Burning mouth and Herceptin

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Susan144
Susan144 Member Posts: 19
edited May 2018 in Managing Side Effects of Breast Cancer and Its Treatment

I am having burning mouth while doing Herceptin every three weeks. It varies from intolerable (feels like strep throat in throat, ears, tongue, roof of mouth, everywhere) to low-level (feels like I just took a bite of hot pizza so a couple spots on the roof of my mouth are burned.) I have only two more treatments and I think I will ask to stop. I am incredibly fatigued now, much worse than a few months ago. The fatigue and burning mouth seem to go together.

I looked up "burning mouth syndrome" on the web. Seems that post-menopausal tend to get it. I sure hope that getting off Herceptin will squelch it.

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  • Leatherette
    Leatherette Member Posts: 448
    edited April 2018

    I am having the same thing, but it doesn’t get as bad as your strep throat feeling, more like I drank some soup that was too hot. I assumed it was left over from chemo, which gave me bad mouth issues. Maybe it is the herceptin. I am not bothered enough to stop taking it.

    I hope you feel better soon.



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  • Susan144
    Susan144 Member Posts: 19
    edited April 2018

    Thanks for responding, Leatherette. My fatigue used to kick in around 2:00 PM but now it happens around 11:00 AM! And the burning seems to accompany fatigue. Ugh! I take about a 2 - 3 hour nap... This is just lousy.

    It is nice just to have someone respond when you feel so awful!

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  • bluepearl
    bluepearl Member Posts: 961
    edited April 2018

    I have burning mouth syndrome.....so many causes including certain drugs. I clench my teeth and tension shows up in that area. Had it fo well over 10 years now. Mostly in the evening. I find anything with hot pepper in it actually helps. So do dry mouth sprays etc. I think I am going to continue with magnesium as it can help a lot of things...no more than working up to 600mg per day though. And NOT magnesium oxide....magnesium citrate...or magnesium supplement that says "highly absorbable" on it. Also, make sure you have a good level of Fit. B12...often found lacking in people with this disorder.

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  • bravepoint
    bravepoint Member Posts: 404
    edited April 2018

    I have burning mouth syndrome as well and never had herceptin. Mine started during Taxol. I have been finished chemo for over a year and it has gotten worse not better. Certain foods do aggravate it, vinegar, bananas, lime juice and too much salt. When I avoid these things it is better. I use Biotene mouth rinse for dry mouths. I am going to ask my MO when I see him this week if there is anything else I can do.

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  • Susan144
    Susan144 Member Posts: 19
    edited April 2018

    I got mouth sores during Taxol. And had sore throat, ear pain. But now it has gotten worse, even though the Taxol ended last June. Thanks for the tips, ladies. I have magnesium citrate around here somewhere, gonna try it. And Biotin also.

    Odd that bananas aggravate yours, bravepoint. Gonna nibble on one now and see what happens!

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  • bravepoint
    bravepoint Member Posts: 404
    edited April 2018

    Susan144 - I know! I can eat clementines but not a banana.

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  • Justsosassy1
    Justsosassy1 Member Posts: 4
    edited May 2018

    Thank GOD I'm not the only one, I hate that anyone has not go through this period but I thought I was the only one.

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