Pneumonitis?

Forums General Melanoma Community Pneumonitis?

  • Post
    jennunicorn
    Participant

      I recall reading that some people have developed pneumonitis while on immunotherapy drugs. I have had these symptoms for the past week: deep cough with not a lot of mucus but not totally dry, burning feeling in lungs (like the feeling after a run or heavy exercise), heavy chest, more fatigue than usual.

      Wondering if anyone else who has dealt with pneumonitis can tell me if these symptoms sound familiar, or maybe it's just the crappy air quality of california that's doing it. Had pneumonia as a baby, not sure if that makes me more susceptible or not. Emailed my onc, should hear back from her tomorrow, but wanted to get some input from you guys.

      Thanks 🙂

    Viewing 17 reply threads
    • Replies
        debwray
        Participant

          Hi Jenn,

          I'm on Pembro-  and a cough /breathlessness is something it has been stressed I should report promptly.. I'm sure you are right to talk to your doctors about these symptoms as if it is pneumonitis the earlier you get treatment for this the better.- although it looks like pneumonitis is more common with pembro than Yervoy.

          There is quite a lot of info on the boards about checkpoint inhibitors …which might help but I'm sure someone will chip in soon with a reply based on their experience .

          https://www.melanoma.org/search/mpip/pneumonitis%20ipi

          Looks like they take x rays-or maybe even a ct scan and exclude infection but if it looks like inflammation and breathlessness are present a course of steroids is a possibility…. Just wanted to encourage you to get it assessed sooner rather than later…..crossing my fingers it settles really soon. Best of luck- Deb

           

           

           

          debwray
          Participant

            Hi Jenn,

            I'm on Pembro-  and a cough /breathlessness is something it has been stressed I should report promptly.. I'm sure you are right to talk to your doctors about these symptoms as if it is pneumonitis the earlier you get treatment for this the better.- although it looks like pneumonitis is more common with pembro than Yervoy.

            There is quite a lot of info on the boards about checkpoint inhibitors …which might help but I'm sure someone will chip in soon with a reply based on their experience .

            https://www.melanoma.org/search/mpip/pneumonitis%20ipi

            Looks like they take x rays-or maybe even a ct scan and exclude infection but if it looks like inflammation and breathlessness are present a course of steroids is a possibility…. Just wanted to encourage you to get it assessed sooner rather than later…..crossing my fingers it settles really soon. Best of luck- Deb

             

             

             

            debwray
            Participant

              Hi Jenn,

              I'm on Pembro-  and a cough /breathlessness is something it has been stressed I should report promptly.. I'm sure you are right to talk to your doctors about these symptoms as if it is pneumonitis the earlier you get treatment for this the better.- although it looks like pneumonitis is more common with pembro than Yervoy.

              There is quite a lot of info on the boards about checkpoint inhibitors …which might help but I'm sure someone will chip in soon with a reply based on their experience .

              https://www.melanoma.org/search/mpip/pneumonitis%20ipi

              Looks like they take x rays-or maybe even a ct scan and exclude infection but if it looks like inflammation and breathlessness are present a course of steroids is a possibility…. Just wanted to encourage you to get it assessed sooner rather than later…..crossing my fingers it settles really soon. Best of luck- Deb

               

               

               

              Maria C
              Participant

                Hi Jenn,

                I had pneumonitis when I was on the ipi/nivo combo. The primary symptom for me was heavy breathing, I don't recall a cough or any burning feeling, but I imagine your onc will want to take a look through scans to see what's going on. When they did diagnos me with pneuminitis, I was put on steroids but it took a long time – about 4-6 weeks if I recall – to resolve fully. 

                Good luck on this one & please keep us posted with your results!

                 

                Maria C
                Participant

                  Hi Jenn,

                  I had pneumonitis when I was on the ipi/nivo combo. The primary symptom for me was heavy breathing, I don't recall a cough or any burning feeling, but I imagine your onc will want to take a look through scans to see what's going on. When they did diagnos me with pneuminitis, I was put on steroids but it took a long time – about 4-6 weeks if I recall – to resolve fully. 

                  Good luck on this one & please keep us posted with your results!

                   

                  Maria C
                  Participant

                    Hi Jenn,

                    I had pneumonitis when I was on the ipi/nivo combo. The primary symptom for me was heavy breathing, I don't recall a cough or any burning feeling, but I imagine your onc will want to take a look through scans to see what's going on. When they did diagnos me with pneuminitis, I was put on steroids but it took a long time – about 4-6 weeks if I recall – to resolve fully. 

                    Good luck on this one & please keep us posted with your results!

                     

                    Casitas1
                    Participant

                      Hey Jenn, I caught a bad virus two weeks after starting Pembro back in Jan/2016. I have had the cough(productive) part of it ever since! I live in S. Cal. and used an inhaler occasionally. My oncologist just prescribed Advair and seems to be helping a little with the wheezing and drying up the cough. Also crusty eyes and nose(foul smell) Maybe my body trying to get rid of the chemicals? cough always a little better before infusions and worse just after.

                      Best, Paul

                      Casitas1
                      Participant

                        Hey Jenn, I caught a bad virus two weeks after starting Pembro back in Jan/2016. I have had the cough(productive) part of it ever since! I live in S. Cal. and used an inhaler occasionally. My oncologist just prescribed Advair and seems to be helping a little with the wheezing and drying up the cough. Also crusty eyes and nose(foul smell) Maybe my body trying to get rid of the chemicals? cough always a little better before infusions and worse just after.

