The war with canker sores -SOLVED- UPDATE!

cureitall66
cureitall66 Member Posts: 913
edited January 2014 in Head and Neck Cancer #1

Hi All,

Wondered if anyone is/has battled canker sores after tx. Kreg has been out of tx for a year and has been battling canker sores ever since. He usually has 1 or 2 at a time, but this week he has 3 and they are worse. Really is hard to eat and be comfortable with them. He has tried almost every suggested rememdy out there. He has been taking B12 and Lyosene supplements also...still not much luck. He has spoke to his ENT and Oncologist and they say some people get them after treatment due to the trauma. They didn't offer anything that we haven't tried yet. Anyone have these and have something that worked?....Otherwise Life is good! Laughing

~Cris 

**UPDATE

I had this "huntch" that the reason for the canker sores was the prescription fluoride toothpaste- "Denta 5000 Plus 1.1% sodium. So in the process of elimination we decided to stop the use of the toothpaste as I researched that some people have reactions to the fluoride. He stopped it for about three weeks....AND NOT ONE CANKER SORE! Now, here's my next question....what does he do to make up for this loss of fluoride... toothpaste? He goes back for a check up at the end of this month, but don't want to wait that long to discuss with doctor to replace it. Really want to keep up on the dental care here.

Thank you again!!! Hope this helps someone now or in the future.

God Bless,

~C 

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    cris, i don't have any

    cris, i don't have any suggestions but wanted to say I pray they go away soon and he finds something to ease the pain in the meantime.  i'm sure someone here will have a good suggestion.  wishing kreg the best.  let us know if you find something that helps.

    God bless,

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    open wide

    Cris & Kreg,

    Strike two, Matt has nothing. Trauma I believe. I picked up a few quirks I did not have before treatments.  I would do just as you have done and keep searching for help or cause.  I suppose you have eliminated the obvious culprits in his diet (peanuts, bananas, whatever)?  Other than making sure his nutrition is well balanced I guess you are stuck with the trauma.

    I hope Kreg is sore free soon.

    Matt

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Abreva...

    Put it on at the first tingle, usually clears it up before they even form...

    I used to ue Campho-Phenique, but Abreva is 100x better....

    JG

  • cureitall66
    cureitall66 Member Posts: 913
    Skiffin16 said:

    Abreva...

    Put it on at the first tingle, usually clears it up before they even form...

    I used to ue Campho-Phenique, but Abreva is 100x better....

    JG

    Abreva.....

    Hey John....He tried that, but no luck. We thought maybe it was because it was for Cold sores and not canker....he's been using the medicated blistex that helps just long enough to get some food in him. He's being a trooper though....just slurs a lot while talking..LOL Wink

  • sabriene
    sabriene Member Posts: 28
    Sores

    Cris,

    Yes I had teatment in 06 and had those sores.  They do hurt.  I was surprised to get one on the lip and finally had the oral surgeon remove that one.  I tried it all but nothing seemed to help much.  The oncologist indicated like you mentioned some just seem to get those sores. If haven't tried might get a prescription for Lidocaine Viscous 2%. I felt it may helped a little but again regret to say there is no fast fix.  I recall with it I would use like one tablespoonful every three hours.  Then just kind of gargle & swish, then I would spit it out.   It is kind of like an anesthetic to product numbness in the mouth & throat area. However, it is just like any other drugs need to watch for any side effects. I am sure if the doctor feels not a good idea then will not authorize.  By the way my ENT was the one that prescribed it for me at the time.  Tell him he sure has my sympathy for those are very annoying.  Some reason they just seem to come and go but over time gradually heals. Roger

  • hwt
    hwt Member Posts: 2,328 Member
    sabriene said:

    Sores

    Cris,

    Yes I had teatment in 06 and had those sores.  They do hurt.  I was surprised to get one on the lip and finally had the oral surgeon remove that one.  I tried it all but nothing seemed to help much.  The oncologist indicated like you mentioned some just seem to get those sores. If haven't tried might get a prescription for Lidocaine Viscous 2%. I felt it may helped a little but again regret to say there is no fast fix.  I recall with it I would use like one tablespoonful every three hours.  Then just kind of gargle & swish, then I would spit it out.   It is kind of like an anesthetic to product numbness in the mouth & throat area. However, it is just like any other drugs need to watch for any side effects. I am sure if the doctor feels not a good idea then will not authorize.  By the way my ENT was the one that prescribed it for me at the time.  Tell him he sure has my sympathy for those are very annoying.  Some reason they just seem to come and go but over time gradually heals. Roger

    Cris

    I had the horrific lip sores during tx but they healed quickly when tx stopped. While I haven't had any open sores since, my lower lip has remained extemely sensative. I do the magic mouthwash and suck in my lower lip to see that it gets coated. That gives some temporary relief. Suggest using straws to bypass the lip whenever possible. Beyond that, not much to offer.

