I am a cancer surviver but desperately need advice on a course of action or procedure to alleviate excessive and thick mucus and a persistent sickening sweet taste in my mouth, which has gotten a lot worse in the last two weeks. Following intensive internet searches and discussions with many doctors I had about given up until reading the 2005 Mucositis
Guidelines, MASCC/ISOO, for which you are a principal author. My symptoms aredescribed in the Guideline and I believe some of your treatment solutions could help me.
However, I have not been able to find a local physician who even understands my problem - most seem to think it's a "normal" side-effect from the radiation and chemotherapy.

On November 7, 2007 I had my tonsils removed in Huntsville, Alabama. A squamous-cell cancer tumor was discovered in one tonsil. I was given radiation five times in a week and one chemo treatment once a week for seven weeks. I was fitted with a feeding tube, which became infected. The gastroenterologist
I was seeing at that time completely ignored my complaints that the feeding
tube was causing soreness at the insertion site and making me feel nausea. The site of the feeding tube became so infected that it pushed out of my body. I've beenoff a feeding tube for about 6 months now. I'm wondering if I could have
another type infection now which could have increased the mucus I now have. The increase in mucus has been going on for about 2 weeks. Since the cancer procedure, I have experienced a continuous production of thick mucus-like saliva, but now it is getting worse. It almost chokes me so that I am forced to spit out constantly. Also the mucus has changed flavor (or is it damaged taste buds?) from very, very salty to very, very
sweet. Now, approximately 1-1/2 years since the cancer procedure, I have no desire
for food (though I make myself have three meals a day). I would greatly appreciate any information/suggestions you might have in helping me with this situation. Also, if you can suggest what type physician I should go to for help, I would appreciate it very much. I have been to My general practitioner, an ENT physician, and a gastroenterologist to
no avail.

Thank you, in advance, for any help or suggestions you can give me.

One of the most common side effects of radiation we all seem to get is increased thick mucus or perhaps a better way to describe it is a decrease in thin saliva production making the thick mucus more apparent. I too was left with more thick mucus than thin but mine is more of a nuisance than what you are experiencing. Not sure if there is a cure but I do know that some things make mine worse, like milk which I love and some things seem to make it less noticeable, like citrus, especially oranges. Since we all can be damaged and therefore affected differently you might want to at least try to ID those incidents which make more mucus and avoid them. That is, of course, after you have exhausted any medically related causes.

I also have more of a sweet taste but again it doesn't bother me. I taste sweet in almost anything now. Just last night I was commenting on how I could taste a sweetness in my baked potato with salt and butter.

julieann

Yes you could have a secondary infection that is causing increased mucous. As the posts here all indicate: Thick saliva that chokes you and mucous that chokes you are commonplace side effects of radiation (why your doctors are not paying attention.) My first time round with cancer, I dealt with the mucous by gargling with seltzer water and spitting it out. This second time round, the mucous is much worse and the saliva is thick white ropes. I still use the seltzer water but also a home suction machine (insurance covered it for me- only runs $6 a month rental after initial $25 set up charge ) so you might ask your doctor about prescribing one for you. However just last week my MO (the chemo doctor) noted a slight "bad" smell on my breath and that my mucous had changed from clear white to slight yellow and diagnosed a secondary infection of necrotic tissue with anaerobic bacteria - he put me on antibiotics (clindamycin) which is generic Cleocin. within days the mucous has gotten clear and the saliva less ropy. so it would not hurt to bug your ENT or better yet RO or MO. so those are my three suggestions. Hope one of them works for you
charm

Julieann,
I am over six years out of treatment and definitely have more mucous issues than before Tx. I have mentioned this to Brian and he does too. It's a side effect of the radiation. I had a really good recovery of my salivary glands so I am not certain that there a link. The drugs that they can give you to reduce muous, such as Guafisen, also exacerbate dry mouth so they're a mixed bag. I also get a lot more infections now, primarily in my right ear, near where the radiation field was. This is also allergy season so that might play a role as well.

