly feel like my feet walked all day and night at Disneyland. I think the normal health issues are definitely enhanced from immunotherapy.

            Best, Paul

            Casitas1
            Participant

              Hi, I have been on Pembro since Jan. this year. I've had that flu feeling two or three times a week throughout. Almost like i am starting to come down with something but never do. Also have the joint issues. Dr. said anywhere there is arthritis or previous surgeries/injury there can be immune issues. i have pain and or swelling in both knees,ankles and wrist. I constantly feel like my feet walked all day and night at Disneyland. I think the normal health issues are definitely enhanced from immunotherapy.

              Best, Paul

              Bubbles
              Participant

                All immunotherapy products (ipi, nivo and pembro…or brand names yervoy, opdivo, and keytruda…if you like) cause similar side effects. Ipi usually causes the most but it varies person to person. Fatigue, rashes amd arthralgias are the most common and experienced by many. More concerning problems are pneumonitis or colitis as well as a host of immune related events…which are rarer but more significant and often need treatment (often steroids) and sometimes a break from the treatment med. There are many abstracts regarding side effects on my blog…use the search bubble if interested. Your complaints sound pretty typical, but I would certainly check with my medical provider to be sure.  Celeste

                Bubbles
                Participant

                  All immunotherapy products (ipi, nivo and pembro…or brand names yervoy, opdivo, and keytruda…if you like) cause similar side effects. Ipi usually causes the most but it varies person to person. Fatigue, rashes amd arthralgias are the most common and experienced by many. More concerning problems are pneumonitis or colitis as well as a host of immune related events…which are rarer but more significant and often need treatment (often steroids) and sometimes a break from the treatment med. There are many abstracts regarding side effects on my blog…use the search bubble if interested. Your complaints sound pretty typical, but I would certainly check with my medical provider to be sure.  Celeste

                  Bubbles
                  Participant

                    All immunotherapy products (ipi, nivo and pembro…or brand names yervoy, opdivo, and keytruda…if you like) cause similar side effects. Ipi usually causes the most but it varies person to person. Fatigue, rashes amd arthralgias are the most common and experienced by many. More concerning problems are pneumonitis or colitis as well as a host of immune related events…which are rarer but more significant and often need treatment (often steroids) and sometimes a break from the treatment med. There are many abstracts regarding side effects on my blog…use the search bubble if interested. Your complaints sound pretty typical, but I would certainly check with my medical provider to be sure.  Celeste

                    debwray
                    Participant

                      Hi Maria,

                      Agree it is a real conundrum trying to sort out what is what.

                      Hot and cold flushes could be pembro, infection or menopause. My periods stopped when I started pembro… thought I was having hot flushes related to menopause but in the light of being latter diagnosed with an infection deep in tissue of an old surgical scar it is probable!e these were infection related as they stopped when the infection was eventually diagnosed and controlled.. The amount of heat my knee generated was startling and had various investigations as it didn' t present classically as infection. In my case it was prob the infection  but did not really run temperature spikes.

                      My feet have some nerve problems due to pinching in the spine, which changes the degree of sensation. If feels a bit like sensation numbed by walking on wet newspaper even if feet are bear. This has got worse whilst on pembro so my feet feel constantly numb.. Peripheral neuropathy… But if I am on my feet a lot this progresses to a fizzing type sensation and I also get cramping in my lower leg muscles and they feel stiff and resistant to movement. Worsening of symptoms could be pembro but could also be  worsening of spinal issues or a combo of the two….we just don't know yet but evidence isbring collected. 

                      Gut feeling is if you have inflammation or arthriti

                      s in an area of the body pembro might make it worse.. But not in every case. Feel like pembro acted as a magnifier of various symptoms in my case. You are not alone in trying to get all this figured out but it feels like early days yet for determining short and long trerm effects and working out likely timings for side effects . Seems to be some evidence side effects can be cummulative but this seems to vary with the different types.. Skin / endocrine/ etc

                       

                      Hope it all sors out for you

                      Deb

                      debwray
                      Participant

                        Hi Maria,

                        Agree it is a real conundrum trying to sort out what is what.

