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Taking a break from nivo aka

Forums General Melanoma Community Taking a break from nivo aka

  • Post
    Mat
    Participant

      I'll call this post–taking a break from nivo, aka "high class" problems–particularly in light of the struggles of a number of folks in our Stage IV community.  As some of you know, I've had a good run on ipi-nivo since January 2016.  I've been fortunate with side effects, though I did spend most of the last 7 months on antibiotics due to a sinus infection that would resolve and return (thought to be a side effect due to sinus inflammation caused by ipi-nivo).  Starting in November, I started to experience unexplained pain in my right ankle, which progressed to pain and swelling and water retention from ankle to knee (again, just the right leg).  Have been on 20 mg of prednisone for a while now, which helps a bit (along with Advil).  Most recent PET this week continues to be stable (no concerning uptake) similar to my PETs in June and December.  My most recent nivo infusion was in early December.  I've had approximately 20 nivo infusions in total.  We decided to take a break and revisit every 2 weeks in light of the December PET.  Now that I've had the most recent PET and continue to have the inflammation (referred to as synovitis on the PET report), the thought is to continue to hold the nivo.  Makes me nervous.  I don't want the tail (synovitis) to wag the dog (melanoma).  Celeste had a recent blog post on a similar topic, but the study involved NED patients (I'm not NED) and only a small group (and only a short period).  Again, high class problems and ones that I gladly accept versus tougher circumstances.  Of course, I continue the ongoing discussions with my medical team.  Any thoughts on taking a break and/or experience with immunotherapy-induced synovitis are welcome.

    Viewing 14 reply threads
    • Replies
        Casitas1
        Participant

          Hi Mat, I have been dealing with treatment related Immune Arthritis(Sinovitis on scans) for the last 11 months. Check bio for history. Started Pembro in Jan. of 2016.(did ippi/nivo July 2015 and only made 2 infusions). I started to have the swelling about 3 months in and gradually got worse until I was on crutches last week! I had a dose of Inflixumab on Monday and most of the swelling has subsided. What a relief!!! Interesting that all my disease and swelling have been on my right side as well. I also have been dealing with sinus issues most of my life.(being a surfer) they were definitely enhanced during treatment. I will have to check Celeste blog for NED group.Doc said effects of treatment should wear off in 8 to 12 months. Ugh! There are a hand full of us at John Wayne that are NED and out of all of us only one has reoccurred and he went back on treatment and responded again. Had to gamble with the Remicade so I could get back to work.

          Best, Paul
          PS. Steroids kept the body aches at bay but did little for the joints….

          Casitas1
          Participant

            Hi Mat, I have been dealing with treatment related Immune Arthritis(Sinovitis on scans) for the last 11 months. Check bio for history. Started Pembro in Jan. of 2016.(did ippi/nivo July 2015 and only made 2 infusions). I started to have the swelling about 3 months in and gradually got worse until I was on crutches last week! I had a dose of Inflixumab on Monday and most of the swelling has subsided. What a relief!!! Interesting that all my disease and swelling have been on my right side as well. I also have been dealing with sinus issues most of my life.(being a surfer) they were definitely enhanced during treatment. I will have to check Celeste blog for NED group.Doc said effects of treatment should wear off in 8 to 12 months. Ugh! There are a hand full of us at John Wayne that are NED and out of all of us only one has reoccurred and he went back on treatment and responded again. Had to gamble with the Remicade so I could get back to work.

            Best, Paul
            PS. Steroids kept the body aches at bay but did little for the joints….

            Casitas1
            Participant

              Hi Mat, I have been dealing with treatment related Immune Arthritis(Sinovitis on scans) for the last 11 months. Check bio for history. Started Pembro in Jan. of 2016.(did ippi/nivo July 2015 and only made 2 infusions). I started to have the swelling about 3 months in and gradually got worse until I was on crutches last week! I had a dose of Inflixumab on Monday and most of the swelling has subsided. What a relief!!! Interesting that all my disease and swelling have been on my right side as well. I also have been dealing with sinus issues most of my life.(being a surfer) they were definitely enhanced during treatment. I will have to check Celeste blog for NED group.Doc said effects of treatment should wear off in 8 to 12 months. Ugh! There are a hand full of us at John Wayne that are NED and out of all of us only one has reoccurred and he went back on treatment and responded again. Had to gamble with the Remicade so I could get back to work.