    Candi

  • phrannie51
    phrannie51 Member Posts: 4,716
    Are they regular canker sores...

    like the kind that pop up from eating nuts or oranges, or getting rubbed on a tooth?  I mean this as opposed to the actual mouth sores we got during treatment....Can they pop up anywhere on his tongue, or do they keep coming back at the same place?

    I decided to look them up to see what all the causes are....looks like they can be triggered by a lot of things.  But besides B12, it looks like he might be able to try a couple other things.

    "Some cases of complex canker sores are caused by an underlying health condition, such as an impaired immune system; nutritional problems, such as vitamin B-12, zinc, folic acid, or iron deficiency; and gastrointestinal tract disease."  I got this off of Web MD.

    What about trying zinc and folic acid and seeing if they will cut back the frequency?

    p

  • Purplemountain
    Purplemountain Member Posts: 119
    Chinese medicine

    Hi Cris,

    You can give the Watermelon frost a try.  It is good for cankersore and sore throat.  It comes in dark brown greenish powder form.  You can put the powder over the cankersores and they will burn at first but get better afterward.  If you have all over inside your mouth, you can use it as a rinse.  But remember, it will burns at first so don't be discouraged.

    Here is the link from amazon.com

    http://www.amazon.com/Sanjin-Watermelon-Frost-Breath-Freshener/dp/B0009JQ3FI/ref=sr_1_3?ie=UTF8&qid=1386636585&sr=8-3&keywords=watermelon+frost

    PM

  • PJ47
    PJ47 Member Posts: 376
    Try a dentist with a red spectrum laser

    It can be used for canker sores and mouth ulcers.  Did work well for me.  Good luck/

     

    PJ

  • cureitall66
    cureitall66 Member Posts: 913

    Are they regular canker sores...

    like the kind that pop up from eating nuts or oranges, or getting rubbed on a tooth?  I mean this as opposed to the actual mouth sores we got during treatment....Can they pop up anywhere on his tongue, or do they keep coming back at the same place?

    I decided to look them up to see what all the causes are....looks like they can be triggered by a lot of things.  But besides B12, it looks like he might be able to try a couple other things.

    "Some cases of complex canker sores are caused by an underlying health condition, such as an impaired immune system; nutritional problems, such as vitamin B-12, zinc, folic acid, or iron deficiency; and gastrointestinal tract disease."  I got this off of Web MD.

    What about trying zinc and folic acid and seeing if they will cut back the frequency?

    p

    They are regular canker sores...

    Phrannie,

    They are regular canker sores. They have been on his tongue, inside of cheek and lips. Always coming in different spots. Looks like you found the same site I had found in the past...that's where I got the B12 idea and a pharmacist recommended lyosene supplements. Hadn't tried the folic acid....may give that a shot at some point. 

    I'm not wondering if the prescription sodium fluoride (Prevident 5000 Plus) 1.1% Dental cream may be causing some hypersensitivity? I found a site that provided data from dermatologists that state there is a tendency of hypersensitivity from sodium fluoride and can lead to perioral dermatitis (which is a form of rash, scaley skin, or even ulcers---listing canker sores). Not trying to play doctor here...just trying to help figure out if it's something else. The ENT and ONC say they really don't have an answer but claim it could be caused from trauma and they see a lot of it.

    So......I just ran this hunch across to Pat (longtermsurvivor) to get his view on this. Maybe I'm hopping down the wrong trail and need to just let it run it's course. But, he sure is uncomfortable wit hit.

    Thanks for your research and help!

    ~C

  • cureitall66
    cureitall66 Member Posts: 913
    Thanks Everyone.....