                        Hot and cold flushes could be pembro, infection or menopause. My periods stopped when I started pembro… thought I was having hot flushes related to menopause but in the light of being latter diagnosed with an infection deep in tissue of an old surgical scar it is probable!e these were infection related as they stopped when the infection was eventually diagnosed and controlled.. The amount of heat my knee generated was startling and had various investigations as it didn' t present classically as infection. In my case it was prob the infection  but did not really run temperature spikes.

                        My feet have some nerve problems due to pinching in the spine, which changes the degree of sensation. If feels a bit like sensation numbed by walking on wet newspaper even if feet are bear. This has got worse whilst on pembro so my feet feel constantly numb.. Peripheral neuropathy… But if I am on my feet a lot this progresses to a fizzing type sensation and I also get cramping in my lower leg muscles and they feel stiff and resistant to movement. Worsening of symptoms could be pembro but could also be  worsening of spinal issues or a combo of the two….we just don't know yet but evidence isbring collected. 

                        Gut feeling is if you have inflammation or arthriti

                        s in an area of the body pembro might make it worse.. But not in every case. Feel like pembro acted as a magnifier of various symptoms in my case. You are not alone in trying to get all this figured out but it feels like early days yet for determining short and long trerm effects and working out likely timings for side effects . Seems to be some evidence side effects can be cummulative but this seems to vary with the different types.. Skin / endocrine/ etc

                         

                        Hope it all sors out for you

                        Deb

                        debwray
                        Participant

                          Hi Maria,

                          Agree it is a real conundrum trying to sort out what is what.

                          Hot and cold flushes could be pembro, infection or menopause. My periods stopped when I started pembro… thought I was having hot flushes related to menopause but in the light of being latter diagnosed with an infection deep in tissue of an old surgical scar it is probable!e these were infection related as they stopped when the infection was eventually diagnosed and controlled.. The amount of heat my knee generated was startling and had various investigations as it didn' t present classically as infection. In my case it was prob the infection  but did not really run temperature spikes.

                          My feet have some nerve problems due to pinching in the spine, which changes the degree of sensation. If feels a bit like sensation numbed by walking on wet newspaper even if feet are bear. This has got worse whilst on pembro so my feet feel constantly numb.. Peripheral neuropathy… But if I am on my feet a lot this progresses to a fizzing type sensation and I also get cramping in my lower leg muscles and they feel stiff and resistant to movement. Worsening of symptoms could be pembro but could also be  worsening of spinal issues or a combo of the two….we just don't know yet but evidence isbring collected. 

                          Gut feeling is if you have inflammation or arthriti

                          s in an area of the body pembro might make it worse.. But not in every case. Feel like pembro acted as a magnifier of various symptoms in my case. You are not alone in trying to get all this figured out but it feels like early days yet for determining short and long trerm effects and working out likely timings for side effects . Seems to be some evidence side effects can be cummulative but this seems to vary with the different types.. Skin / endocrine/ etc

                           

                          Hope it all sors out for you

                          Deb

                          Polymath
                          Participant

                            Hi Maria,

                            Perhaps there is some consolation in that side-effects seem to also indicate response to therapy.  As someone who has experienced few side-effects, I have also had little response to various drug treatments.  Its weird to want side-effects but that's how I sometimes feel.  In the simplest terms, a revved up immune system starts detecting things in the body that it would normally not target.  So the T-cells attack, and cause inflammation.  Good for tumor destruction, bad for all the rest of your body that was otherwise doing just fine.  So at least you are most likely responding.  Lose the battle, win the war.

                            Gary

                            Polymath
                            Participant

                              Hi Maria,

                              Perhaps there is some consolation in that side-effects seem to also indicate response to therapy.  As someone who has experienced few side-effects, I have also had little response to various drug treatments.  Its weird to want side-effects but that's how I sometimes feel.  In the simplest terms, a revved up immune system starts detecting things in the body that it would normally not target.  So the T-cells attack, and cause inflammation.  Good for tumor destruction, bad for all the rest of your body that was otherwise doing just fine.  So at least you are most likely responding.  Lose the battle, win the war.