              Best, Paul
              PS. Steroids kept the body aches at bay but did little for the joints….

                Mat
                Participant

                  Thanks Paul.  Very helpful.  So you've suspended the pembro infusions?  Similar to my dilemma–insist on treatment and diminish my ability to physically function (I walk 30 min to work!) or roll the dice on taking a break.

                  Casitas1
                  Participant
                    Yeah, I made it to 13 infusions and could hardly walk… Was Ned. after 7 and Doc said probly could of stopped at 10 I have a gardening route 40+ accounts and was walking a marathon a week before treatment. After treatment? Down to 15 and glad it’s winter and lawns are dormant. I took a chance with the Remicade but was able to surf and ride bikes with the family today! for the first time in a year. I think definitely worth the risk.
                    Casitas1
                    Participant
                      Yeah, I made it to 13 infusions and could hardly walk… Was Ned. after 7 and Doc said probly could of stopped at 10 I have a gardening route 40+ accounts and was walking a marathon a week before treatment. After treatment? Down to 15 and glad it’s winter and lawns are dormant. I took a chance with the Remicade but was able to surf and ride bikes with the family today! for the first time in a year. I think definitely worth the risk.
                      Casitas1
                      Participant
                        Yeah, I made it to 13 infusions and could hardly walk… Was Ned. after 7 and Doc said probly could of stopped at 10 I have a gardening route 40+ accounts and was walking a marathon a week before treatment. After treatment? Down to 15 and glad it’s winter and lawns are dormant. I took a chance with the Remicade but was able to surf and ride bikes with the family today! for the first time in a year. I think definitely worth the risk.
                        Mat
                        Participant

                          Thanks Paul.  Very helpful.  So you've suspended the pembro infusions?  Similar to my dilemma–insist on treatment and diminish my ability to physically function (I walk 30 min to work!) or roll the dice on taking a break.

                          Mat
                          Participant

                            Thanks Paul.  Very helpful.  So you've suspended the pembro infusions?  Similar to my dilemma–insist on treatment and diminish my ability to physically function (I walk 30 min to work!) or roll the dice on taking a break.

                          Polymath
                          Participant

                            Hi Mat,

                            Sorry to hear about the annoying side-effects.  I too just came off nivo in December after a year on the combo.  I'll see my specialist soon and have another PET/CT but I am really wondering what's next?  I'm relieved in a way, to try and clean-up, drug free, but like you, a little apprehensive about going without any treatment.  I'll get some direction soon, but for now I wish I could shake the annoying itchy skin I've been dealing with for so long and otherwise really don't feel any different.  I too consider myself lucky given difficulties others are having.  Best to you in the battle.

                            Gary

                            Polymath
                            Participant

                              Hi Mat,

                              Sorry to hear about the annoying side-effects.  I too just came off nivo in December after a year on the combo.  I'll see my specialist soon and have another PET/CT but I am really wondering what's next?  I'm relieved in a way, to try and clean-up, drug free, but like you, a little apprehensive about going without any treatment.  I'll get some direction soon, but for now I wish I could shake the annoying itchy skin I've been dealing with for so long and otherwise really don't feel any different.  I too consider myself lucky given difficulties others are having.  Best to you in the battle.

                              Gary

                              Polymath
                              Participant

                                Hi Mat,

                                Sorry to hear about the annoying side-effects.  I too just came off nivo in December after a year on the combo.  I'll see my specialist soon and have another PET/CT but I am really wondering what's next?  I'm relieved in a way, to try and clean-up, drug free, but like you, a little apprehensive about going without any treatment.  I'll get some direction soon, but for now I wish I could shake the annoying itchy skin I've been dealing with for so long and otherwise really don't feel any different.  I too consider myself lucky given difficulties others are having.  Best to you in the battle.

