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Side effects of stopping PD1
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Side effects of stopping PD1

› Forums › General Melanoma Community › Side effects of stopping PD1

  • Post
    • September 4, 2015 at 10:00 pm
    Lisa – Aust
    Participant

      Hello Everyone, 

      Just wondering what kind of side effects those who have stopped PD1 have experienced. 

      My husband has been off treatment for a couple of months (after being on for around 1.5 years) and is experiencing 'tingling' of feet, hands and face – he describes it almost like his body is vibrating at times. While on treatment he also developed tinnitus, but the Drs and specialists are saying it's not related to the drug. Just curious if anyone has experienced similar sensations. He's just been checked out scan wise, and is all clear. 

      Thanks

      Lisa

    Viewing 11 reply threads
    • Replies
        • September 5, 2015 at 4:53 am
        ET-SF
        Participant

          I have no idea about the paresthesia (tingling in hands, feet, face).  However, I think it's reasonable to suspect the tinitus has resulted from his treatment.  Some immunotherapy treatments do sometimes (rarely) result in deafness.  Tinitus is one manifestation of hearing loss.

          • September 5, 2015 at 4:53 am
          ET-SF
          Participant

            I have no idea about the paresthesia (tingling in hands, feet, face).  However, I think it's reasonable to suspect the tinitus has resulted from his treatment.  Some immunotherapy treatments do sometimes (rarely) result in deafness.  Tinitus is one manifestation of hearing loss.

              • September 7, 2015 at 9:19 am
              Lisa – Aust
              Participant

                Hi there

                He has seen a fair few specialists now about the tinnitus, and it's seems there are a few things contributing. He had a neck dissection (altered anatomy), radiation to that side of head/neck and is pretty anxious. His hearing is fine, so it does make sense that all these things in combo, including treatment in my opinion, are having an effect. (Drs aren't as convinced!) 

                Thanks for your reply, the tinnitus is not enjoyable!! 

                 

                Lisa 🙂

                • September 7, 2015 at 9:19 am
                Lisa – Aust
                Participant

                  Hi there

                  He has seen a fair few specialists now about the tinnitus, and it's seems there are a few things contributing. He had a neck dissection (altered anatomy), radiation to that side of head/neck and is pretty anxious. His hearing is fine, so it does make sense that all these things in combo, including treatment in my opinion, are having an effect. (Drs aren't as convinced!) 

                  Thanks for your reply, the tinnitus is not enjoyable!! 

                   

                  Lisa 🙂

                  • September 7, 2015 at 9:19 am
                  Lisa – Aust
                  Participant

                    Hi there

                    He has seen a fair few specialists now about the tinnitus, and it's seems there are a few things contributing. He had a neck dissection (altered anatomy), radiation to that side of head/neck and is pretty anxious. His hearing is fine, so it does make sense that all these things in combo, including treatment in my opinion, are having an effect. (Drs aren't as convinced!) 

                    Thanks for your reply, the tinnitus is not enjoyable!! 

                     

                    Lisa 🙂

                  • September 5, 2015 at 4:53 am
                  ET-SF
                  Participant

                    I have no idea about the paresthesia (tingling in hands, feet, face).  However, I think it's reasonable to suspect the tinitus has resulted from his treatment.  Some immunotherapy treatments do sometimes (rarely) result in deafness.  Tinitus is one manifestation of hearing loss.

                    • September 5, 2015 at 10:35 am
                    Jubes
                    Participant

                      Hi lisa

                      i am in Sydney. I stopped keytruda after my last infusion on 7 August due to increasing poly myalgia. I was almost paralysed and am now on prednisone till I can be weaned off. Was on keytruda for nearly a year. I have noticed tinnitus lately but it seems to be spasmodic.  being a musician I had experienced it before after very loud concerts so I didn't really connect it with my treatment.  I have not had any tingling yet. It is hard to know if these side effects are continuing effects from the drug. My rash has changed several times during the year from a general light rash to nothing to three or four big sores on my legs and chest. My next pet is sept 14 but to me it feels like despite 25 mg prednisone per day that keytruda is still strongly affecting me. 

                      All  the best to you and your husband

                      anne-Louise 

                        • September 7, 2015 at 9:24 am
                        Lisa – Aust
                        Participant

                          Hi Anne Louise

                          thanks for your reply. We are in Perth 

                          Wow your experience doesn't sound like much fun! My husband Craig has been lucky in that he had no real side effects while on treatment. He went to ED the other night and they suggested that the tingling is likely a result of stopping treatment, so will check in with his onc this week. His tinnitus started while on treatment, but hasn't really changed since stopping. He is on low dose endep for it. 

                          I hope that you are doing well otherwise and that the weaning goes ok.

