Kadcyla Terrible tongue and bottom lip pain

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Treat63
Treat63 Member Posts: 1
edited March 2018 in Stage IV/Metastatic Breast Cancer ONLY

I am on my second lot of Kadcyla and I am in such pain with a raw tongue and swollen bottom lip pain, has anyone experienced this and is there an alternative treatment, can;t take it any longer.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2018

    Hi treat63,

    Sorry to hear you've been having these side effects.

    We're bumping this topic for you so that more members will see this and hopefully offer some help and support around this issue.


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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2018

    Hi again Treat,

    We're so sorry you haven't received any support or advice here yet -- we're hoping with us posting again, this thread will get bumped back into Active Topics once again and someone will weigh in. In the meantime, perhaps this page from the main Breastcancer.org site on Mouth and Throat Sores can help.

    We hope you get relief soon!

    --The Mods

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited March 2018

    Treat,

    I don't take Kadycla, but I have had experience with mouth troubles. You need to go see your Doc in case you've developed thrush. It is an oral, fungal infection that is painful as all get out. I've never had it, but have had several animals deal with it. It looks like their tongue and mouth mucosa has been abraded, and sometimes there is a white film on the painful tissue.

    If it's not thrush, ask your Doc for a prescription for "Magic Mouthwash". It's a lidocaine mouthwash that numbs the painful areas. It doesn't taste marvelous, but it does the job. I kept mine in the frig - the cold tamped down the taste and was soothing.

    It's also a good idea to check in with your dentist at your next cleaning, and get any sharp edges on your molars buffed down. As we age, those molar edges get very pronounced, and they get really do a number on the sides of your tongue.

    Hope you get some relief soon!

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  • Reikion
    Reikion Member Posts: 50
    edited March 2018

    Hi,

    It could also be an allergic reaction. I took TDM1 (kadcyla) for a whole year. I had an allergic reaction to it and was given benadryl and hydrocortisone starting my second treatment. Please contact your doctor soon for something to help relieve your pain.

    Another drug that was given with chemo --- dexamethasone gave me a severe allergy --- rash at infusion site as well as foliculitis on scalp. I was given dexamethasone during second chemo and stopped thereafter. I only used benadryl and hydrocortisone with each chemo after that and had no more issues.

    I hope your doctor can prescribe something to relieve your pain soon.

    Wishing you the best!


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