                                Gary

                                  Mat
                                  Participant

                                    Thanks Gary. 

                                    Mat
                                    Participant

                                      Thanks Gary. 

                                      Mat
                                      Participant

                                        Thanks Gary. 

                                      Bubbles
                                      Participant

                                        Hey Mat!  Sorry you are dealing with this.  Even first world problems suck in melanoma world.  Jubes certainly had more than her fair share of immune related side effects related to arthralgias and such.  But….is doing pretty well now – melanoma wise!  Yeah.  The recent article can give us all pause.  Then again, I'm still here.  Last dose of nivo in June of 2013. And…don't forget  –  there's also  this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

                                        Hang in there.  You are one tough cookie!  love, c

                                        Bubbles
                                        Participant

                                          Hey Mat!  Sorry you are dealing with this.  Even first world problems suck in melanoma world.  Jubes certainly had more than her fair share of immune related side effects related to arthralgias and such.  But….is doing pretty well now – melanoma wise!  Yeah.  The recent article can give us all pause.  Then again, I'm still here.  Last dose of nivo in June of 2013. And…don't forget  –  there's also  this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

                                          Hang in there.  You are one tough cookie!  love, c

                                          Bubbles
                                          Participant

                                            Hey Mat!  Sorry you are dealing with this.  Even first world problems suck in melanoma world.  Jubes certainly had more than her fair share of immune related side effects related to arthralgias and such.  But….is doing pretty well now – melanoma wise!  Yeah.  The recent article can give us all pause.  Then again, I'm still here.  Last dose of nivo in June of 2013. And…don't forget  –  there's also  this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

                                            Hang in there.  You are one tough cookie!  love, c

                                              Mat
                                              Participant

                                                Thanks Celeste.  This (your May blog post) is definitely encouraging.

                                                Mat
                                                Participant

                                                  Thanks Celeste.  This (your May blog post) is definitely encouraging.

                                                  Mat
                                                  Participant

                                                    Thanks Celeste.  This (your May blog post) is definitely encouraging.

                                                  cancersnewnormal
                                                  Participant

                                                    While it's a bummer to see anyone have these swelling side effects, it also makes me feel like less of an oddball. I did 4 doses of Ipi in 2013, and got on Keytruda as soon as it was approved (late 2014). Made it 29 doses before we took "a break", that has now turned into "finished unless we see melanoma progression". My inflammatory issues are also right side only… and also involved sinus. As you mentioned, I feel like these are "high class problems" compared to what others are having to deal with. The stress of "pausing" a drug that worked so well to erradicate the melanoma was pretty high. I've been off for 6 months now, and things are calming a little with each passing CT and brain MRI. Scanxiety levels are much higher than they were while still on Keytruda… I keep waiting for the next bomb to drop… but I am sloooowly starting to settle into some mental comfort that scans will likely still come back clean. I'm one notch more fortunate than you though… I am NED, with the exception of one wee little brain lesion that was treated in early Feb 2016. Docs are pretty confident that it's dead tissue, but I'd rather it go away, like all of the others did. I do understand your tension about taking a break, but the inflammation is a good sign that your body is still on the attack. That said, when the inflammatory arthritis got so bad that I was losing sleep, my knee doubled in size, and I couldn't get through my normal daily routine without contant pain, my oncologist sent me to a rheumatologist. He put me on Sulfasalazine and Naproxen. I overlapped the two drugs for about a month, until the Sulfasalazine had time to begin taking care of the trouble on its own. I'm on 500 mg three times per day, and am able to live pain free like a normal human once again. In fact, I've picked up my cycling again. Without the horrific swelling and joint pain, I've been able to comfortably rebuild the muscles that help stabilize my joints, making things even better. Oddly enough, the Sulfasalazine even cleared out the sinus inflammation, so I don't have to saline rinse my nose 5 times each day or wear a Breath-Right strip to sleep! Docs didn't seem to think the sinus swelling had anything to do with the inflammatory joint issues…. buuuuuut… after reading what patient experiences are….. I'm getting more and more confident, that this is an oddly overlooked side effect.

