Canker Sores

So glad that things are responding well for David!  Mucosal irritation and dry mouth are fairly common with immunotherapy….outright oral lesions, not as much, so some docs do not see them as side effects.  However, THEY ARE!!!!  I dealt with pretty awful oral lesions during my 2 1/2 year trial on nivo.  They were exactly as you describe….I started with a weird taste…then rawness and then outright ulcerations….always worse just after infusion…getting a little better…then BAM…back at it once another infusion was given.  They began around dose 8 and were full force by 10.  I too, lost a lot of weight that I could ill afford.

Here's an excerpt of a post I wrote: 

Recheck after completion of meds =  9/13/2013

   Learned that I was the ONLY patient out of 120 who had developed mouth ulcers.  Others had developed sore, tender gums and mouth with mucositis…but no ulcers!!!  So, there's hope for the rest of you!!!  Anyhow, though Weber (and my dentist) continued to be very impressed/aghast with the ulcers remaining after treating with Peridex and 24 hours worth of Valcyclovir…I am happy since they are ever so much better and almost pain free…..finally.  Weber also spontaneously noted that my vitiligo had continued to increase since my last visit.
Note:  There has been some discussion in the press, on boards and with Dr. Weber regarding 5 patients out of the 120 in my study who developed shingles.  The jury is still out on whether that is a direct result of anti-PD1, since the age of most of the patients in the study is such that they are the folks who would be most likely to contract shingles with anti-PD1 or without it.
TODAY
   Feeling well. Running 3-4 miles at least 3-4 times a week…occasionally more often.  My mouth ulcers remained minimal for about 4 weeks, but then began to rear their ugly head again.  Restarting the antibacterial mouth wash did nothing to help.  Currently, they are not as bad as they had been, but I do have a fairly large eroded place with exudate to both sides of my inner cheeks by my molars and under my tongue is raw, red, and tender.  Perhaps the meds that I thought so highly of did nothing, and it was just time for the lesions to wane.  OR…..perhaps I HAD developed a secondary infection in the lesions since they had been there for over 4 months…nonstop….that the meds did help with…and this is just another anti-PD1 flare, with no infection.  Just anti-PD1.  Doing its thing.  In the words of Weber…."This stuff is WEIRD!!!"

As you can see in that report….after dealing with them for a couple years…my dentist insisted I treat with an oral antibiotic rinse (peridex) and a round of acyclovir (for herpetic lestions) in case a super infection had developed.  To be honest, it didn't help much…stopping the infusions in June of 2013….just because that was the end point (2 1/2 years)……did….gradually.

Sadly, I don't have any really good solution for you.  I did oral warm salt water washes and meticulous oral care….which I think is important.  I tried every "magic mouthwash" prep you can name…..benadryl mixed with equal parts maalox…which we use on babies with thrush and hand/foot/and mouth disease….and it helped a bit.  You can also get that mixture with lidocaine added.  I tried nystatin (an anti-fungal) alone and in the mix.  I even tried lidocaine lollipops that you rub on the painful area….for me they didn't really numb the pain…just made my mouth feel weird and gave me heart palpitations!!!  

Truly the best thing that helped me was something I had learned in taking care of my little cancer patients on traditional chemo where mouth ulcers are common….I liked things like dill pickles…as did they.  I know!  Sounds like it would burn, right?  Lemonade was a staple.  Warm tea.  Cool puddings and ice cream.  

Though I have been off therapy (and remain NED…so there's some good news!) for more than 4 years….I still deal with dry mouth and occasionally have oral flares…though never so bad as when on therapy.  

Not sure I've helped you much…but I wish you both well.  Celeste