Mouth Sores

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rdeesides
rdeesides Member Posts: 459

I couldn't find a thread solely related to this side effect so figured I would start one.

I am doing AC and gothorrible mouth sores, probably around 6 of them, on Day 7 of tx #1. I got a fever the day after. I was rinsing with baking soda/water mixture several times per day and I also ate ice during treatment, but I should have probably been more careful in the foods I was eating (salsa).

I am now following this routine: Biotene mouth wash, brush with Biotene toothpaste, floss, Dab sores with milk magnesia. Doing this after every meal.

Sores seem a little better on now day 10, but not healed. I just tried to eat a teensy bite of butter cookie that someone sent me from Hawaii in a care pkg and it hurt so so badly.

I am so frustrated. I love to eat. This is a sick joke that THIS is the side effect I get. My family has been eating all kinds of delicious things this weekend and I am drinking Ensure! I just hate it.

I'm scared to death these won't heal before treatment #2 and then what will happen? Also, I ate the damned ice during treatment. Did I not eat enough of it? Maybe your mouth has to literally be stuffed with ice? Has anyone tried laser treatment on their sores? Any other preventative ideas?

I love you guys! Don't know how I would figure any of this out without you.



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Comments

  • Leatherette
    Leatherette Member Posts: 448
    edited August 2017

    Sounds like you are doing everything right, however, I was told not to floss. I got a waterpik. I found that my sores started to really heal when I was on steroids for my second round, and since then, I'm being super careful to do the salt water rinse as much as possible.

    Despite that, I have a tastebud right on the tip of my tongue that is inflamed (not sure what it's called when one tastebud swells up and hurts) and the roof of my mouth has something that threatens to be a problem, but hasn't.

    I also got a toothbrush with a tiny head because my toothbrush would brush against the sores, hurting and probably interfering with healing. I'm cleaning my teeth more thoroughly as a result.

    They are the absolute pits, and to me, the worst side effect. I am sorry you have so many. It hurt to talk, not just eat. Ibuprofen helped with that. Magic mouthwash only helped in that I could get my whole mouth numb so I could fall asleep.

    Hope something here helps!

    L.


  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    I got one since Thursday on my AC #3 infusion and it didn't heal yet. I always use baking soda / salt rinse after meals I could only stay away for two infusions. My diet has been good most greasy food I had was grilled Ham and cheese sandwich. i got the magic mouth wash so I used it on put on top of the sore. For four days still not heal yet. 😥😥

    Leatherette - I got that on the edge of my tongue also, it seems to me the baking soda / salt rinse took care of it. I got that almost every other day. They are small and red

  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2017

    rdeesides - I didn't eat ice, but rather held it in my mouth and when it melted I got another mouthful. I brought a large Tervis tumbler of crushed ice from home. I got probably a dozen mouth sores after infusion #1, and my MO gave me a sample of the drug Caphosol. It comes in ampules that you mix together, then swish and spit. All mouth sores gone within 48 hours. Mugard is another drug that works well for mouth sores, and Nystatin if there is yeast involved. Ask your oncologist if they have any samples of these drugs in their center - they commonly do, and I say this because they are expensive. That way you don't have to wait for them either - they hand you the sample and you can use it immediately. My onc gave me a whole sleeve of packets, so I was set. I did not have any mouth sores on subsequent infusions, so it is also possible that because the loading dose is larger in the first infusion, the ice was able to overcome at that point. Definitely stay away from acidic and spicy food - tomatoes, pasta sauce, citrus, mint, spicy peppers, etc.

  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Leatherette, good tip about small toothbrush. I wasn't able to brush the first day it was so bad. Maybe a small brush would have helped. I haven't gotten a waterpik yet because all these extranneous costs are killing me (Claritin, Biotene mouthwash, Biotene toothpaste, Immodium, new toothbrushes, headcoverings, etc). I will probably buy one soon because my daughter is getting braces so we will need one for that.

    Paulette, I think it takes around 7 days for these sores to heal. It's the pits!

    SpecialK, Thank You! Will definitely ask about these meds, esp samples! I really really hope I don't have this on subsequent infusions because it is the absolute worst part of chemo so far! I really dont know how I will avoid spicy/acidic the whole time I'm on chemo! This is so hard.

    Rebeka

  • Freya244117
    Freya244117 Member Posts: 603
    edited August 2017

    I used Kanalog paste for mouth ulcers. It is available over the counter here, and worked a treat.

    Kenalog in Orabase is an oral sticky paste that contains the medicine triamcinolone acetonide, which belongs to a class of drugs known as corticosteroids. ... Kenalog in Orabase is used for relieving tenderness, pain, inflammation and ulceration of the inside of the mouth or the gums.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited August 2017

    I had the worst problems with my mouth after the first round as well. I'm not sure if it was the higher dosing or the plummeting WBC count. I was given a prescription for Magic Mouthwash. It did help and I used it in subsequent rounds for general mouth discomfort at times.

    Two things that seemed to help - holding ice in my mouth during the chemo infusions and using "toothettes" instead of a toothbrush during the worst times.


  • Leatherette
    Leatherette Member Posts: 448
    edited August 2017

    Ugh, maybe don't follow my tips....the taste bud is worse, and the thing on the roof of my mouth really hurts! It has, however, started 5 days later than on the last round. I guess I am back on the smoothie diet.

