| Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 51 | After completing his first week of treatment, my husband Paul started to get mouth sores today. Does anyone have suggests what to do for this. It's listed as one of the side effects but it doesn't say what to do about it.
Diane-wife to Paul, age 55 DX 9/17/12 HPV/SCC/BOT Stage 4a Non-smoker/casual drinker Otherwise healthy 9/24/12 Cisplatin, Taxotere,5-FU - 3x 12/3/12 Rad x 35/Carboplatin x 3 1/15/13 DVT upper thigh Passed away 1/23/13
| | | | Joined: Apr 2012 Posts: 47 "OCF across the pond" Contributing Member (25+ posts) | "OCF across the pond" Contributing Member (25+ posts) Joined: Apr 2012 Posts: 47 | This is the start of a variety of fairly unpleasant symptoms which seem to affect some people worse than others, get ready for levels of mouth pain and sore that are tough to ignore. Certain mouth washes can ease the discomfort usually after stinging like buggery on 1st application. stay away from a lot of over the counter ones that say mild they burn the mouth. I had to dilute one called difflam but it was a life safer, then I eased back as I was doing it too much. Luke warm water to rinse acid out of mouth often in the day helps. Building up a little routine and sticking to it. Salt and bicarbonated soda much milder than the teaspoon to half a pint often quoted helps. Read past posts on this site, and be strong for your hubby it is a rough road but the light at the end is that its keeping you good for the long term.
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | He can rinse with peroxide and water mixed and also salt and water mixed. There is also something called Magic Mouthwash that works great for numbing things. He needs to begin some pain meds if he hasn't already. Lortab is a liquid that worked VERY well for Kevin, just before eating/drinking. For long term pain he had a fentynal patch. Don't wait until the pain is too much before he starts something. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | 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 | Mouth sores can be very painful. Its best to rinse several times per day (at least 4 times daily) with a mixture of 16 oz of warm water with 2 tsp baking soda and 2 tsp salt. If the salt burns too much cut it back or omit it. This concoction works to help neutralize the ph in your mouth while salt water is healing. It will help but unfortunately the mouth sores go right along with treatments.
Some members have had great success with Manuka honey. Not sure if this has been proven with any scientific studies yet but some patients here have been very happy with the results. 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: Aug 2012 Posts: 5 Member | Member Joined: Aug 2012 Posts: 5 | MuGard can help prevent mouth sores. Here is the link to the website for this product. http://www.mugard.com/We were able to receive help with receiving MuGard by talking to a very pleasant representative named Bonnie, please send me a PM if you would like the number. MuGard is most effective if started early ... ideally with the very first radiation treatment. Try to get started on it right away. Three weeks ago my son completed 35-rads/6-cisplatin for SSC of left aryepiglottic fold and used MuGard from beginning of treatments. He did not get any mouth sores. His regimen was to eat then brush & floss then swish with baking soda/salt solution then coat the mouth with MuGard by moving it around all oral surfaces for at least a couple of minutes with each use. Wait at least one hour before eating or drinking again after using MuGard. This should be repeated every 3 to 4 hours while awake. Many doctors do not know about this product since it is quite new. Please help spread the word by seeking your doctor's approval to add this to your treatment. A prescription is required and can be facilitated via forms on the product website submitted through your doctor's office.
Last edited by ChristineB; 10-02-2012 04:50 AM. Reason: removed phone number
| | | | 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 | I dont know much about it, but its not on Quackwatch. I really hope it works!
Last edited by ChristineB; 10-02-2012 04:54 AM.
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: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | By week 2, my husband had bad mouth sores, so we knew he needed to figure out the mouth washes, quickly. He found the decision of which of the many recommended mouthwash regimes to use one of the more perplexing decisions. What helped him make the decision was to break it down by purpose. Here's what he used, and in this order;
1. 1:3 hydrogen peroxide & water solution, to try to heal existing sores 2. Magic/Pink wash, for symptom relief 3. Mugard, preventative (he swalled some of this to coat throat too) 4. Caphasol Artifical Salivia, also preventative, to keep the mouth moist
Within one week of using this combination, he was down to one mouth sore, which he was able to "eat around" using viscious lidocaine dabbed on that one spot. He continued to use this throughout treatment, and the mouthsores never returned.
