The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Pneumonitis Treatment

Forums General Melanoma Community Pneumonitis Treatment

  • Post
    Maria C
    Participant

      Hi all – 

      I'm wondering if anyone else on this board has dealt with pneumonitis as a side effect from the ipi/nivo combo, and if so, how long did it last and what did your treatment look like?

      I'm 6 weeks in with this side effect after my 4th and final dose of the ipi/nivo. At first I had a CT scan of the lungs, and there was a little activity but nothing too alarming. With the hope of not going on steroids that would prolong the first maintenance (nivo) infusion, I was given antibiotics at first to see if that cleared things up, then when it didn't I was given a short burst (1 week) of steroids which helped. A week after I got off them and was scheduled for the infusion, I had shortness of breath again followed by a wait & see period of 2-3 weeks. Still not clear so I got another CT scan earlier this week which showed lots of activity, and on Monday I will have to go for a bronchoscopy to identify whether it's inflammation or infection (possibly PCP).

      Has anyone else had a similar experience? I was told by the pulmonary doctor today that treatment for this can last up to 6 months, which would delay my maintenance regiment significantly … a troubling thought …

      Thanks for any insight others can offer.

       

       

    Viewing 5 reply threads
    • Replies
        Polymath
        Participant

          Hi Maria,

          Not sure how much this will help, but its the first time I've seen it mentioned on the board.  Yes, I too experienced severe shortness of breath soon after my 4th infusion of the ipi/nivo combo.  It was pretty scary I must say, and later discovered this is a possible side-effect from the combo.  My doc was quite concerned, and prescribed a strong dose of prednisone.  I was going to start the prednisone the next day and ironically, my symptoms began to diminish that morning so I did not start the meds.  A later CT of chest revealed a bunch of inflammation.  Luckily I was able to stay on the nivo only as symptoms continued to slowly resolve themselves but it was a close call and I was almost denied further nivo treatments.  I had also had radiation therapy not long ago and it was determined that  the problem was more likely whats called radiation pneumonitis. I am still dealing with mild symptoms months later, with slight shortness of breath, and an intermittent hacking cough.

          Gary

          Polymath
          Participant

            Hi Maria,

            Not sure how much this will help, but its the first time I've seen it mentioned on the board.  Yes, I too experienced severe shortness of breath soon after my 4th infusion of the ipi/nivo combo.  It was pretty scary I must say, and later discovered this is a possible side-effect from the combo.  My doc was quite concerned, and prescribed a strong dose of prednisone.  I was going to start the prednisone the next day and ironically, my symptoms began to diminish that morning so I did not start the meds.  A later CT of chest revealed a bunch of inflammation.  Luckily I was able to stay on the nivo only as symptoms continued to slowly resolve themselves but it was a close call and I was almost denied further nivo treatments.  I had also had radiation therapy not long ago and it was determined that  the problem was more likely whats called radiation pneumonitis. I am still dealing with mild symptoms months later, with slight shortness of breath, and an intermittent hacking cough.

            Gary

              Maria C
              Participant

                Gary, thanks so much for sharing. Is "radiation pneumonitis" related to gamma knife procedures for brain mets? What type of radiation did you receive?

                I saw the pulmonary doctor on the team today and they are recommending a bronchoscopy for Monday to pinpoint exactly what all the actiivty around my lungs is all about. Could be inflammation but my oncologist is highly concerned it's an infection, particularly PCP, which is alarming. The difference in the CT scan of my lungs a month ago and the CT scan from earlier this week is significant.

                Sorry to hear you are still dealing with symptoms so many months later, but at least you are back on the nivo. That's fabulous! I know that's where my oncologist wants me to go, but we can't do a thing until we find out what we're dealing with re: the lungs. If it is PCP, that will mean heavy-duty antibiotics which will have their own side effects. It's a scary spiral….

                Sigh…

                 

                 

                Polymath
                Participant

                  Hi Maria,

                  My radiation was directly to the torso.  Several very large subcutaneous tumors that were causing lots of problems, with pain, and disfigurement.  I was warned prior to treatment, that lung damage is not uncommon when treating in the direct vicinity of lungs.  So this was not such a surprise with the benefit of 20/20 hindsight.

                  Gary

                  Maria C
                  Participant

                    Gary, I see. Sounds like yours was more related to the radiation than a toxicity from the immunotherapy…

                    Thanks again for sharing – Maria

                    pookerpb
                    Participant

                      My husband had pneumontis from Keytruda treatment back last July. I cant remember how many infusions he had but he had started them in Jan 2015 and had to stop temporarily in July for pneumonitis which can be a side effect from the autoimmune theray.