    Thanks everyone for your replies. I appreciate the thoughts and ideas...going to check into it all!!! Can't hurt. Smile

  • TinysMom67
    TinysMom67 Member Posts: 2
    Canker sores

    I had them terribly.  And 4 1/2 years out sometimes still get them.  Now lately, its blood blisters.  From either an irritating food, or a sharp scratchy food or

    after a dental xray. anything that scratches the oral cavity, roof of mouth, or tongue will develop a blood bllister. This is a new symptom related to the damage

    from radiation.  Was at dentist today and his xray's (sharp plastic inserts they use)  gave me a blood blister.   I found the best products for canker sores and they can make you almost

    debilitated in pain and not able to eat.   Were  Gly-oxide ®, Amosan ®, and Cankaid   Gly-oxide became my best friend.  It has a bubbling fizzing action that

    would also unlodge food particles that would get stuck under the side of my tongue where the radiation hit me.  I had stage 1.5 tonsil cancer.  I would constantly

    get an irritation in the left side under tongue. It is much better now. But if you can find it. Get Gly-oxide.  Walgreens carried it.  Also the canker products

    that have this film you apply to the muscous membrane.  They seal the sore.  They are great.  And there is even a mouth rinse, that you use, and don't eat

    or drink for 30 mintues that seals the area with a coating.  They were life savers.   I am almost to my fifth year still NED and I believe my life will never

    be the same.  This year for the first time all my blood work was normal.  At first my WBC and RBC were a bit below normal. Finally those reached normal

    readings.  But my Neuts were still a bit high.  (showing fighting infection)  This past Novermber all blood work normal.  Radiation. I like to call it, the gift

    that keeps on giving.  At first I would panic every time I got any irritation in mouth, or sore throat, or saw an odd spot. One time I was sure this white spot at back of roof of mouth

    was cancer.  My ENT took a Q Tip and plucked a tiny piece of bread off.  lol.  So, the rule is. Wait two weeks. If it  does not clear up, then start to worry.  I would have

    such panick attacks about my cancer coming back. That now I have xananx but rarely take it, unless I have a melt down.  I never alllowed them to give me a G tube.

    I am glad I didn't.  It was a battle with all my doctors.  My weight dropped to 104 before I slowly started gaining.  After the mucous (most horrible part of the healing) abated.

    I started with soft boiled eggs, very soft.  almost runny.  Luke warm soup.  Jello.  Yogurt became my friend  Plain no flavor yogurt.  And after the mucous was gone. Ice

    cream milk shakes.  Finally it was Carnation 560 calorie supplement drinks that got my weight up to 114.  I talked to a professional and he said.  My body had a  new

    set point.  It was fighitng to stay at 104. I was 5 ' 6"  tall so at 104 I looked like a skeleton when naked.  but slowly I gained to 110. then to 114.  Now I stay at 120. 

    Never gain much as I hardly ever snack.  I eat very plain foods, fresh veggies, love yogurt, cucumbers.  I do sometimes have spicy foods but pay for it, and have

    to gargle with baking soda  to rinse.  I not only don't have much taste still. But it constantly changes. One day I can taste something, the next day it tastes either

    horrible or no taste at all.  I was getting difficient in Vit C but can't drink citrus.  I found Emergen-C  a powder supplement I take each day in water.  I think it has

    helped my bruising I was always getting.  One thing I can say.  It gets better.  Each month, year, etc it gets better.  I actually like that I can't enjoy sweets anymore

    as they are not healthy anyway.  Cancer loves sugar.


     

  • cureitall66
    cureitall66 Member Posts: 913

    Canker sores

    I had them terribly.  And 4 1/2 years out sometimes still get them.  Now lately, its blood blisters.  From either an irritating food, or a sharp scratchy food or

    after a dental xray. anything that scratches the oral cavity, roof of mouth, or tongue will develop a blood bllister. This is a new symptom related to the damage

    from radiation.  Was at dentist today and his xray's (sharp plastic inserts they use)  gave me a blood blister.   I found the best products for canker sores and they can make you almost

    debilitated in pain and not able to eat.   Were  Gly-oxide ®, Amosan ®, and Cankaid   Gly-oxide became my best friend.  It has a bubbling fizzing action that

    would also unlodge food particles that would get stuck under the side of my tongue where the radiation hit me.  I had stage 1.5 tonsil cancer.  I would constantly

    get an irritation in the left side under tongue. It is much better now. But if you can find it. Get Gly-oxide.  Walgreens carried it.  Also the canker products

    that have this film you apply to the muscous membrane.  They seal the sore.  They are great.  And there is even a mouth rinse, that you use, and don't eat

    or drink for 30 mintues that seals the area with a coating.  They were life savers.   I am almost to my fifth year still NED and I believe my life will never

    be the same.  This year for the first time all my blood work was normal.  At first my WBC and RBC were a bit below normal. Finally those reached normal

    readings.  But my Neuts were still a bit high.  (showing fighting infection)  This past Novermber all blood work normal.  Radiation. I like to call it, the gift

    that keeps on giving.  At first I would panic every time I got any irritation in mouth, or sore throat, or saw an odd spot. One time I was sure this white spot at back of roof of mouth

    was cancer.  My ENT took a Q Tip and plucked a tiny piece of bread off.  lol.  So, the rule is. Wait two weeks. If it  does not clear up, then start to worry.  I would have

    such panick attacks about my cancer coming back. That now I have xananx but rarely take it, unless I have a melt down.  I never alllowed them to give me a G tube.

