Mucositis won't go away after treatment

Where to start?
Artray, congratulations to your husband for getting through the treatments, and a hearty salute to you for being the loving caregiver that continues to seek answers for him! I believe your job may be harder than his, frankly.

Regarding the mucous, which I will address momentarily, be advised that your husband is not alone.

I am a squamous cell carcinoma survivor, having had half of my tongue replaced with stuff from my arm, followed by the same sort of regimen your husband apparently experienced: seven weeks of radiation along with a number of chemotherapy treatments (cisplatin in my case).

My surgery was in October of '05, followed virtually immediately by the rads and chemo, which lasted well into January of '06.

Let me begin by saying, in all honesty, that I would be quite concerned about the 'lit areas'. I had the surgery in an attempt to avoid that possibility, and when I had the surgery, they took out not only half of my tongue but some lymph nodes in my neck, where they also found some positive activity.

Perhaps, with all of this time gone by, they are more confident about the positive effects of the chemo and rads. In '05 - '06, frankly, these treatments, in my case, were dedicated to removing any strays missed by the surgery.

That said, I know that every case is different, and I am hopeful that your husband's doctors are much more intelligent about this situation than I am.

(I would not get overly worried, Artray, but I WOULD follow up on this, as I am sure you will. It is true, and I am someone who knows firsthand, that 'lit areas' can be false positives.)

As for the mucous build up, yes, it is quite natural, and yes, it tends to ease up as time goes by, at least in my experience.

During my treatment and for some time afterward, I could pretty much set the clock by the times I woke to go to the bathroom to eject the stuff. Every two hours in my case.

Four years later, it is still there, but not with such severity.

And, this is after the fact, but I took on two shots of Amifostine (sp?) prior to each day's rad treatments in the hopes of saving my saliva glands. This treatment was not exactly endorsed by my doctors, but was offered, and I took it. (The medical profession, at least at that time, was ambivalent about its positive effects in this regard.)

I do have saliva action, for what it's worth.

Getting to the root of your husband's problem (and, thus, yours) I advise a rigorous oral hygiene regimen, using toothpaste and mouthwaste specially designed to reduce/eliminate dry mouth. I advise carrying a bottle of water everywhere and drinking lots of water with meals (my OncoMan has advised that seltzer water is better even than water, and that sports drinks can actually lead to leeching of certain important vitams/elements, by the way).

I started out trying the recommended lemon drops for getting saliva to flow, but frankly, they were too tart, and I feared swallowing them and choking to death . I switched to TicTacs, even though others have rightly reminded me that they are not good for your teeth. I now use Altoids, and I am sure my friends will say the same regarding the sugar content, but they help me moisturize my mouth while also sweetening my otherwise death-smelling breath, to be blunt about it.

I advise that your husband do his very best not to rely on the peg tube, although I still have one nearly four years later. It becomes like a crutch, and the worst effect is potential tightening of the jaw muscles from lack of use. That is not to say that he should get rid of it. I agree with you: it can be a blessing of sorts and should not be removed before its time. I am only saying that if your husband can eat, he should do his best to do so rather than cratering to the ease of the tube.

I would suggest perhaps cutting back on the normal sorts of meals and concentrating on nutrition-rich things that do not hurt his throat. Experiment with smoothies and yogurt and ice cream and broths and soups, things that are not spicy or 'edgy'. Meat, for example, can be an issue when you are starting to eat again.

For the phlegm (mucous) I simply went to the bathroom, gargled, and ejected it. Still do. I got used to getting up every two hours for a time, and that was fine. Eventually, and I am sorry I don't have a timetable for you, it dissipated. Again, it still occurs, but I do not wake in the night, and it is probably once or twice a day now.

I can live with that.

I wish your husband, you, and your family and friends, the very best, Artray. You have come to a good place, and I am sure that you will get a lot of good advice regarding this subject.

In the meantime, I WOULD approach the 'lit areas' and the sore throat with serious and determined intent.

Take care,

Joe