                      He was put on high dose steroid that tapered off and by 6 weeks was off them and continued back on treatment right asay without another issue with the lungs. The high dose steroid caused terrible insomnia but he said he felt like superman while taking them. We had gotten so much done around the house that 6 weeks after months of him felling like crap.

                       

                      pookerpb
                      Participant

                        My husband had pneumontis from Keytruda treatment back last July. I cant remember how many infusions he had but he had started them in Jan 2015 and had to stop temporarily in July for pneumonitis which can be a side effect from the autoimmune theray.

                        He was put on high dose steroid that tapered off and by 6 weeks was off them and continued back on treatment right asay without another issue with the lungs. The high dose steroid caused terrible insomnia but he said he felt like superman while taking them. We had gotten so much done around the house that 6 weeks after months of him felling like crap.

                         

                        pookerpb
                        Participant

                          My husband had pneumontis from Keytruda treatment back last July. I cant remember how many infusions he had but he had started them in Jan 2015 and had to stop temporarily in July for pneumonitis which can be a side effect from the autoimmune theray.

                          He was put on high dose steroid that tapered off and by 6 weeks was off them and continued back on treatment right asay without another issue with the lungs. The high dose steroid caused terrible insomnia but he said he felt like superman while taking them. We had gotten so much done around the house that 6 weeks after months of him felling like crap.

                           

                          Maria C
                          Participant

                            Pooerkpb – I know that "superman" feeling, lol – the first time I was thrown on steroids (when I got uveitis after the first infusion) I suddenly had all these crazy plans I was going to do – take a good-bye-to-the-world cross-country road trip, start a blog (not just any blog, but partner with some Big Immunotherapy Group), and other grandiose to-do's. I'm 2 days back on them now and while I am breathing easier and have renewed energy, my mind isn't quite spinning like that first time ๐Ÿ™‚

                            I will keep all posted about the results of the bronchoscopy – if it's an infection (treated with antibiotics) or inflammation (staying on steroids) – in case this is helpful to someone down the road.

                            Cheers –

                            Maria C
                            Participant

                              Pooerkpb – I know that "superman" feeling, lol – the first time I was thrown on steroids (when I got uveitis after the first infusion) I suddenly had all these crazy plans I was going to do – take a good-bye-to-the-world cross-country road trip, start a blog (not just any blog, but partner with some Big Immunotherapy Group), and other grandiose to-do's. I'm 2 days back on them now and while I am breathing easier and have renewed energy, my mind isn't quite spinning like that first time ๐Ÿ™‚

                              I will keep all posted about the results of the bronchoscopy – if it's an infection (treated with antibiotics) or inflammation (staying on steroids) – in case this is helpful to someone down the road.

                              Cheers –

                              Maria C
                              Participant

                                Pooerkpb – I know that "superman" feeling, lol – the first time I was thrown on steroids (when I got uveitis after the first infusion) I suddenly had all these crazy plans I was going to do – take a good-bye-to-the-world cross-country road trip, start a blog (not just any blog, but partner with some Big Immunotherapy Group), and other grandiose to-do's. I'm 2 days back on them now and while I am breathing easier and have renewed energy, my mind isn't quite spinning like that first time ๐Ÿ™‚

                                I will keep all posted about the results of the bronchoscopy – if it's an infection (treated with antibiotics) or inflammation (staying on steroids) – in case this is helpful to someone down the road.

                                Cheers –

                                Maria C
                                Participant

                                  Gary, I see. Sounds like yours was more related to the radiation than a toxicity from the immunotherapy…

                                  Thanks again for sharing – Maria

                                  Maria C
                                  Participant

                                    Gary, I see. Sounds like yours was more related to the radiation than a toxicity from the immunotherapy…

                                    Thanks again for sharing – Maria

                                    Polymath
                                    Participant

                                      Hi Maria,

                                      My radiation was directly to the torso.  Several very large subcutaneous tumors that were causing lots of problems, with pain, and disfigurement.  I was warned prior to treatment, that lung damage is not uncommon when treating in the direct vicinity of lungs.  So this was not such a surprise with the benefit of 20/20 hindsight.

