Extreme Thirst on Tamoxifen

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RaeBeth
RaeBeth Member Posts: 3 Member
edited June 2023 in Breast Cancer #1

Hi. I was diagnosed with Stage 1 breast cancer at the end of February. I had genetic testing and I have no mutations for breast cancer. I had a lumpectomy with regular lymph nodes removed due to their thick appearance on a breast MRI, and I had 20 rounds of radiation. I did not not need chemo due to my low oncotype score. I am in my 40s and my menstrual cycle is normal so I was to begin taking Tamoxifen a week after my radiation ended, which I did, but within a couple of days, I started experiencing extreme thirst: I went from drinking 80 oz. of water a day to drinking 200 oz. of water a day. I notified my doctor and the NP had me come in for blood tests and urine tests because she insisted that I am diabetic. I told her that this only started a few days after I started taking Tamoxifen and that I read in the medication insert that patients should contact their doctor immediately. The NP said that people do not read the prescription inserts, and that a lot of information online is misleading. Again, I read this in the medication paperwork! Needless to say, the finger blood glucose test was a low score and all my labs and urine test came back normal except the urine test showed that I was drinking a lot of water. I am to stay off the Tamoxifen until I see the doctor at the end of next week but the NP said that the doctor probably will put me back on the Tamoxifen and I will have to deal with the side effects.

My desire for water has dropped since I stopped taking Tamoxifen. I think my extreme thirst is a bad sign because I have been allergic to other drugs before so this scares me. I listened to my body when I had allergic reactions to those drugs and those doctors told me to stop taking the medications.

Has anyone experienced extreme thirst while taking Tamoxifen?

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  • 30yearslater
    30yearslater Member Posts: 6 Member
    #2
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    Hi It has been almost 30 yrs. since I was on it and I didn't have the symptoms you are having. I was on it for almost 2 years. I had abnormal cells on my pap smear so I found literature about tomoxifen and after 2 years that happens and could lead to uterus cancer so I stopped taking it. No problems since. I think if I were you I wouldn't take it. Hopefully they can give you some other treatment. Good luck and always listen to your body.

  • RaeBeth
    RaeBeth Member Posts: 3 Member
    #3
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    https://csn.cancer.org/discussion/comment/1706479#Comment_1706479

    Thank you for responding to my question. ❤️ What you said makes me feel better. I have an appointment with my oncologist on Friday. I want a straight answer from her of the survival rate of someone with my particular cancer, etc., with and without Tamoxifen. Plus, trading one or more cancers for another and living with extreme side effects is scary. I understand that breast cancer cells are different than other types of cancer but that it is still a lot to process. I will post what happened after my appointment.

    Again, thank you. ♥️

  • 30yearslater
    30yearslater Member Posts: 6 Member
    #4
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    https://csn.cancer.org/discussion/comment/1706484#Comment_1706484

    I will be hoping and praying you get the care you need.

    Sometimes we have to get in their faces to make them do what's best. Stay firm and strong. Kath

  • RaeBeth
    RaeBeth Member Posts: 3 Member
    #5
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    https://csn.cancer.org/discussion/comment/1706493#Comment_1706493

    I met with my oncologist and she said that while this was an unusual side effect, she believes that it will go away over time. She said that she wants me to remain off the Tamoxifen for 2 weeks and then restart it. She said that given my Oncotype score, my change of recurrence is 3% with Tamoxifen and 5-7% without Tamoxifen. She said that there are limited options since I am premenopausal and if I do not take Tamoxifen then I will need to take a drug to suppress my ovaries. I did not ask her what my chance of recurrence is with an ovary suppressant drug.

  • Hilde56
    Hilde56 Member Posts: 2 Member
    #6
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    I too am on estrogen blocking drug, Arimidex. I was diagnosed in June last year and had lumpectomy and radiation. Tumor was estrogen positive. I am struggling with the drug. I have been on it for about 10 months. I have lost 1/2 of my hair, have body/joint pain, fatigue, weight gain. Every morning I weigh myself and lately I go up a pound each day this week.

    I am wondering what the recurrence rate is if I stop the estrogen blocker. Has anyone else chosen to stop the drug? I want to have good quality of life but I am pretty miserable right now. Thank you for any input you have.... Kathy

  • 30yearslater
    30yearslater Member Posts: 6 Member
    #7
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    https://csn.cancer.org/discussion/comment/1706695#Comment_1706695

    Hi I was on Tamoxifin in 1994-1996 I gained a lot of weight and once completed all treatments did a lot of walking and exercising daily. Took about 6 months bit I lost all the weight and felt great. Kath

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