John, who has undertaken ( a non oral cancer patient or survivor, but a really good writer) the task of keeping up on building the content of the main web site, has written a page on mucositis. located at:

http://www.oralcancerfoundation.org/treatment/mucositis.html

I would appreciate it if all of you would read the article and posts your comments and additions (or deletions) to it here. You all did such a good job on adding valuable content to his last complications page, that I would really like to have your input before we move onto the next subject. Personal experience, work arounds for the discomfort, products that made it better worse or had no effect, whatever your experiences are, please put them up here so that we can make the topic as rich with valuable insights as possible. Thanks.

John will glean as much out of them as possible, and then we will go back to the live page and edit it.

Bringing this back to the top. You guys are as good a source of information as any medical web sites because you have walked the path, know the work around and can tell it like it is. Please offer you opinions and comments here.

Brian and John

I am constantly amazed at both the accuracy and brevity of the OCF web expositions. My prose tends to the florid and your product makes the extremely hard work of editing look easy.

My experience with mucositis was horrid. Even my seasoned RO and MO would wince with each oral exam during RT and Chemo, and ask solicitously if I needed more pain control. I was reluctant to go to the Fentanyl patch but glad I listened to them. So your closing remarks are excellent in their emphasis. Laxatives however never helped with the concurrent constipation, and I was headed towards impaction when my MO suggested plain cheap glycerin suppositories which true to their label worked within 15 minutes to an hour. This was an non-trivial advantage in timing far preferable to the cable company like time frame of a block of hours with oral laxatives, especially with the need to travel and wait for radiation treatments.

Recent postings from Liz in the UK bolster my positive experience with using plain cheap Seltzer water in lieu of mouthwashes. The fizz was akin to the "scrubbing bubbles" of the TV commercials for cleansers. The large one liter plastic bottles did not work, only the single metal cans in the 12 fl oz (355 ml)proved efficacious. I am somewhat evangelical about Seltzer since despite two different formulations, the Magic Mouthwash triggered nausea and vomiting and it literally "saved me"

Keep up the good work guys

Biotene has excellent products that have worked for my mom. She also found that some mucus over the counter meds helped. Finding the ones without alcohol and sugar, mostly diabetic meds worked the best, less burning and easier to get down....thanks for all you do brian....you are amazing!!!

Brian, I will need to reread it again. It was a little too technical for me. Even though Ive been thru oral cancer twice successfully, Im not at all a medical expert with some of the termonology.

Thanks you all for your comments, please keep them coming, as there are gems in here that should be permanent parts of the subject. Each post so far has something that we will use. Remember John in not one of us, and has not been through this, and he is going from information that he researches. First hand knowledge always rings true, and has a perspective that a doctor or a medical technician just does not have.

Christine b- I have set the tone of the writing in the web site, not John, and that style from the first few hundred pages that I wrote, I asked John and other helpers to copy as much as they are possible. One of the reasons for the medical terms is so that you (I hope can understand my perspective) is that often the doctors and nurses are going to use words that we do not understand. If a patient or family member have heard the word here first, and we have explained the word, it may make the understanding at the hospital go better. After-all, it doesn't help us when they tell us that we had undifferentiated capsulated blah blah blah..... because we don't have a clue. If you hear it, remember reading it, or can come here and put what you heard and this article together, it MAY make things easier. Believe me we have tried to make it approachable, conversational in tone, and not dumbed down so far that it isn't usable. If find that the most distasteful aspect of most cancer sites, they write for the lowest common denominator and there is no real MEAT im the piece. The NCI can be really bad about this.

The rest of you please add you feelings, and remember you are impacting thousands of people's experience.

Now a little reward - the person that offers the most USABLE information over the next 8 articles gets a new i-Pod from OCF. I know you all would help without this incentive, but OCF wants to show you that we care about the time you donate to us and others.

I do not see any mention of Salagen to help retain saliva function, Guinifenix (sp) which I took to help with the thick mucous, Robatussin which contains it that some other people took, or a portable suction machine with a yankeur attachment to suction the thick mucous out of the mouth. Just some thoughts.

Eileen

I think we need clarification here regarding the difference between mucositis and mucous problems.

I actually wish there was a different name for mucositis...it confuses a lot of people.

Deb

GOOD POINT. Mucositis is not the copious mucous gagging problem that we all have as well. If there is any doubt in anyones minds, mucositis refers to the actual sores that develop in your mouth, not all the crud that is constantly draining and clogging up things that is a result of the sinus irritation from the treatments. One is a pain in the ass, the other requires real pain management.

We will start another treatment complication page on excess mucous production which is NOT mucositis.

Brian:
I am a member of your site although I don't post very often. I research a lot of valuable inforation from the Foundation website, but I find that most of it is not dated. I'm note sure if I'm viewing old or new info. Is there a way to give a date or revised date to info. Also, I'm not great with the computer so maybe I'm missing something.
Thanks
Sandy