                                      Gary

                                      Polymath
                                      Participant

                                        Hi Maria,

                                        My radiation was directly to the torso.  Several very large subcutaneous tumors that were causing lots of problems, with pain, and disfigurement.  I was warned prior to treatment, that lung damage is not uncommon when treating in the direct vicinity of lungs.  So this was not such a surprise with the benefit of 20/20 hindsight.

                                        Gary

                                        Maria C
                                        Participant

                                          Gary, thanks so much for sharing. Is "radiation pneumonitis" related to gamma knife procedures for brain mets? What type of radiation did you receive?

                                          I saw the pulmonary doctor on the team today and they are recommending a bronchoscopy for Monday to pinpoint exactly what all the actiivty around my lungs is all about. Could be inflammation but my oncologist is highly concerned it's an infection, particularly PCP, which is alarming. The difference in the CT scan of my lungs a month ago and the CT scan from earlier this week is significant.

                                          Sorry to hear you are still dealing with symptoms so many months later, but at least you are back on the nivo. That's fabulous! I know that's where my oncologist wants me to go, but we can't do a thing until we find out what we're dealing with re: the lungs. If it is PCP, that will mean heavy-duty antibiotics which will have their own side effects. It's a scary spiral….

                                          Sigh…

                                           

                                           

                                          Maria C
                                          Participant

                                            Gary, thanks so much for sharing. Is "radiation pneumonitis" related to gamma knife procedures for brain mets? What type of radiation did you receive?

                                            I saw the pulmonary doctor on the team today and they are recommending a bronchoscopy for Monday to pinpoint exactly what all the actiivty around my lungs is all about. Could be inflammation but my oncologist is highly concerned it's an infection, particularly PCP, which is alarming. The difference in the CT scan of my lungs a month ago and the CT scan from earlier this week is significant.

                                            Sorry to hear you are still dealing with symptoms so many months later, but at least you are back on the nivo. That's fabulous! I know that's where my oncologist wants me to go, but we can't do a thing until we find out what we're dealing with re: the lungs. If it is PCP, that will mean heavy-duty antibiotics which will have their own side effects. It's a scary spiral….

                                            Sigh…

                                             

                                             

                                          Polymath
                                          Participant

                                            Hi Maria,

                                            Not sure how much this will help, but its the first time I've seen it mentioned on the board.  Yes, I too experienced severe shortness of breath soon after my 4th infusion of the ipi/nivo combo.  It was pretty scary I must say, and later discovered this is a possible side-effect from the combo.  My doc was quite concerned, and prescribed a strong dose of prednisone.  I was going to start the prednisone the next day and ironically, my symptoms began to diminish that morning so I did not start the meds.  A later CT of chest revealed a bunch of inflammation.  Luckily I was able to stay on the nivo only as symptoms continued to slowly resolve themselves but it was a close call and I was almost denied further nivo treatments.  I had also had radiation therapy not long ago and it was determined that  the problem was more likely whats called radiation pneumonitis. I am still dealing with mild symptoms months later, with slight shortness of breath, and an intermittent hacking cough.

                                            Gary

                                            Maria C
                                            Participant

                                              Just circling back for the record and in case this is helpful to someone else down the road….the results of my bronchoscopy showed no signs of infection (particularly the PCP that was in question). It's inflammation and I am to stay on predisone until I can wean off and get on the nivo maintenance plan. Doctors monitoring closely (weekly) for blood draws, new emerging side effects, and overall appearance. 

                                              Am feeling for the first time in weeks that I will finally move on from this episode….plan in place and in motion…

                                               

                                              Maria C
                                              Participant

                                                Just circling back for the record and in case this is helpful to someone else down the road….the results of my bronchoscopy showed no signs of infection (particularly the PCP that was in question). It's inflammation and I am to stay on predisone until I can wean off and get on the nivo maintenance plan. Doctors monitoring closely (weekly) for blood draws, new emerging side effects, and overall appearance. 

                                                Am feeling for the first time in weeks that I will finally move on from this episode….plan in place and in motion…

                                                 

                                                Maria C
                                                Participant

                                                  Just circling back for the record and in case this is helpful to someone else down the road….the results of my bronchoscopy showed no signs of infection (particularly the PCP that was in question). It's inflammation and I am to stay on predisone until I can wean off and get on the nivo maintenance plan. Doctors monitoring closely (weekly) for blood draws, new emerging side effects, and overall appearance. 

                                                  Am feeling for the first time in weeks that I will finally move on from this episode….plan in place and in motion…

                                                   

                                              Viewing 5 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 byย MRF posting policies.

                                              Popular Topics