Long Term Taste Lost--still no taste after 6 months PFC

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Pamela23
Pamela23 Member Posts: 510
edited August 2018 in Managing Side Effects of Breast Cancer and Its Treatment

Anyone else have long term taste loss? If so, when did it come back?

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  • makeiki3
    makeiki3 Member Posts: 23
    edited July 2017

    I lost my taste buds and sense of smell when I first started radiation therapy while I was still getting Herceptin/Perjeta infusions. My PP made a referral to an ENT who found that my nerves in the nasal cavity were permanently damaged. The prognosis is not good. I remain hopeful and positive. I can discern sweet but cannot distinguish between foods. The loss of both these senses has seriously compromised my quality of life....and so it goes. I wish you all the best and hope you have a better prognosis.

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  • Pamela23
    Pamela23 Member Posts: 510
    edited July 2017

    I am sorry to hear that. I'm assuming git was the nerve damage front he chemo. I have my sense of smell but only a bit of taste--distinguishing between sour/sweet/spicy but no flavors. I had 4 doses of TC and would just be starting to get some taste back and then I'd have another dose. So far my MO, surgeon and RO say they aren;t worried. I have concluded myself that it has something to do with a damaged nerve. Why do those who have chemo AND radiation on their throat for cancers in that area get it back but they think yours is permanent? I have been in those forums and they said it took them up to 2 years to get it back. I am still hopeful. I agree, the quality of life is compromised with this. I can;t imagine the smell gone as well. I'm so sorry.

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  • Murfy
    Murfy Member Posts: 342
    edited August 2018

    Hi Pamela: It has been 5 mos post chemo for me and I still have very little taste. Was wondering if you have seen any improvement over time?

    From my reading, Taxotere is the likely culprit. What about you? Its short-term effects are on taste buds, but may have long term effects on nerves (cranial nerve IX relays taste). Hoping sensation comes back soon. My DH recently reported that the birthday carrot cake I fixed him tasted really bad...and, I couldn't taste it at all!

    Here is a good article about loss of taste from chemo:

    https://www.omicsonline.org/open-access/management...


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