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mouth sores help

wolverine
Posts: 2
Joined: Jul 2008

My husband is 5 months out from teatment for stage 3 SCC of base of tongue, T2 N1. He had 2 Cisplatin treatments, 5 Erbitux, and 42 radiation treatments. Peg tube used from second week. Very, very ill all of treatment. Staph infection in 6th week, gastric issues for 4 months. Back to back thrush infections in mouth for 3 months. Of course, dry mouth, no saliva, not eating anything yet as mouth sores and infections make it just too painful. No appetite to speak of, either.He also has rheumatoid arthritis and is on high doses of Methotrexate. Weight loss continues as he struggles to get in nutrition in through tube, as well as water, and to work as many hours as possible. Most difficult problem currently is the mouth ulcerations on roof of mouth, sides of tongue, under tongue. We have tried a long list of medications, rinses, natural remedies: Allupurinol, Mary's Magic Potion, acidophillus, baking soda, aloe vera juice and gel. The nightly flouride gel treatments, even using the dental trays, are so painful. Anyone have any other treatments he can try? I never imagined when treatment ended in June, that he might not be able to enjoy a few bites of Thanksgiving dinner! Any and all suggestions welcomed!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Geez, wolverine, your husband has been through the mill! I had one of those nasty staph infections, and they are probably worse than the cancer treatment!

He is fortunate to have someone there who cares for him, and I salute you for that!

As to the issues you present, since you say you have tried everything, there is little to provide that might be helpful regarding the mouth sores. I will say that if he is relying solely on the fluoride trays for oral hygiene, I would suggest adding dry-mouth mouthwash and toothpaste. These do a lot to keep the oral area hydrated and to stave off infection.

You are probably already doing that, but that is a suggestion, along with one more idea: HYDRATION. I believe it is pivotal to keep the oral cavity hydrated, as well as the entire body, of course. By this, I mean that hub needs to be consuming water orally, rather than just through the tube, and lots of it!

Beyond that, I can only assure you that the sores will go away. They do. Keep applying the medications to them, and they will go away. Patience here is a virtue, so stick with it!

And, beyond that, re nutrition, I am assuming that hub is gettting some sort of liquid protein in a can? Jevity or some such? You can do MUCH about this part of the equation.

First, you can ask that they increase the caloric intake provided by each can. Second, you can insist that he take in more cans with each feeding (sorry, I know it sounds like a cattle project, or something, but I am one of the survivors so cut me a break :)). Third, you can ask that they add something like Pro-Source,a protein additive, to his mix. Fourth, with doc's advice, of course, try adding something like a daily dose of Centrum of some other iron and vitamin supplement.

I am not one to talk, by the way, as it has taken me a long time to get back to a reasonable looking weight (still not where I should be, but not looking like I'm dying anymore either).

As my Onco Man so aptly put it, eating isn't fun any more. It is all business. Hub needs to realize that and get down to business.

I would advise seeing a nutritionist, if you have not done so, because such a person can advise on substances that will help with weight gain, healthy weight gain, and how to go about it.

It is not all gloom and doom. He WILL eat again, but it takes awhile, and he may never eat the way he did before, depending on what has been done to treat his cancer.

The sores WILL go away. Be patient, both of you, and keep applying things until you begin to see some improvement.

Best wishes to both of you and to your family.

Take care,

Joe

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

Talk to doctor about a liquid mouth rinse called Magic Mix or Magic Mouthwash. It helps numb the mouth to make it easier to take in nutrition via the mouth. Based upon other meds he might not be eligible, but it helped me greatly.

When he does get to do food, go low sodium as that will burn the sores.

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Hello Wolverine,

My family has been dealing with cancer since my mom was diagnoised 35 years ago. Since then both my sister and I have had to battle cancer as well. My mom was told by her onco all those years ago to use a rinse of warm water and Alum. It can be found in the spice section of your grocery store, it is used for pickling. We have all used it with success, as a matter of fact we all keep it in our medicine chest for breakouts. I hope this helps and I wish you and your well!

RE

josie_5
Posts: 6
Joined: Aug 2007

i used vortrex, predizone, mouth magic wash rines. the votrex and pedisone seemed to help with the sores. i took restoril diluted in water to help rest. my prayers are with u. ask dr. for more help. best of luck. josie

josie_5
Posts: 6
Joined: Aug 2007

a liquid called "swish and swallow" helped - so did a liquid drug called "difulcan" - this mouth stuff really hurts. got to go to chemo (ugh). best of luck to u - josie

Weezer
Posts: 2
Joined: Jan 2009

I just finished radiation at the end of the year and had mouth/throat ulcers and thrush, too. My rad onc prescribed magic mouthwash to numb and coat mouth and throat and brushed teeth w/biotene, flossed, and gargled with warm water and baking soda and salt after eating anything. I kept complaining of mucous and gunk on my tongue and roof of mouth and found that using a tongue cleaner helped to minimize the thrush, mucous, and is helping the blisters to heal. I'm not sure if he can tolerate the tongue scraper, but it has helped me tremendously!

Also, eating prior to radiation was once my favorite pasttime, but became impossible for awhile. The texture and smell of food made me sick, eating became the most dreaded chore! Even drinking water was like slurping mucous and seemed to come right back up!! Any type of meat was revolting (this coming from a self proclaimed carnivore), I was able to tolerate a slice of fresh tomato, sweet cut white corn, baked sweet potato, cucumber, and peanut butter. Everyday, I experiment to see what I now like or no longer tolerate. Needless to say, I've lost a lot of weight, but am finally able to hold food down now.

It sounds like you are beyond this now, but my doctor had to try different combinations of meds, but we found that taking the compazine/zophram/patch (for nausea), Acifex (for stomach acid), Vicodin (for pain in jaw, but not with compazine) and magic mouthwash (mouth sores) before attempting to eat/drink. Drinking cold water w/straw or sipping very warm water/apple juice seemed to help.

I wish you the best of luck ... and keep trying new and different things.

Remember ... this too shall pass.

ronefx
Posts: 11
Joined: Jan 2009

I had a grade 3 astrocytoma tumor on my right frontal lobe 15+ years ago and went thru 6 weeks of radiation treatment and a years worth of chem. I had dry mouth for years after, always felt thristy and always had ulcers. I have been using this for a couple of years now, and what a difference it makes, I only wish I would have known about it sooner. Its a little on the expensive end, but you can catch it on sale at walgreens for 4.99, but it has been a blessing as far as the difference it makes.

http://www.laclede.com/

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

you didnt say what it was you used you just said where to get it

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

heschie...the 'what' was in the title: the poster was advising using biotene toothpaste; biotene also makes a mouthwash. It is great for dry mouth as well.

Hope this helps.

Take care,

Joe

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