Long Term Taste Loss from chemo

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Pamela23
Pamela23 Member Posts: 510
edited April 2019 in Managing Side Effects of Breast Cancer and Its Treatment

I finished chemo in January 2017 and still don't have my taste. I did TC. Anyone else experiencing long term taste loss?

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2018

    I had a severe allergic reaction to taxotere and it left my tounge numb. My taste buds were damaged but I can still taste things. Is something similar going on for you? How is your sense of smell? Maybe a visit to an ear, nose, throat Dr?

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  • Meowmmy65
    Meowmmy65 Member Posts: 134
    edited February 2019

    I haven't been able to smell anything at all since June, and I finished chemo in March 2018. Because I can't smell, I can't taste nuance of flavor. I can tast sour, salty, bitter, sweet, but no herbs. I can't taste garlic. I haven't been able to find anyone else who has lost their sense of smell like this. My MO said it is very rare. In 21 years of practicing oncology, I am his only patient with these meds to have this reacion. There has to be someone else in this forum who has had this!

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  • Pamela23
    Pamela23 Member Posts: 510
    edited February 2019

    Meowmmy65--I feel the same way. I was told I was my oncologist's only patient this happened to. I went to an ENT and he looked up my nose for nodules, although I informed him it was secondary to chemo, and he basically said to try a bigger teaching hospital but as far as he thought, it was unlikely I'd get my taste back. Since then I have reached out to smell and taste centers (there are several in the US) and I have written to scientists who study taste as well as chemosensory foundations. There's nothing that can be done but I'm just curious about the diagnosis--did chemo kill my taste receptors or are the nerves from the taste receptors to the brain damaged? I;d really like to know! I have been told taste is 80-90% smell so the doctors are surprised I can actually smell but not taste.

    There is a charity in the UK who support people with taste/smell disorders. Taste disorders are rarer than smell ones, so maybe you'll find some information on their site: http://www.fifthsense.org.uk I plan to go to FL in May to their SmellTaste convention they are holding for people who have lost that sense.

    Have you been to an ENT?


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  • WC3
    WC3 Member Posts: 1,540
    edited February 2019

    I lost my sense of smell from a virus once and it took weeks to return. I didn't have any noticeable sense of smell alterations during chemotherapy but I did experience taste alterations. I am 4 months PFC and it is largely resolved but every once in a while somethings still have a "chemo taste" to me.

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  • bravepoint
    bravepoint Member Posts: 404
    edited March 2019

    You are not the only one! I finished chemo 2 years ago and still can't smell much or taste food properly.

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  • Meowmmy65
    Meowmmy65 Member Posts: 134
    edited April 2019

    Pamela23 - Saw a neurologist and ENT. I've had brain mri, eeg, and we've looked up my nose, and everywhere else. I will check out that website and see if there is information I can use. Thanks!

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  • Pamela23
    Pamela23 Member Posts: 510
    edited April 2019

    I am going to a conference in FL next month held by the University of FL's smell and taste center. Hoping to get some answers. Is it burned out taste receptors, or nerves from taste receptors to brain that were damaged? Will I ever know? Hopefully someone can point me in the right direction.

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