                                                    Debwray posted this article not long ago: http://www.futuremedicine.com/doi/full/10.2217/imt-2016-0117?src=recsys

                                                    Here is another article about the inflammatory side effects: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051426/

                                                    While it's terrifying to think of the melanoma coming back, it's also good that you and your docs are on top of attempts to control the inflammation, as it can cause permanent joint damage.

                                                      Mat
                                                      Participant

                                                        Thanks Niki.  Very helpful.  Yes, I've become very familiar with the daily sinus rinse.  Now, if I forget to do it, it feels like I haven't showered!  Thanks for the info on your arthritis meds.  My next stop is to the rheumatologist.  I'm really not looking to add more meds, but we'll see.

                                                        Mat
                                                        Participant

                                                          Thanks Niki.  Very helpful.  Yes, I've become very familiar with the daily sinus rinse.  Now, if I forget to do it, it feels like I haven't showered!  Thanks for the info on your arthritis meds.  My next stop is to the rheumatologist.  I'm really not looking to add more meds, but we'll see.

                                                          Mat
                                                          Participant

                                                            Thanks Niki.  Very helpful.  Yes, I've become very familiar with the daily sinus rinse.  Now, if I forget to do it, it feels like I haven't showered!  Thanks for the info on your arthritis meds.  My next stop is to the rheumatologist.  I'm really not looking to add more meds, but we'll see.

                                                          cancersnewnormal
                                                          Participant

                                                            While it's a bummer to see anyone have these swelling side effects, it also makes me feel like less of an oddball. I did 4 doses of Ipi in 2013, and got on Keytruda as soon as it was approved (late 2014). Made it 29 doses before we took "a break", that has now turned into "finished unless we see melanoma progression". My inflammatory issues are also right side only… and also involved sinus. As you mentioned, I feel like these are "high class problems" compared to what others are having to deal with. The stress of "pausing" a drug that worked so well to erradicate the melanoma was pretty high. I've been off for 6 months now, and things are calming a little with each passing CT and brain MRI. Scanxiety levels are much higher than they were while still on Keytruda… I keep waiting for the next bomb to drop… but I am sloooowly starting to settle into some mental comfort that scans will likely still come back clean. I'm one notch more fortunate than you though… I am NED, with the exception of one wee little brain lesion that was treated in early Feb 2016. Docs are pretty confident that it's dead tissue, but I'd rather it go away, like all of the others did. I do understand your tension about taking a break, but the inflammation is a good sign that your body is still on the attack. That said, when the inflammatory arthritis got so bad that I was losing sleep, my knee doubled in size, and I couldn't get through my normal daily routine without contant pain, my oncologist sent me to a rheumatologist. He put me on Sulfasalazine and Naproxen. I overlapped the two drugs for about a month, until the Sulfasalazine had time to begin taking care of the trouble on its own. I'm on 500 mg three times per day, and am able to live pain free like a normal human once again. In fact, I've picked up my cycling again. Without the horrific swelling and joint pain, I've been able to comfortably rebuild the muscles that help stabilize my joints, making things even better. Oddly enough, the Sulfasalazine even cleared out the sinus inflammation, so I don't have to saline rinse my nose 5 times each day or wear a Breath-Right strip to sleep! Docs didn't seem to think the sinus swelling had anything to do with the inflammatory joint issues…. buuuuuut… after reading what patient experiences are….. I'm getting more and more confident, that this is an oddly overlooked side effect.

                                                            Debwray posted this article not long ago: http://www.futuremedicine.com/doi/full/10.2217/imt-2016-0117?src=recsys

                                                            Here is another article about the inflammatory side effects: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051426/

                                                            While it's terrifying to think of the melanoma coming back, it's also good that you and your docs are on top of attempts to control the inflammation, as it can cause permanent joint damage.

