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.htmlI 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
Bottom right hand pages have a edit date on them. All pages are minimum reviewed on a 6 month time period, pages that have constantly updating information, facts page, hpv page, etc. have this date as it is something that we recently started doing for our advisory doctor board more than the public. Pages in which information is less dynamic we have not done this to. You will not find an more up to date site on this disease on the web. Please note that the NCI oral cancer page has not been updated in two years, the CDC site has not been updated in three. The expenditures for these trusted government sites are at the bottom of their priority lists of things to spend money on, especial with the budget cuts they are all operating under. If there is a doubt in your mind that the information is current, please contact me directly and I have a master list of updates and schedule for review. THe science advisory board in the about us section of the OCF site will tell who is updating and / or reviewing our pages.
If you are not conversant in how computers cache pages so they view quickly and let you sometimes see a page with is out of date, but has been updated please ask.
Remember to dump the cache on your web browser on a regular basis to be sure you are seeing the most current version of the page, and not one from a previous visit to it that it has cached.
Note bottom right hind corner of this page
http://www.oralcancerfoundation.org/dental/dental-complications.htm
Brian, you are very good writing medical articles. The article was well written and informative. Im sure many more people understood it more than didnt. Personally, I am not the best at reading anything too complex, not just medical things. If it was written any other way then you are correct, there wouldnt be such valuable info included inside the article.
Thanks for everything you do.
Seems I am walking behind you Christine. LOL Not a bad type view either..{~~} yahoooooo LOL
Brian and John
Just to clarify: my comments were about mucositis not mucous. I never developed a viable coping strategy for the gagging mucous unless you count vomiting. That did work but I don't recommend it. Actually, one of the unexpected benefits of the traechestomy this time around is that huge gobs of mucous get expelled out of the stoma. Otherwise, it's still upchuck for relief.
Brian and John
I know this comment should await:
[quote]We will start another treatment complication page on excess mucous production which is NOT mucositis.[/quote]
but having just been woken up again by mucous, I should add that vomiting was reserved for those really thick semi solid mucous "plugs" that hang in the back of your throat and got more prevalent as the radiation GY total grew. They were the ones that made me vomit up my Ensure and cry over the lost calories or had me retching in the hospital. For the old run of the mill [quote]all the crud that is constantly draining and clogging up things that is a result of the sinus irritation from the treatments[/quote] my beloved SELTZER did indeed work as swish and spit. I never had a suction machine until this surgery - both the hospital built in and home portable - and it only works on the latter no former mucous, When you start up that page, I'd suggest noting there are these two types (or maybe it was just me lucky enough to have thick and thinner)
Kudos to DebandBill for pointing it out here where technical accuracy is important. I have often seen this confusion in threads here but since I knew from the context whether they meant mucositis or mucous, I did not "correct" the posters.
I only put this in so those to whom I recommended SELTZER for both, do not get confused. Another reason why I love what our over the pond friends call "soda" but I don't use that for fear of people using Coca Cola.
I am still looking for Seltzer Water. Where is the best store to find it?
Jim
I would think that a liquor store would carry it as it is used as a mixer. Or possibly Walgreens?? Just no buying the stuff that they mix with it ok?
Patty
Got ya Patty. I haven't drank anything for years and forgot about Liquor stores, I will do as instructed and not buy anything premixed. There are no Walgreens open in this area yet but one is due to pop it's doors soon.
I have not tried it because I still have trouble with anything carbonated. I have a Pepsi sometimes, but I have to open it two days before I want to drink it and that just takes a lot of pre-planning. LOL
Selzter water is different from club soda too so don't be tricked by some well meaning sales person. You do sound like you are feeling a little better. Must be the DQ.
Patty
Safeway has selzer water in cans and bottles.
EZJim
Pete D named my supplier I buy all my Seltzer water from Safeway - get the 12 fl oz cans though and NOT the one liter bottles. The best and most inexpensive (and how often do those two adjectives apply to the same item) is the Safeway in house store private brand which has Safeway on the lower right and SELTZER WATER in caps on the front of a blue colored part of the can for a label with a Lion rampant insignia. In my area, they have been running a six month sale of 4 six packs of the cans for $5 Don't get any of the flavored ones Safeway sells unless you crave sweet fruit flavors or lemon lime but I can't vouch for them.
Do NOT go to a liquor store nor buy any pre-packaged so called seltzer equivalents - as Patty warned, liquor store mixes are not really pure seltzer even if they are labeled as such or the salesman insists it is. Liquor stores only sell "soda selzter" or else "club soda" or "tonic water". They each have unnecessary added ingredients such as quinine, solidifiers, emusifiers, etc which will mess you up.
Thanks Charm I could not come up with the words to warn him why not to buy it and was just hoping he'd listen any way,
Jim - do you have Kroger over there? They are similar to Safeway.
I'll make a note and after church I'll see if I can dig up who owns what grocery chain for you - it should be on this web. Then you would know who was likely to carry it.
Patty
My husband suffered from severe mucositis. At one point he could not tolerate rinsing with water/baking soda/salt solution or any solution.
A nurse suggested warming up the solution and that did the trick. Several seconds in the microwave took the chill off. I don't think I've seen this discussed on the forum.
Brian: Thank you for the date info. Sandy
I have a few comments:
Introduction 2nd paragraph, first line, I would say "one of the" as opposed to "probably the most" debilitating complications. Last line You mention reduction in chemo but I had or at least I thought I had more problems with Mucositis as a result of rad than chemo.
Signs of Mucositis - no mention of lips or trismus?
Consequences of Mucositis - 4th, 5th and 6th paragraph, no mention of hydration issue?
Duration - why was just chemo mentioned and not radiation?
Preventive Steps - Why no mention of Fluoride Trays? I started mine 30 days pre Tx.
Just just quick observations.