                          thanks again

                          lisa

                          • September 7, 2015 at 9:24 am
                          Lisa – Aust
                          Participant

                            Hi Anne Louise

                            thanks for your reply. We are in Perth 

                            Wow your experience doesn't sound like much fun! My husband Craig has been lucky in that he had no real side effects while on treatment. He went to ED the other night and they suggested that the tingling is likely a result of stopping treatment, so will check in with his onc this week. His tinnitus started while on treatment, but hasn't really changed since stopping. He is on low dose endep for it. 

                            I hope that you are doing well otherwise and that the weaning goes ok.

                            thanks again

                            lisa

                            • September 7, 2015 at 9:24 am
                            Lisa – Aust
                            Participant

                              Hi Anne Louise

                              thanks for your reply. We are in Perth 

                              Wow your experience doesn't sound like much fun! My husband Craig has been lucky in that he had no real side effects while on treatment. He went to ED the other night and they suggested that the tingling is likely a result of stopping treatment, so will check in with his onc this week. His tinnitus started while on treatment, but hasn't really changed since stopping. He is on low dose endep for it. 

                              I hope that you are doing well otherwise and that the weaning goes ok.

                              thanks again

                              lisa

                            • September 5, 2015 at 10:35 am
                            Jubes
                            Participant

                              Hi lisa

                              i am in Sydney. I stopped keytruda after my last infusion on 7 August due to increasing poly myalgia. I was almost paralysed and am now on prednisone till I can be weaned off. Was on keytruda for nearly a year. I have noticed tinnitus lately but it seems to be spasmodic.  being a musician I had experienced it before after very loud concerts so I didn't really connect it with my treatment.  I have not had any tingling yet. It is hard to know if these side effects are continuing effects from the drug. My rash has changed several times during the year from a general light rash to nothing to three or four big sores on my legs and chest. My next pet is sept 14 but to me it feels like despite 25 mg prednisone per day that keytruda is still strongly affecting me. 

                              All  the best to you and your husband

                              anne-Louise 

                              • September 5, 2015 at 10:35 am
                              Jubes
                              Participant

                                Hi lisa

                                i am in Sydney. I stopped keytruda after my last infusion on 7 August due to increasing poly myalgia. I was almost paralysed and am now on prednisone till I can be weaned off. Was on keytruda for nearly a year. I have noticed tinnitus lately but it seems to be spasmodic.  being a musician I had experienced it before after very loud concerts so I didn't really connect it with my treatment.  I have not had any tingling yet. It is hard to know if these side effects are continuing effects from the drug. My rash has changed several times during the year from a general light rash to nothing to three or four big sores on my legs and chest. My next pet is sept 14 but to me it feels like despite 25 mg prednisone per day that keytruda is still strongly affecting me. 

                                All  the best to you and your husband

                                anne-Louise 

                                • September 5, 2015 at 12:44 pm
                                katie1
                                Participant

                                  Not sure this helps to answer your question but my husband developed "ringing in his ears" while on IPI. He did develop hypophysitis with permanent adrenal insufficiency. Tinitus is now a warnng sign for him that his cortisol is low. Two years after his last dose of IPI he still occasionally has strange tingling sensations in his feet

                                  Kare

                                   

                                    • September 7, 2015 at 9:27 am
                                    Lisa – Aust
                                    Participant

                                      Hi Kare

                                      Thanks for your reply.

                                      How interesting about your husband. No one has suggested that yet (the adrenal insufficiency), but I might look into it/ask questions when we next see the onc.

                                      i have heard of tinnitus being a side effect of ipi, but not so much on the pd1 drugs. It's not fun.  

                                      Thanks again

                                      Lisa 

                                      • September 7, 2015 at 9:27 am
                                      Lisa – Aust
                                      Participant

                                        Hi Kare

                                        Thanks for your reply.

                                        How interesting about your husband. No one has suggested that yet (the adrenal insufficiency), but I might look into it/ask questions when we next see the onc.

                                        i have heard of tinnitus being a side effect of ipi, but not so much on the pd1 drugs. It's not fun.  

                                        Thanks again

                                        Lisa 

                                        • September 7, 2015 at 9:27 am
                                        Lisa – Aust
                                        Participant

                                          Hi Kare

                                          Thanks for your reply.

                                          How interesting about your husband. No one has suggested that yet (the adrenal insufficiency), but I might look into it/ask questions when we next see the onc.

                                          i have heard of tinnitus being a side effect of ipi, but not so much on the pd1 drugs. It's not fun.  