    I am glad I didn't.  It was a battle with all my doctors.  My weight dropped to 104 before I slowly started gaining.  After the mucous (most horrible part of the healing) abated.

    I started with soft boiled eggs, very soft.  almost runny.  Luke warm soup.  Jello.  Yogurt became my friend  Plain no flavor yogurt.  And after the mucous was gone. Ice

    cream milk shakes.  Finally it was Carnation 560 calorie supplement drinks that got my weight up to 114.  I talked to a professional and he said.  My body had a  new

    set point.  It was fighitng to stay at 104. I was 5 ' 6"  tall so at 104 I looked like a skeleton when naked.  but slowly I gained to 110. then to 114.  Now I stay at 120. 

    Never gain much as I hardly ever snack.  I eat very plain foods, fresh veggies, love yogurt, cucumbers.  I do sometimes have spicy foods but pay for it, and have

    to gargle with baking soda  to rinse.  I not only don't have much taste still. But it constantly changes. One day I can taste something, the next day it tastes either

    horrible or no taste at all.  I was getting difficient in Vit C but can't drink citrus.  I found Emergen-C  a powder supplement I take each day in water.  I think it has

    helped my bruising I was always getting.  One thing I can say.  It gets better.  Each month, year, etc it gets better.  I actually like that I can't enjoy sweets anymore

    as they are not healthy anyway.  Cancer loves sugar.


     

    Thank you for sharing...

    tinysmom,

    Thank you for time and sharing about this. Could you tell me what the name of the rinse is that you wait 30 min and coats the sores?

    I'm off to Walgreens!

    ~C

  • PJ47
    PJ47 Member Posts: 376

    Thank you for sharing...

    tinysmom,

    Thank you for time and sharing about this. Could you tell me what the name of the rinse is that you wait 30 min and coats the sores?

    I'm off to Walgreens!

    ~C

    Don't forget the laser it works wonders and heals the sores

    Very quickly.  I cannot tell you how fast my mouth sores healed and I could eat solid foods again.  It is a new treatment that will be valuable for head and neck cancer patients in the years to come.

     

    PJ

  • cureitall66
    cureitall66 Member Posts: 913
    PJ47 said:

    Don't forget the laser it works wonders and heals the sores

    Very quickly.  I cannot tell you how fast my mouth sores healed and I could eat solid foods again.  It is a new treatment that will be valuable for head and neck cancer patients in the years to come.

     

    PJ

    Dentist....

    PJ,

    Will check with our dentist and others in our area and see if they've got the laser. Sounds like it would be beneficial if we can find one! Thanks for sharing.

    ~C 

  • cureitall66
    cureitall66 Member Posts: 913
    Suggestions needed......See Update on my initial post.

    Need suggestions for replacing the tootpaste.....see my update under my initial post.

  • KTeacher
    KTeacher Member Posts: 1,103

    Suggestions needed......See Update on my initial post.

    Need suggestions for replacing the tootpaste.....see my update under my initial post.

    Maybe

    Maybe after dental tooth cleaning the dentist can paint the 'stuff' on that they put on kids.

  • phrannie51
    phrannie51 Member Posts: 4,716
    What about just calling

    his dentist....tell them what you've discovered, and ask if they'll prescribe a different brand?  It can't hurt anything.

    p

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Frequency...

    If you are using the toothpaste several times a day....

    There are actual flouride gels, like Oral B-STOP that you use only once a day, or every few days... That might be enough to get you through also...

    This is another one of those topics that go all over the place...

    I used the gel 3 - 5 times a week for the first year pr so, gradually tapering off to now at five years I might use it once every other week or so.

    As of right now, I haven't had any more probelms than I had before rads...

    That might be a cavity once a year, and fixing 1 - 2 spots from fillings or crowns years ago, or nothing new...

    Some people have highly structured routines and schedules....

    JG