  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Is the first round of chemo a higher dose normally

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    I asked my MO they use same dose unless you lost a lot of weight so they adjust it. Or your onc adjusts it.
  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2017

    For dose dense regimens, I believe the dose is static, based on your BSA (Body Surface Area) - which is why you were likely weighed and your height measured prior to starting chemo. For other regimens, like the TCH that I had, there is a loading dose which is larger than the subsequent doses. Many people on non-dose dense have issues with the first infusion.

  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    I had mouth sores so bad that they prescribed a lidocaine to rinse with. I would rinse with that every hour. I also got the magic mouth wash. It is horrible i agree. So sorry you are getting them, I ate ice and or sucked on a popcycle that they have their at my clinic. It helped and they finally healed by the 3rd treatment. Something else that I think helped a lot was that I always had something to drink afterwards. I would constantly keep something by me and take a sip every couple minutes regardless of it I felt thirsty! It was like it keep the fluids moving and sitting in your mouth if that makes sense.

    Hope they heal fast for you. They suck! I could not even talk they hurt so bad. Of course my husband loved it.

  • Lula73
    Lula73 Member Posts: 1,824
    edited August 2017

    you can also try mixing Benadryl in with milk of magnesia to swish with or just dab it on with a q-tip on the sores directly. 50-50 mix liquid Benadryl and milk of magnesia. Apply 2-4 times a day. The Benadryl can help reduce the inflammation process.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited August 2017

    I used the magic mouth wash, it helped a little.

    I couldn't stand my minty toothpaste, so got some kids flavored paste. Grape, berry? That really made a difference for me.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    I do what Lula suggested, also I drink water while I'm doing my infusion I think all of us do.


  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    I wasn't drinking water during infusion so will try that too. I have a lidocaine rinse left over from some dental issues my daughter had. It is so gross, but I did use it when they were at their worst, just to get some relief.

    So changes I may make;

    1. Stuff my mouth with ice. I did eat ice but the sores are in the very back of my mouth both top and bottom next to the back molars. Maybe I just got the front of my mouth cold but need to stuff ice into my cheeks.

    2. Im going to either swish with milk of magnesia or use a qtip to wipe all inside of mouth a few times a day, every day.

    3. Continue swishing with biotene several times a day, followed by a thorough cleaning.

    4. No spicy foods. :-(. It's going to be a loooonnnggg 6 months.

    5. Ask dr for some meds as per SpecialK suggestions

    6. Get a WaterPik

    I really really hope Taxol will be easier

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    rdeeside- sounds like a good plan, I hope taxol would be easier for both of us.

  • Leatherette
    Leatherette Member Posts: 448
    edited August 2017

    I just ate a banana and it hurt. A banana!


  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Leatherette - I'm so sorry that sucks!


  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    day 6 on my mouth sore still there and wide open sore 😢😢 sucks it actually got bigger the last couple days

  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Paulette, are you putting milk of magnesia on it? I think that helped mine. Ugh, these things are no fun. I'm wondering what it's going to be like to do a treatment with them already in my mouth.

    R

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    I used the magic mouth wash on my sore. It should be getting better, it doesn't hurt much today thankyou

  • Hahlyn
    Hahlyn Member Posts: 179
    edited August 2017

    Hello

    What helped me with preventing mouth sores was during Taxotere I sucked on ice and after every treatment I had a new toothbrush and always used sensitive toothpaste.

    Hahlyn

  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited August 2017

    I didn't get mouth 'sores'. But after my first TCHP, my gums started to bleed (I had healthy gums) and it felt as if the lining of my mouth was falling apart. So I switched to an "extra soft" toothbrush (from a "soft" one) and didn't have bleeding gums anymore. And I used the baking soda & salt rinse whenever the lining of my mouth felt weird. I didn't develop any bad mouth issues, other than bad taste buds and food texture issues. I also flossed at least once a day.


  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    I actually used a "baby" tooth brush. Mouth sore were horrible.


  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    I found a little red spot on my gum last night 😓😓😓 that will be the end of me using electric toothbrush and using the soft toothbrush.

    Bella - I flossed once a day also. I really don't want to give up my oral health.

  • Leatherette
    Leatherette Member Posts: 448
    edited August 2017

    OMG, the one on the tip of my tongue hurts so much it is making me cry, and I even took ibuprofen.


  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Oh Leatherette, can you dab some Benadryl on it to numb it? I'm so sorry!


  • gingersnaps15
    gingersnaps15 Member Posts: 2
    edited August 2017

    My dietitian told me to make a paste from L-Glutamine powder (which is an amino acid) and put it on the sores. She also told me to use it as a mouth rinse.

    I haven't had any mouth sores yet, but I've done some research and others seem to have had luck using it.

    You can buy it at GNC, Amazon and other health food stores. Now Foods L-Glutamine Pure Powder is available on Amazon.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Ginger, L-Glutamine Pure Powder in Amazon is over $45, but the L-Glutamine powde in gnc is only 9.99. What's the different of this two?

  • Leatherette
    Leatherette Member Posts: 448
    edited August 2017

    I had L glutamine anyway because it is supposed to reduce neuropathy, and I am sitting here sticking out my tongue with the paste on it. I will swish with it, too. I'll let you know if it helps. I have Natural Factors L glutamine, and I don't remember how much it cost, but it wouldn't have been $45.



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