                        Best, Paul

                        Casitas1
                        Participant

                          Hey Jenn, I caught a bad virus two weeks after starting Pembro back in Jan/2016. I have had the cough(productive) part of it ever since! I live in S. Cal. and used an inhaler occasionally. My oncologist just prescribed Advair and seems to be helping a little with the wheezing and drying up the cough. Also crusty eyes and nose(foul smell) Maybe my body trying to get rid of the chemicals? cough always a little better before infusions and worse just after.

                          Best, Paul

                          WithinMySkin
                          Participant
                            Oh man, I’m sorry to hear this, Jenn! Truly hoping it’s just the beginning of a cold (or something super minor) rather than pneumonitis. We always think the worst, and I’m not wishing a summertime cold on you, but that’s a heck of a lot better than other possibilities!! I’m sure, though, that your onc will be quick to respond and get to the bottom of your symptoms. Hope you can rest up and feel better!!

                            Lauren

                            WithinMySkin
                            Participant
                              Oh man, I’m sorry to hear this, Jenn! Truly hoping it’s just the beginning of a cold (or something super minor) rather than pneumonitis. We always think the worst, and I’m not wishing a summertime cold on you, but that’s a heck of a lot better than other possibilities!! I’m sure, though, that your onc will be quick to respond and get to the bottom of your symptoms. Hope you can rest up and feel better!!

                              Lauren

                              WithinMySkin
                              Participant
                                Oh man, I’m sorry to hear this, Jenn! Truly hoping it’s just the beginning of a cold (or something super minor) rather than pneumonitis. We always think the worst, and I’m not wishing a summertime cold on you, but that’s a heck of a lot better than other possibilities!! I’m sure, though, that your onc will be quick to respond and get to the bottom of your symptoms. Hope you can rest up and feel better!!

                                Lauren

                                jennunicorn
                                Participant

                                  Thanks everyone for the replies and input. My onc is scheduling a chest CT to see what's going on. She's also hoping it is not Ipi related and hoping it's just a virus. My next infusion is scheduled for a week from Monday so she definitely wants to get to the bottom of this soon in case I need to stop or delay treatment. Will keep you posted on what happens.

                                  jennunicorn
                                  Participant

                                    Thanks everyone for the replies and input. My onc is scheduling a chest CT to see what's going on. She's also hoping it is not Ipi related and hoping it's just a virus. My next infusion is scheduled for a week from Monday so she definitely wants to get to the bottom of this soon in case I need to stop or delay treatment. Will keep you posted on what happens.

                                    jennunicorn
                                    Participant

                                      Thanks everyone for the replies and input. My onc is scheduling a chest CT to see what's going on. She's also hoping it is not Ipi related and hoping it's just a virus. My next infusion is scheduled for a week from Monday so she definitely wants to get to the bottom of this soon in case I need to stop or delay treatment. Will keep you posted on what happens.

                                        keepthefaith11
                                        Participant
                                          Jenn, thinking of you hoping it is just a cold or virus. Can happen for sure during the summer months. Keep us updated!

                                          Annie

                                          keepthefaith11
                                          Participant
                                            Jenn, thinking of you hoping it is just a cold or virus. Can happen for sure during the summer months. Keep us updated!

                                            Annie

                                            keepthefaith11
                                            Participant
                                              Jenn, thinking of you hoping it is just a cold or virus. Can happen for sure during the summer months. Keep us updated!

                                              Annie

                                              jennunicorn
                                              Participant

                                                Thanks Annie! 

                                                jennunicorn
                                                Participant

                                                  Thanks Annie! 

                                                  jennunicorn
                                                  Participant

                                                    Thanks Annie! 

                                                  jennunicorn
                                                  Participant

                                                    CT scan was good. The nodules that were seen on my June scan are still there but have not changed. No sign of pneumonitis. Just a weird chest cold. It is starting to improve, just need to rest and get over this thing.

                                                    Thanks for the support everyone.

                                                    jennunicorn
                                                    Participant

                                                      CT scan was good. The nodules that were seen on my June scan are still there but have not changed. No sign of pneumonitis. Just a weird chest cold. It is starting to improve, just need to rest and get over this thing.

                                                      Thanks for the support everyone.

                                                      jennunicorn
                                                      Participant

                                                        CT scan was good. The nodules that were seen on my June scan are still there but have not changed. No sign of pneumonitis. Just a weird chest cold. It is starting to improve, just need to rest and get over this thing.

                                                        Thanks for the support everyone.

                                                          WithinMySkin
                                                          Participant
                                                            Great news, Jenn! I’m sure that’s a huge relief. Hope you get lots of R&R and feel better soon!
                                                            WithinMySkin
                                                            Participant
                                                              Great news, Jenn! I’m sure that’s a huge relief. Hope you get lots of R&R and feel better soon!
                                                              WithinMySkin
                                                              Participant
                                                                Great news, Jenn! I’m sure that’s a huge relief. Hope you get lots of R&R and feel better soon!
                                                                jennunicorn
                                                                Participant

                                                                  Thanks Lauren! Definitely a huge relief!

                                                                  jennunicorn
                                                                  Participant

                                                                    Thanks Lauren! Definitely a huge relief!

                                                                    jennunicorn
                                                                    Participant

                                                                      Thanks Lauren! Definitely a huge relief!

                                                                Viewing 17 reply threads
                                                                • You must be logged in to reply to this topic.
                                                                About the MRF Patient Forum

                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                Popular Topics