mouth sores help

wolverine
wolverine Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
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!

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    nutrition and sores
    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
    SASH Member Posts: 421 Member
    #3
    Talk to doctor about a
    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
    RE Member Posts: 4,591 Member
    #4
    MOUTH SORES
    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
    josie_5 Member Posts: 6
    #5
    mouth sores
    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
    josie_5 Member Posts: 6
    #6
    mouth sores
    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
    Weezer Member Posts: 2
    #7
    josie_5 said:

    mouth sores
    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

    mouth sores
    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
    ronefx Member Posts: 11
    #8
    Weezer said:

    mouth sores
    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.

    Biotene Toothpaste
    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
    heschie Member Posts: 37
    #9
    ronefx said:

    Biotene Toothpaste
    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/

    mouth scores
    you didnt say what it was you used you just said where to get it
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #10
    heschie said:

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

    what to use
    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
  • nurse8
    nurse8 Member Posts: 2
    #11
    MOUTH SORES FROM CHEMO

     MY brother & patients use LYSINE tablets- over the counter- 1 or 2 tablets a day before chemo & during.  LYSINE HEALS THE SORES UP IN A FEW DAYS>>>IT WORKS!      ( NO HE DOESN"T HAVE "COLD SORES OR HERPES VIRUS< BUT MOUTH SORES AS A RESULT OF CHEMO.  TRY LYSINE.   ALSO, WE"V DISCOVERED BY DRINKING  RAW CARROT JUICE-1/4 CUP a day gives him energy & stops diarrhea from chemo.

  • nurse8
    nurse8 Member Posts: 2
    #12
    mouth sores from chemo

    I wanted to tell everyone that my brother used LYSINE tablets- over the counter to heal his mouth sores from chemo.   NO HE DOES NOT have "cold sores"  or the Herpes virus,  the  mouth sores from CHEMO.   LYSINE 1 or 2 tablets a day before and during chemo heals the sores!!!!   I'm a RN & my pts use it, too.  IT WORKS!!!!!! Thank God!    Lysine -over the counter.

  • JBBW
    JBBW Member Posts: 30
    #13
    My best friend is Ambesol

    Ambesol.  It helps with all kinds of mouth sores.  Just use a swab or your finger to dab some on.  My mouth tissue is sensative but I can still tolerate the pain of the ambesol for a second or two before it goes numb for an hour.  Has it helped heal them?  no.  I don't think so.  I really wish everyone who has this kind of pain finds something that works for them as well as this works for me.

  • Lady54
    Lady54 Member Posts: 7 Member
    #14
    Mouth Sores Relief

    I, too, had issues with extreme mouth sores.  Orajel (the one for ‘all mouth sores,’ not the one for canker sores) was an absolute Godsend.  I also rinsed with the baking soda + salt water solution every hour and used the hospital-made mucositis magic mouthwash four times a day, as prescribed.  It took many months post-treatment for the sores to heal.  Xylimelts (mint-free) were also helpful (and continue to be) for dry-mouth.  And finally, I completely agree with the other members that hydration is critical to the healing process.  And good news — the fluoride treatments have now stopped hurting! Things will improve!

  • Elderwoman
    Elderwoman Member Posts: 2
    #15
    Tongue biopsy

    I had stage IV squamous cell diagnosed in 1999.  Fast forward 18 years later, I have a tongue ulcer.  I'm scheduled with an ENT to do the biopsy in his office.  

    This is my first post on this site.  Anyone with that experience?

    Biopsying radiated tissue is my big fear today.  

  • Elderwoman
    Elderwoman Member Posts: 2
    edited November 2017 #16
    I lived on magic mouthwash. 

    I lived on magic mouthwash.  It's a prescription. After 18 years back on it.

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