                              Gary

                              Polymath
                              Participant

                                Hi Maria,

                                Perhaps there is some consolation in that side-effects seem to also indicate response to therapy.  As someone who has experienced few side-effects, I have also had little response to various drug treatments.  Its weird to want side-effects but that's how I sometimes feel.  In the simplest terms, a revved up immune system starts detecting things in the body that it would normally not target.  So the T-cells attack, and cause inflammation.  Good for tumor destruction, bad for all the rest of your body that was otherwise doing just fine.  So at least you are most likely responding.  Lose the battle, win the war.

                                Gary

                                Maria C
                                Participant

                                  Thanks to all for replying. I honestly feel like the Tin Man who needs oiled to move my legs without pain. Once I start walking I'm fine, but it's getting up from a sitting position and taking those first steps that make me feel ancient. 

                                  I never had athritis or any internal infection that I know of. And I have noticed my hot flashes mostly at night when I'm trying to sleep, and only in the day when I'm feeling stressed, so am leaning toward it being about menopause…which my doc & husband believe is a good sign my body is otherwise working right as it's about time for my "change." (An old Edith Bunker term, yes?!)

                                  Compared to my extreme reactions to ipi/nivo (pneumonitis, retina-detachment), this is a walk in the park, but I am worried about cumulative effect and delayed reaction and really just want to get off the pembro asap. We will know more my next brain MRI at end of October.

                                  What's also troublesome is the on & off ringing in my ears, which I only seem to notice also at night…

                                  Maria C
                                  Participant

                                    Thanks to all for replying. I honestly feel like the Tin Man who needs oiled to move my legs without pain. Once I start walking I'm fine, but it's getting up from a sitting position and taking those first steps that make me feel ancient. 

                                    I never had athritis or any internal infection that I know of. And I have noticed my hot flashes mostly at night when I'm trying to sleep, and only in the day when I'm feeling stressed, so am leaning toward it being about menopause…which my doc & husband believe is a good sign my body is otherwise working right as it's about time for my "change." (An old Edith Bunker term, yes?!)

                                    Compared to my extreme reactions to ipi/nivo (pneumonitis, retina-detachment), this is a walk in the park, but I am worried about cumulative effect and delayed reaction and really just want to get off the pembro asap. We will know more my next brain MRI at end of October.

                                    What's also troublesome is the on & off ringing in my ears, which I only seem to notice also at night…

                                    Maria C
                                    Participant

                                      Thanks to all for replying. I honestly feel like the Tin Man who needs oiled to move my legs without pain. Once I start walking I'm fine, but it's getting up from a sitting position and taking those first steps that make me feel ancient. 

                                      I never had athritis or any internal infection that I know of. And I have noticed my hot flashes mostly at night when I'm trying to sleep, and only in the day when I'm feeling stressed, so am leaning toward it being about menopause…which my doc & husband believe is a good sign my body is otherwise working right as it's about time for my "change." (An old Edith Bunker term, yes?!)

                                      Compared to my extreme reactions to ipi/nivo (pneumonitis, retina-detachment), this is a walk in the park, but I am worried about cumulative effect and delayed reaction and really just want to get off the pembro asap. We will know more my next brain MRI at end of October.

                                      What's also troublesome is the on & off ringing in my ears, which I only seem to notice also at night…

                                      jvictoria
                                      Participant

                                        Hi Maria,

                                        have your cortisol levels been tested lately? I had similar symptons during Nivo and mine were on the floor.

                                        jvictoria
                                        Participant

                                          Hi Maria,

                                          have your cortisol levels been tested lately? I had similar symptons during Nivo and mine were on the floor.

                                          jvictoria
                                          Participant

                                            Hi Maria,

                                            have your cortisol levels been tested lately? I had similar symptons during Nivo and mine were on the floor.

                                        Viewing 17 reply threads
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