                                                            cancersnewnormal
                                                            Participant

                                                              While it's a bummer to see anyone have these swelling side effects, it also makes me feel like less of an oddball. I did 4 doses of Ipi in 2013, and got on Keytruda as soon as it was approved (late 2014). Made it 29 doses before we took "a break", that has now turned into "finished unless we see melanoma progression". My inflammatory issues are also right side only… and also involved sinus. As you mentioned, I feel like these are "high class problems" compared to what others are having to deal with. The stress of "pausing" a drug that worked so well to erradicate the melanoma was pretty high. I've been off for 6 months now, and things are calming a little with each passing CT and brain MRI. Scanxiety levels are much higher than they were while still on Keytruda… I keep waiting for the next bomb to drop… but I am sloooowly starting to settle into some mental comfort that scans will likely still come back clean. I'm one notch more fortunate than you though… I am NED, with the exception of one wee little brain lesion that was treated in early Feb 2016. Docs are pretty confident that it's dead tissue, but I'd rather it go away, like all of the others did. I do understand your tension about taking a break, but the inflammation is a good sign that your body is still on the attack. That said, when the inflammatory arthritis got so bad that I was losing sleep, my knee doubled in size, and I couldn't get through my normal daily routine without contant pain, my oncologist sent me to a rheumatologist. He put me on Sulfasalazine and Naproxen. I overlapped the two drugs for about a month, until the Sulfasalazine had time to begin taking care of the trouble on its own. I'm on 500 mg three times per day, and am able to live pain free like a normal human once again. In fact, I've picked up my cycling again. Without the horrific swelling and joint pain, I've been able to comfortably rebuild the muscles that help stabilize my joints, making things even better. Oddly enough, the Sulfasalazine even cleared out the sinus inflammation, so I don't have to saline rinse my nose 5 times each day or wear a Breath-Right strip to sleep! Docs didn't seem to think the sinus swelling had anything to do with the inflammatory joint issues…. buuuuuut… after reading what patient experiences are….. I'm getting more and more confident, that this is an oddly overlooked side effect.

                                                              Debwray posted this article not long ago: http://www.futuremedicine.com/doi/full/10.2217/imt-2016-0117?src=recsys

                                                              Here is another article about the inflammatory side effects: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051426/

                                                              While it's terrifying to think of the melanoma coming back, it's also good that you and your docs are on top of attempts to control the inflammation, as it can cause permanent joint damage.

                                                              BrianP
                                                              Participant

                                                                Matt,

                                                                Sorry for the "high class" problems you've been having.  Hopefully you'll find some quick relief with the vacation.  Funny you mentioned the sinus issue because I've been dealing with a sinus issue for a little over a week now.  Think mine is still the old fashion winter sinus variety but I'll definitely keep an eye on it now after your post and what some of the others have posted. 

                                                                Brian

                                                                  Mat
                                                                  Participant

                                                                    Thanks Brian.  If it persists, best to see an ear, nose and throat doctor in coordination with your onc.  A course of antibiotics and daily sinus rinse seems to be the protocal.

                                                                    Mat
                                                                    Participant

                                                                      Thanks Brian.  If it persists, best to see an ear, nose and throat doctor in coordination with your onc.  A course of antibiotics and daily sinus rinse seems to be the protocal.

                                                                      Mat
                                                                      Participant

                                                                        Thanks Brian.  If it persists, best to see an ear, nose and throat doctor in coordination with your onc.  A course of antibiotics and daily sinus rinse seems to be the protocal.

                                                                      BrianP
                                                                      Participant

                                                                        Matt,

                                                                        Sorry for the "high class" problems you've been having.  Hopefully you'll find some quick relief with the vacation.  Funny you mentioned the sinus issue because I've been dealing with a sinus issue for a little over a week now.  Think mine is still the old fashion winter sinus variety but I'll definitely keep an eye on it now after your post and what some of the others have posted. 

                                                                        Brian

                                                                        BrianP
                                                                        Participant

                                                                          Matt,

                                                                          Sorry for the "high class" problems you've been having.  Hopefully you'll find some quick relief with the vacation.  Funny you mentioned the sinus issue because I've been dealing with a sinus issue for a little over a week now.  Think mine is still the old fashion winter sinus variety but I'll definitely keep an eye on it now after your post and what some of the others have posted. 

                                                                          Brian

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