Tomoxifen and taste

LindaLempert
LindaLempert Member Posts: 5
edited March 2014 in Breast Cancer #1
I was diagnosed almost two years ago with DCIS, had a mastectomy and tran-flap reconstruction. I'v been on tomoxifen for 18 months and have never seen anything about this. About three months ago my taste kinda went crazy. I am having trouble eating different things. Red meat, pork and chicken are really nasty. I do best on pasta, bread, cheese and lettuce. Cokes are out and so is chocolate. It is starting to drive me crazy. I've been to the doctor, I've checked to see if it was one of my other meds and I stopped taking celebrex but nothing seem to work. My sister was just dx with colon and is currantly on chemo. She's having problems with her taste also, but was told that happens with chemo. I never had to have chemo and my sis thought maybe it might be the tamoxifen. Has anyone out there had this experience?
Linda L.

Comments

  • krisrey
    krisrey Member Posts: 194
    #2
    Hi Linda,
    I have never heard of such a thing with Tamox. In another post, I posted that I called the American Cancer Society and spoke with a nurse who in turn put my questions regarding tamox to the research dept. You might want to try this to help get some answers, I found they were very helpful.
    Good Luck!
    Kris
  • troyryans
    troyryans Member Posts: 24
    #3
    Linda,

    I have been doing quite a bit of research on Tamoxifen and its side effects lately (although I certainly don't profess to be an expert!!) because I am scheduled to begin Tamox next week. I will pass along what I have read from numerous websites and information from my doctor. Hopefully this will help to answer some of your questions.

    Chemo alters the receptor cells in the mouth to tell your brain what flavor is being tested. The sense of smell can also be affected. These sensations should return to normal several weeks after treatment is stopped (which for a 5-year tamoxifen treatment that is a long time!). My brother-in-law experienced the same changes in his taste buds while undergoing chemotherapy for his non-Hodgkins Lymphoma.

    Some women who take tamoxifen experience dysgeusia, which is a distorted sense of taste, such as a metallic taste. That is because although not chemotheraphy, tamoxifen contains chemotherapy agents. Please see the website www.asco.org (American Society of Clinical Oncology) where this is discussed. According to this site, 35-70% of those tested experienced such a change in the taste buds. (Why such a wide range of percentages is beyond me!)

    Medications that normally distort taste include antithyroid preparations, captopril, grisefulvin, lithium, penicillamine, procarbazine, rifampin, vinblastine, and vincristine. Nutritional deficiencies of zinc and B12 can also change taste.

    Of course, everyone's reaction to certain medications is unique. One person may experience a change while another will not. With anything, I would mention any symptom you are experiencing to your onc, which I think you already have.

    I don't know if this helps, but thought I would pass my findings along just in case.

    Best wishes,
    Kathy
  • lindatn
    lindatn Member Posts: 229
    #4
    I have been on Tamoxifen for nearly two years, three and a half months after finishing chemo,had surgery and radiation after chemo. I haven't noticed any change in any thing but my aching body on tamoxifen. But if your body says no red meat, pork, chicken, coke or chocolate remember the old saying, listen to your body, I can't see where you would need any of the above. God Bless and keep healthy. Linda
  • DoubleKnot
    DoubleKnot Member Posts: 41
    #5
    Hello Linda,

    YES, my taste buds have changed totally since I started the Tamoxifen. I didn't realize why my tastes changed either. I had drank Pepsi all of my life from the time I was very little, but after starting Tamoxifen, that totally reversed. I barely drink Pepsi or pop now, and only coffee tastes good to me. I had NEVER been a coffee drinker, except maybe once in awhile during the Winter months. There are other things that don't taste right now to me either because of the change in my taste buds. I have been on the Tamoxifen for almost one year now, but I am going to talk to my Oncologist about switching to Arimidex. On the national news, they said that it is suppose to be much better than Tamoxifen. I am going to do a follow-up with my doctor to see if he agrees.

    Have you noticed being very tired since you started the Tamoxifen? That is another change that I noticed in myself, but I didn't know whether it was from the Tamoxifen, or stress from being a fulltime caregiver to my husband for the past 10 years.Don't panic over the change in tastes, I think that it is just a "side effect" for us. What other side effects have you noticed in yourself since you started taking the Tamoxifen? Sharing the information will help both of us. I am so glad that you posted your comment. Thanks, it helped me.

    Take Care,
    DoubleKnot

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