On a side note, Mugard is extremely expensive, $1300/mo if memory serves. If your insurance will not cover it, they will send it to you for free. U of Chicago started recommending it last spring after Rush & Northwestern reported great results with it. It tastes nasty, and it's "one more thing to do", but considering the results, it was worth it for my husband.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | MuGard does sound very promising. There is a Phase IV clinical trial being done to see if MuGard is as good as it's website claims: Mugard clinical trial The clinical trial is well designed with a sham rinse to account for the placebo effect. The company claimed at a podium presentation on June 28th at the Multinational Association of Supportive Care in Cancer (MASCC) and the International Society of Oral Oncology (ISOO) on Supportive Care in Cancer conference in NYC that its interim analysis of preliminary data based on 70 oral cancer patients showed good results in pain, delay in onset of mucositis & weight maintenance. It would be wonderful if the final trial results show the same results. Charm 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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Wow, that would be amazing!
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 51 | Thank you everyone for all the great advise. He's already lost 10 pounds in one week and its only been one week since his 1st chemo. This seems too early in the process to lose that much weight. I'm afraid if he can't swallow without pain he's going to lose way too much.
Diane-wife to Paul, age 55 DX 9/17/12 HPV/SCC/BOT Stage 4a Non-smoker/casual drinker Otherwise healthy 9/24/12 Cisplatin, Taxotere,5-FU - 3x 12/3/12 Rad x 35/Carboplatin x 3 1/15/13 DVT upper thigh Passed away 1/23/13
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | The viscous lidocaine is the only thing that worked for me, Diane. But I must admit that MuGard sounds promising. Sorry he's having such troubles!
My thoughts are with you both.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | 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 | Diane, watch that weight loss!!! This is very early for that kind of drop. My nurses told me the goal is to have zero weight loss but for most patients its impossible. By losing weight so quickly a person loses muscle which makes them feel run down. This very quickly turns into a viscous cycle where he will struggle and possibly end up hospitalized for malnutrition/dehydration. It happened to me so please change this now so he doesnt go thru that experience. Push the nutrition! Every single day a minimum of 3000 calories and 48 oz of water. Boost now makes the Very High Calorie (VHC) drink which can be found on thru Amazon. By going thru OCF for this you will be helping us to help you. It give OCF a 6% kick back, this goes for anything you purchase there. Here is a link to the thread for VHC that Brian set up to have our info already there so OCF gets the kick back. By drinking VHC he would only need to get 6 of them in per day to hit his calories. Bost VHC (with the OCF Amazon link built in) PS.... There is always the nasal tube or a regular feeding tube which could be added if necessary. No matter what he must swallow every single day even if it hurts. If he is in alot of pain, talk with the doc about pain meds like the fentanyl patch. Good luck!!!
Last edited by ChristineB; 10-02-2012 12:55 PM.
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Kevin dropped very quickly too. By the time 6 weeks of chemo were done (the 2 cycles) he was down about 23 pounds I think. Then he lost 33 more with radiation. Give Paul the pep talk. He is in control of his destiny here and he HAS to take whatever is needed to combat the pain so he can eat. Like I said before; the Lortab worked great as a pain med just before food. Kevin would take it, swish with the magic mouthwash and chug a couple of cans of Ensure. Really think about the feeding tubes Diane. It sounds like he is going to need it. Praying for strength and confidence for Paul. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | Vince found pain management critical to his ability to eat. He was able to make it through on long and short acting oxycontin. If his pain ever got above a 2/3 or he was regularly taking the short acting oxy, the med onc upped his long acting oxy. Anytime he really had a hard time eating, it was usually pain related. I would strongly advise Paul to not be shy about asking for pain relief. Use whatever it takes to get through this in one piece!
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 51 | Turns out his mouth felt like it was just one big huge sore. He compared it to biting into a roasted marshmallow and having all the hot goo burn your entire mouth. Food has tasted awful for the last few days but he is still eating anyway. Today was the first day he's been able to taste the real taste of food. I'm hoping he can enjoy the taste this coming week. His second chemo treatment is a week from Monday.
Diane-wife to Paul, age 55 DX 9/17/12 HPV/SCC/BOT Stage 4a Non-smoker/casual drinker Otherwise healthy 9/24/12 Cisplatin, Taxotere,5-FU - 3x 12/3/12 Rad x 35/Carboplatin x 3 1/15/13 DVT upper thigh Passed away 1/23/13
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | That's a pretty good description! This week should be pretty good. A rest time to get ready again! The battle continues. Thinking of you guys!! Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | |
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