Taking a break from nivo aka

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….

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….

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….

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

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

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

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

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

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

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.

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.

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.

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

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

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