Thank you for your reply. I, too, wondered why my mucus was increasing so far from my treatments, and it's exactly like you said, so that makes me feel better. After I visit a few more doctors this week, I'll get back with you and let you know if they had any suggestions.

I should clarify - it's more like phlegm and having to clear my throat a lot, especially in the morning. It's not like the thick, stringy mucous that I had post Tx when my salivary glands were fried from the radiation.

I had to take a course of prednisone a few weeks ago because of fluid buildup in my right ear and it seemed to mitigate the phlegm a lot. Prednisone is a pretty powerful drug however and I had to other, unanticipated, side effects from it.

I'm 6 month post treatment for stage IV tonsil / HPV related. Thirty five radiation treatments and 7 cisplatin treatments/no surgery. After complaining about what I thought was mucus, a nurse told me it may well be the viscosity of my saliva and not mucus. I'm not sure if it's mucus or thick saliva.... but mouth moisturizing sprays have provided temp relief - particularly, for me, Thayers mouth spray available via web

Hi Julie - I see you're from N. Va.; I live in DC - would love to talk w/you personally re: referral to dentist. How might that happen? I certainly don't mind providing an e mail address / not sure what rules of posting may or may not apply - first day posting. By the way, my radiation doc has referred me to acupuncture saying some folks swear by it for increasing saliva production / reducing mucus.

Hi Tom:

I live in Alabama, not North Carolina. Not sure why you thought that. About the dental issue, when consulting with a doctor at the University of Connecticut Health Center via Internet, he/she (can't tell by the name) suggested the mucus problem be addressed by a specialist in Oral Medicine. They are usually located at dental schools. She provided a name of a doctor at the University of Alabama in Birmingham, AL, and I am trying to get an appointment with him/her now. I believe these type doctors deal with mucositis and in general, control of heavy mucus. We'll see. Thanks for replying.

Mucocitis is NOT the production of excess mucous, it is the inflammatory sores that you get when you are being radiated or on chemo. If you told them you have mucocitis, they are thinking something completely different that what your problem is.

I still have the excess and sometimes I choke on it until it comes out. Part of this new life we have and have to get used to it. Like everything,,, it all takes time.

Julieann: I'm a little behind in reading all the posts, but I have excessive mucus also. Here are some suggestions:

1. To increae "thin" saliva (which may help relieve the problem) see if you can find a acupuncturist that specializes in cancer. There have been several studies (Anderson, Texas) that have shown that acupuncture has helped to increase normal
salivary function.

2. My doctor told me to use "Tussin." (cough syrup just like Robatussin, but cheaper.) It breaks up the saliva for several hours.

I wish I could help more, but I'm also dealing with excessive muscus. But I also have the sores.

Good Luck
Sandy

I know, Brian. My mouth is some better now, but for over a month it was so sore I could hardly chew; there were ulcer-like things on the inside of my cheek and my lips cracked on the sides. My general practitioner prescribed fluconazole
1-tablet pill because he considered it a yeast infection. The pill didn't work, but I had some Nystatin that I used a while back, and it seems to be working. I wanted to find out if I had a fungus or bacterial infection, or either. The mucus increased and thickened also. I'm not sure if increased mucus has anything to do with oral mucositis, or if my sore mouth is mucositis, but am trying to get an appointment with the UAB oral specialist who might be able to determine this. Thanks for your reply.

My guess is that it is a fungal (Candida) or bacterial infection. Candida is notorious for creating those kinds of sores in extreme cases. I get it once in awhile when I also get the flu or something else that takes down my immune system. Diflucan tabs over the course of a week always knocks it down for me. But as you are testimony to, as strong a drug as it is it doesn't always work for everyone.

Better watch the Tussin Sandy unless your Dr oks it. I was told don't.

Jim:
Thanks for the advice, but it works fine for me. I don't take a lot, but it still seems to last for hours.
HAPPY 4TH OF JULY

Hi Julie - yep, after I posted the message re: dentist, I saw I had misread your info - mixed it up w/someone else's thanks for the tip though....