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.

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.

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

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.

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.

I dont know much about it, but its not on Quackwatch. I really hope it works!

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.

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

Wow, that would be amazing!

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.

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.

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!!!

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

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!

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.

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