Anyone taking 5 mg Tamoxifen: Do you have side effects with 5 mg?

Posted by sue417 @sue417, Feb 17 4:50pm

Hi
Just wondering if anyone on here takes 5 mg of tamoxifen and if so do you have side effects with 5 mg. That's what my oncologist said he will put me on once I'm done on my treatment

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@adh0824

I am a 71 year old woman with ADH who has been taking a weekly total of 30 mg of tamoxifen (10 mg every M, W and F) since 12/18/2023. I have not noticed any side effects connected to the tamoxifen at this dose, which is slightly less than the daily 5 mg.

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Hi
Thanks for the info. So you take weekends off. I wondered about doing 10mg every other day

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@sue417

Hi
Also are you taking it in the morning or evening.
Thanks

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I’ve been taking morning. I haven’t tried it in the evening.

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@kods

I’ve been taking morning. I haven’t tried it in the evening.

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Hi
Are you noticing any fatigue in the daytime just asking because I have fibro myalgia so I don't want to add to my fatigue in the day

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@sue417

Hi
Also are you taking it in the morning or evening.
Thanks

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Hi, my oncologist suggested taking it at night with the hope that I'll be sleeping when the worst of the side effects occur. I don't really know if it matters.

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@wellgirl

Hi, my oncologist suggested taking it at night with the hope that I'll be sleeping when the worst of the side effects occur. I don't really know if it matters.

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Hi
Yes that's what mine said so start tomorrow
Thks

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@sue417

Hi
Thanks for the info. So you take weekends off. I wondered about doing 10mg every other day

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Yes, no weekend doses, just 10 mg every M, W, and F and I have had no side effects. I just want to clarify I have not been diagnosed with breast cancer, but with a pre- malignant marker (Atypical Ductal Hyperplasia). This regimen was prescribed by my doctor at the high risk breast clinic at Mayo Rochester after my wide excision biopsy (lumpectomy) confirmed ADH but no cancer. The ADH plus dense breast tissue and no children puts me in the high risk category. She said research has shown this Baby Tam dose” as they call it, can cut my 30% + lifetime risk in half. I read the research, was impressed with the results and that the side effects at this low dose level were comparable to the placebo. So I decided to take it. I have been pleased so far.

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@adh0824

Yes, no weekend doses, just 10 mg every M, W, and F and I have had no side effects. I just want to clarify I have not been diagnosed with breast cancer, but with a pre- malignant marker (Atypical Ductal Hyperplasia). This regimen was prescribed by my doctor at the high risk breast clinic at Mayo Rochester after my wide excision biopsy (lumpectomy) confirmed ADH but no cancer. The ADH plus dense breast tissue and no children puts me in the high risk category. She said research has shown this Baby Tam dose” as they call it, can cut my 30% + lifetime risk in half. I read the research, was impressed with the results and that the side effects at this low dose level were comparable to the placebo. So I decided to take it. I have been pleased so far.

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Hi
Thank you for clarifying that that is good to know I had dcis in situ but there was a slight break and one wall which put me from stage 0 to Stage 2 but it was so microscopic the doctors not concerned I did have a lumpectomy and Sentinel node surgery my Sentinel node surgery was no cancer so I only have to do tamoxifen for 3 years

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@sue417

Hi
Thank you for clarifying that that is good to know I had dcis in situ but there was a slight break and one wall which put me from stage 0 to Stage 2 but it was so microscopic the doctors not concerned I did have a lumpectomy and Sentinel node surgery my Sentinel node surgery was no cancer so I only have to do tamoxifen for 3 years

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My doctor wants me on it for 5 years.

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@sue417

Hi
Are you noticing any fatigue in the daytime just asking because I have fibro myalgia so I don't want to add to my fatigue in the day

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Yes, I notice by the end of my work day…4-5ish I’m pretty tired. I can’t say for certain it’s related to the tamoxifen but seems like it’s more noticeable since taking it. I’m afraid to take at night as I don’t want to disrupt sleep.

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@sue417

Hi
Thanks for the info. So you take weekends off. I wondered about doing 10mg every other day

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I did 10 mg. every other day for 2 months. On that dosage, the urgency to urinate was always there and the feeling that everything from the waist down was going South (itchiness, a non-normal feeling), but the EXTREME fatigue on 20 mg. a day was not there and the UTIs did not start until I went onto 20 mg. daily, by doctor request. I was on the 10 every other day from April 23 (2023) until June 23 (2023). On that date my doctor (who knew I was doing this from the beginning) told me that the Italian Women's Study of 700 women that I was basing my dosage on did not apply to my tumor, because their tumors were "in situ" and mine had broken through, so I complied and went onto the 20 mg. a day (140 a week, versus 40 a week) from June 23 until Aug. 30, 2023. At that point, I had such extreme fatigue that I could not stay up for more than 3 hours at a time, had non-stop UTIs (one would not respond to Amoxicillin or another strong antibiotic and gave me a fungal infection on the rebound) and my bloodwork deteroriated in 10 different measures, from the March 7, 2023 good report to the Aug. 30 bloodwork. I have not taken any of the "adjuvant therapy" drugs since, although my onco score was 29 and I am, of course, very apprehensive about a recurrence.

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