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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 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017
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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?

Reoccurrence 3-19. 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 Hormonal Therapy 9/25/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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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 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017
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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 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Mar 25, 2019 12:08PM bravepoint wrote:

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

Gail Radiation Therapy 4/17/2016 Whole-breast: Breast, Lymph nodes, Chest wall Dx 8/8/2016, IDC, Right, 1cm, Stage IIA, Grade 3, 1/5 nodes, ER+/PR-, HER2- Surgery 8/28/2016 Chemotherapy 10/6/2016 AC + T (Taxol)
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Apr 6, 2019 01:38PM Meowmmy65 wrote:

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!

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 Hormonal Therapy 9/25/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 21, 2019 07:46PM Pamela23 wrote:

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.

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 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017

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