                                          Thanks again

                                          Lisa 

                                        • September 5, 2015 at 12:44 pm
                                        katie1
                                        Participant

                                          Not sure this helps to answer your question but my husband developed "ringing in his ears" while on IPI. He did develop hypophysitis with permanent adrenal insufficiency. Tinitus is now a warnng sign for him that his cortisol is low. Two years after his last dose of IPI he still occasionally has strange tingling sensations in his feet

                                          Kare

                                           

                                          • September 5, 2015 at 12:44 pm
                                          katie1
                                          Participant

                                            Not sure this helps to answer your question but my husband developed "ringing in his ears" while on IPI. He did develop hypophysitis with permanent adrenal insufficiency. Tinitus is now a warnng sign for him that his cortisol is low. Two years after his last dose of IPI he still occasionally has strange tingling sensations in his feet

                                            Kare

                                             

                                            • September 5, 2015 at 1:54 pm
                                            ed williams
                                            Participant

                                              Hi Lisa, happy to hear that the scans are clear. Last summer Bristol Myer Squibb came out with a  consent form update that I had to sign off on. One of the bold print side effects that they changed the wording on was Tingling, burning or numbness in hands and feet. I had one of the other new side effects which was difficulty swallowing( not all the time) . I look at it as just being part of what comes with new experimental science that will help others Melanoma patients. Just think of the people who were part of the phase one trials where they were trying to figure out dose and side effects. If i remember correctly, a couple of people died from pneumonitis until they figured out how to deal with the side effects. I am due to finish in January 2016 and I am looking forward to see what side effects stay with me and which ones will go away. Wishing you and your husband the best!!! Ed

                                                • September 7, 2015 at 9:33 am
                                                Lisa – Aust
                                                Participant

                                                  Hi Ed

                                                  Thanks for your reply. 

                                                  Maybe we should have read more about the side effects when signing those forms! He is on the Merck trial (well, just stopped and doing wait and see). He would have been due to finish late this year, so all up did around 18 months on the drug.

                                                  its just strange as these symptoms developed a couple of months after stopping the drug (the tingling, that is. The tinnitus started about mid way through treatment).

                                                  Its reassuring that the tingling can be explained by the drug. The Drs in ED the other night thought maybe it was a withdrawal type symptom. Will see what his Prof says this week. 

                                                  Good luck for the duration of your treatment – what a fab drug!

                                                  Thanks 

                                                  Lisa 

                                                  • September 7, 2015 at 9:33 am
                                                  Lisa – Aust
                                                  Participant

                                                    Hi Ed

                                                    Thanks for your reply. 

                                                    Maybe we should have read more about the side effects when signing those forms! He is on the Merck trial (well, just stopped and doing wait and see). He would have been due to finish late this year, so all up did around 18 months on the drug.

                                                    its just strange as these symptoms developed a couple of months after stopping the drug (the tingling, that is. The tinnitus started about mid way through treatment).

                                                    Its reassuring that the tingling can be explained by the drug. The Drs in ED the other night thought maybe it was a withdrawal type symptom. Will see what his Prof says this week. 

                                                    Good luck for the duration of your treatment – what a fab drug!

                                                    Thanks 

                                                    Lisa 

                                                    • September 7, 2015 at 9:33 am
                                                    Lisa – Aust
                                                    Participant

                                                      Hi Ed

                                                      Thanks for your reply. 

                                                      Maybe we should have read more about the side effects when signing those forms! He is on the Merck trial (well, just stopped and doing wait and see). He would have been due to finish late this year, so all up did around 18 months on the drug.

                                                      its just strange as these symptoms developed a couple of months after stopping the drug (the tingling, that is. The tinnitus started about mid way through treatment).

                                                      Its reassuring that the tingling can be explained by the drug. The Drs in ED the other night thought maybe it was a withdrawal type symptom. Will see what his Prof says this week. 

                                                      Good luck for the duration of your treatment – what a fab drug!

                                                      Thanks 

                                                      Lisa 

                                                    • September 5, 2015 at 1:54 pm
                                                    ed williams
                                                    Participant

                                                      Hi Lisa, happy to hear that the scans are clear. Last summer Bristol Myer Squibb came out with a  consent form update that I had to sign off on. One of the bold print side effects that they changed the wording on was Tingling, burning or numbness in hands and feet. I had one of the other new side effects which was difficulty swallowing( not all the time) . I look at it as just being part of what comes with new experimental science that will help others Melanoma patients. Just think of the people who were part of the phase one trials where they were trying to figure out dose and side effects. If i remember correctly, a couple of people died from pneumonitis until they figured out how to deal with the side effects. I am due to finish in January 2016 and I am looking forward to see what side effects stay with me and which ones will go away. Wishing you and your husband the best!!! Ed

                                                      • September 5, 2015 at 1:54 pm
                                                      ed williams
                                                      Participant

                                                        Hi Lisa, happy to hear that the scans are clear. Last summer Bristol Myer Squibb came out with a  consent form update that I had to sign off on. One of the bold print side effects that they changed the wording on was Tingling, burning or numbness in hands and feet. I had one of the other new side effects which was difficulty swallowing( not all the time) . I look at it as just being part of what comes with new experimental science that will help others Melanoma patients. Just think of the people who were part of the phase one trials where they were trying to figure out dose and side effects. If i remember correctly, a couple of people died from pneumonitis until they figured out how to deal with the side effects. I am due to finish in January 2016 and I am looking forward to see what side effects stay with me and which ones will go away. Wishing you and your husband the best!!! Ed

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