Treatments for mouth sores?

Christine,

Sorry about your side effects.  It sounds an awful lot like what Celeste (Bubbles) experienced on her trial.  Hopefully she'll chime in with any thing that worked for her.  I'm sure she probably talked about it on her blog but might be tough to find.  Maybe you can PM her if she doesn't chime in soon.

Good luck,

Brian

Christine,

Sorry about your side effects.  It sounds an awful lot like what Celeste (Bubbles) experienced on her trial.  Hopefully she'll chime in with any thing that worked for her.  I'm sure she probably talked about it on her blog but might be tough to find.  Maybe you can PM her if she doesn't chime in soon.

Good luck,

Brian

Christine,

Sorry about your side effects.  It sounds an awful lot like what Celeste (Bubbles) experienced on her trial.  Hopefully she'll chime in with any thing that worked for her.  I'm sure she probably talked about it on her blog but might be tough to find.  Maybe you can PM her if she doesn't chime in soon.

Good luck,

Brian

Christine – my husband used "magic mouthwash" to help with mouth sores.  I believe it was a compounded mixture of lidocaine, maalox and diphenhydramin – each dr seems to have their own formula.  Your dentist may also be able to provide suggestions.  My husband was unable to eat solid food but was able to drink liquids and primarily used Unjury protein drink products (available online) to keep up his weight.  Take care.

Ann

Christine – my husband used "magic mouthwash" to help with mouth sores.  I believe it was a compounded mixture of lidocaine, maalox and diphenhydramin – each dr seems to have their own formula.  Your dentist may also be able to provide suggestions.  My husband was unable to eat solid food but was able to drink liquids and primarily used Unjury protein drink products (available online) to keep up his weight.  Take care.

Ann

Christine – my husband used "magic mouthwash" to help with mouth sores.  I believe it was a compounded mixture of lidocaine, maalox and diphenhydramin – each dr seems to have their own formula.  Your dentist may also be able to provide suggestions.  My husband was unable to eat solid food but was able to drink liquids and primarily used Unjury protein drink products (available online) to keep up his weight.  Take care.

Ann

Hi Christine,

So sorry you are going through mouth ulcers (and apparently other issues!!).  Brian is right…(Use the search bubble at top left of my blog and "mouth ulcers", to find more info)….I was the only one in my Nivo/Opivo trial to develop actual mouth ulcers, though several did experience mucositis (dry, irritated mouth).  Since then, however, many people have contacted me with questions about their mouth issues while on anti-PD1.  It actually makes sense that some of us develop them, just as some develop colitis, since the GI tract is really a long tube that starts at the mouth. Not sure how much this will help you, but here goes: 

After my second infusion of Opdivo, I developed a "dry mouth" with a "weird taste".  Strangely enough, grabbing a lemonade from a quickie mart while rushing back to the airport after an infusion made it better.  However, by dose 8 I had acutal ulcers (mostly on cheeks and tongue).  They would come and go…but gradually became worse and lasted longer over time.  (I was on anti-PD1 from December 2010 through June of 2013.)  When actual lesions were present spicy, acidic foods were not pleasant!  Warm saline rinses helped.  I tried a variey of "magic mouthwashes"….all of which try to numb and apply a protective coating to the mouth.  There are a variety of these:  The simplest is equal parts maalox and liquid benadryl that you swish and spit.  Some contain lidocaine (numbing agent) and others contain nystatin (an anti-fungal).  None of these helped me very much.  In my opinion…initially the lesion are NOT infected.  They are due to an immune response.  Therefore, it makes sense that unless the lesions BECOME infected (which is likely enough in the warm, dark mouth) anti-fungals, anti-virals, and anti-biotics will not help much.  Fairly early on, I tried nystatin anyway and it provided little benefit.  My dentist was actually more alarmed by my condition than my oncologist and had lidocaine lollipops compounded for me.  They numbed things up a bit but after waking out of a sleep with heart palpitations (a known side effect of lidocaine) I decided they weren't worth it!!  But after struggling with ulcers for 2 years….this happened:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/09/nivolumab-anti-pd1-trial33-months-later.html

In desperation with the help of my dentist, I did do a round of Peridex mouth wash (an anti-bacterial) and Valcyclovir (anti-viral/herpetic agent) and it helped!  Unfortunately, doing both with no culture before starting was a very unscientific method….but I was tired!!!!  Since completion of anti-Pd1 in June 2013, I have had various flares of rashes and mouth ulcers.  They were of greater intensity and duration at first…having become much less troublesome since.  Sadly, I can't give you a "cure"….but as none of these "treatments" will harm you, you could certainly give them a try to see if you can find some relief!!! 

