Mucositis is a very painful complication of chemotherapy. Strictly speaking it can occur anywhere in the gastro-intestinal tract, but it is most prominent in the mouth, where it is called stomatitis. The surfaces that line the mouth and tongue become red, swollen and covered in ulcers. The pain can be so severe that it is very hard to eat, drink and speak. Stage 1 and 2 are mild and characterised by soreness and the beginning of ulceration. During stage 3 and 4, oral mucositis is more severe. At stage 3, sufferers cannot tolerate solid food so switch to a liquid only diet. Eating is not possible at stage 4 so people my need further help getting enough nutrients. My mucositis was stage 2 bordering on stage 3 before I started definitive treatment.
So what treatment is useful? The problem is that there have been hardly any decent clinical trials. I can understand why. If somebody asked me when I was suffering if I wanted to participate in a clinical trial I should have refused and asked for everything they had. The pain was so urgent, that I had no time to take part in a trial. Besides all the treatments are petty cheap so I'll have all of them in the hope that something would work.
That being so, there is an expensive drug that has been proven to work in a clinical trial and a cheap one that makes no difference. Simple chlorhexidine mouthwashes make no difference, but palifermin reduced the cumulative incidence of moderate to severe (grade 2 or higher) mucositis (44% vs. 88%; P < 0.001; difference, -44 percentage points [95% CI, -71 to -16 percentage points) and severe (grade 3 or 4) mucositis (13% vs. 51%; P = 0.002; difference, -38 percentage points [CI, -67 to -9 percentage points]). The trouble is that palifermin, which is a recombinant protein - keratinocyte growth factor - costs over $750 a shot and it is only licensed for transplants.
There are other, smaller trials that suggest that Calcium phosphate mouthwashes or allopurinol mouthwashes might be better than placebo - but no follow up studies seem to have been done.
So are there simple rules for preventing and treating mucositis? The first is to have good oral hygiene. A visit to the dentist beforehand is a good idea. Make sure there are no hidden caries and smooth down any rough edges likely to start ulcers.
Tooth cleaning is essential, but becomes difficult even with a soft brush when the gums get painful. A damp soft gauze is an alternative to a brush. Likewise flossing may be impossible. Mouthwashes with an alcohol based fluid is very painful, but Difflam, which contains a local anesthetic works better. Even cold water rinses are better than nothing. Bongela is useful to rub on sore spots and may help you to eat when you didn't think it possible.
Mucositis often accompanies neutropenia and this allows infection to set in. Nystatin drops, amphotericin lozenges, or fluconazole may be useful to prevent or treat thrush, which is especially likely if you are having steroids as part of your regimen. Mouth bacteria can be hit by metronidazole and a penicillin, and of course you have to be very wary of herpes simplex.
In my case when the ulcers got really painful and I started to get heartburn, I guessed it was Candida and started fluconazole and the next day added metronidazole and a penicillin for complete cover. Thankfully things are getting better today.
I think what I shall do for the next course is to monitor my white count and see when the neutrophil nadir occurs, planning to start G-CSF if I need it, or prophylactic antimicrobials if I don't.