#91960 03-17-2009 07:12 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | 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.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | 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, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
| | | | Joined: Mar 2009 Posts: 23 Member | Member Joined: Mar 2009 Posts: 23 | 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!!! | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | 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.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | 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
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | 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
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | 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, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | 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
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | 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, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 |
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. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Seems I am walking behind you Christine. LOL Not a bad type view either..{~~} yahoooooo LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I am still looking for Seltzer Water. Where is the best store to find it?
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | 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
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | 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.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | 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
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Safeway has selzer water in cans and bottles.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | 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
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | 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.
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Brian: Thank you for the date info. Sandy
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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