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Topic: Long Term Taste Loss from chemo

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.

Posted on: Oct 27, 2018 05:48AM

Pamela23 wrote:

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

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/5/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/19/2017
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Oct 27, 2018 07:54AM Spookiesmom wrote:

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?

Dx IDC, Stage IIIA, Grade 3
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Feb 10, 2019 01:06PM Meowmmy65 wrote:

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!

Dx 8/31/2017, IDC, Right, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/2/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 11/10/2017 Lumpectomy: Right Chemotherapy 12/7/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/7/2017 Herceptin (trastuzumab) Targeted Therapy 3/1/2018 Perjeta (pertuzumab) Radiation Therapy 6/11/2018 Whole-breast: Breast
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Feb 10, 2019 06:55PM Pamela23 wrote:

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?


9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/5/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/19/2017
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Feb 11, 2019 11:28AM WC3 wrote:

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.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)

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