Hang in there.  I wish you well.  Yours, Celeste

Hi Christine,

So sorry you are going through mouth ulcers (and apparently other issues!!).  Brian is right…(Use the search bubble at top left of my blog and "mouth ulcers", to find more info)….I was the only one in my Nivo/Opivo trial to develop actual mouth ulcers, though several did experience mucositis (dry, irritated mouth).  Since then, however, many people have contacted me with questions about their mouth issues while on anti-PD1.  It actually makes sense that some of us develop them, just as some develop colitis, since the GI tract is really a long tube that starts at the mouth. Not sure how much this will help you, but here goes: 

After my second infusion of Opdivo, I developed a "dry mouth" with a "weird taste".  Strangely enough, grabbing a lemonade from a quickie mart while rushing back to the airport after an infusion made it better.  However, by dose 8 I had acutal ulcers (mostly on cheeks and tongue).  They would come and go…but gradually became worse and lasted longer over time.  (I was on anti-PD1 from December 2010 through June of 2013.)  When actual lesions were present spicy, acidic foods were not pleasant!  Warm saline rinses helped.  I tried a variey of "magic mouthwashes"….all of which try to numb and apply a protective coating to the mouth.  There are a variety of these:  The simplest is equal parts maalox and liquid benadryl that you swish and spit.  Some contain lidocaine (numbing agent) and others contain nystatin (an anti-fungal).  None of these helped me very much.  In my opinion…initially the lesion are NOT infected.  They are due to an immune response.  Therefore, it makes sense that unless the lesions BECOME infected (which is likely enough in the warm, dark mouth) anti-fungals, anti-virals, and anti-biotics will not help much.  Fairly early on, I tried nystatin anyway and it provided little benefit.  My dentist was actually more alarmed by my condition than my oncologist and had lidocaine lollipops compounded for me.  They numbed things up a bit but after waking out of a sleep with heart palpitations (a known side effect of lidocaine) I decided they weren't worth it!!  But after struggling with ulcers for 2 years….this happened:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/09/nivolumab-anti-pd1-trial33-months-later.html

In desperation with the help of my dentist, I did do a round of Peridex mouth wash (an anti-bacterial) and Valcyclovir (anti-viral/herpetic agent) and it helped!  Unfortunately, doing both with no culture before starting was a very unscientific method….but I was tired!!!!  Since completion of anti-Pd1 in June 2013, I have had various flares of rashes and mouth ulcers.  They were of greater intensity and duration at first…having become much less troublesome since.  Sadly, I can't give you a "cure"….but as none of these "treatments" will harm you, you could certainly give them a try to see if you can find some relief!!! 

Hang in there.  I wish you well.  Yours, Celeste

Hi Christine,

So sorry you are going through mouth ulcers (and apparently other issues!!).  Brian is right…(Use the search bubble at top left of my blog and "mouth ulcers", to find more info)….I was the only one in my Nivo/Opivo trial to develop actual mouth ulcers, though several did experience mucositis (dry, irritated mouth).  Since then, however, many people have contacted me with questions about their mouth issues while on anti-PD1.  It actually makes sense that some of us develop them, just as some develop colitis, since the GI tract is really a long tube that starts at the mouth. Not sure how much this will help you, but here goes: 

After my second infusion of Opdivo, I developed a "dry mouth" with a "weird taste".  Strangely enough, grabbing a lemonade from a quickie mart while rushing back to the airport after an infusion made it better.  However, by dose 8 I had acutal ulcers (mostly on cheeks and tongue).  They would come and go…but gradually became worse and lasted longer over time.  (I was on anti-PD1 from December 2010 through June of 2013.)  When actual lesions were present spicy, acidic foods were not pleasant!  Warm saline rinses helped.  I tried a variey of "magic mouthwashes"….all of which try to numb and apply a protective coating to the mouth.  There are a variety of these:  The simplest is equal parts maalox and liquid benadryl that you swish and spit.  Some contain lidocaine (numbing agent) and others contain nystatin (an anti-fungal).  None of these helped me very much.  In my opinion…initially the lesion are NOT infected.  They are due to an immune response.  Therefore, it makes sense that unless the lesions BECOME infected (which is likely enough in the warm, dark mouth) anti-fungals, anti-virals, and anti-biotics will not help much.  Fairly early on, I tried nystatin anyway and it provided little benefit.  My dentist was actually more alarmed by my condition than my oncologist and had lidocaine lollipops compounded for me.  They numbed things up a bit but after waking out of a sleep with heart palpitations (a known side effect of lidocaine) I decided they weren't worth it!!  But after struggling with ulcers for 2 years….this happened:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/09/nivolumab-anti-pd1-trial33-months-later.html

In desperation with the help of my dentist, I did do a round of Peridex mouth wash (an anti-bacterial) and Valcyclovir (anti-viral/herpetic agent) and it helped!  Unfortunately, doing both with no culture before starting was a very unscientific method….but I was tired!!!!  Since completion of anti-Pd1 in June 2013, I have had various flares of rashes and mouth ulcers.  They were of greater intensity and duration at first…having become much less troublesome since.  Sadly, I can't give you a "cure"….but as none of these "treatments" will harm you, you could certainly give them a try to see if you can find some relief!!! 

Hang in there.  I wish you well.  Yours, Celeste