Seeking advice on managing Tamoxifen side effects

Communities›In Treatment For Breast Cancer›Seeking advice on managing Tamoxifen side effects

SD

Community Member

10 months ago

Hi, I have been on Tamoxifen for 4 months after stage 1 IDC. I had a lumpectomy and 20 rounds of radiation. The side effects of tamoxifen are terrible. Headaches and neck/back pain are the worst. I get at least 1 headache a week where I have to lay in a dark room for an entire day. My oncologist suggested seeing a neurologist for pain management. Where I live, the earliest appt is Feb. 2026. I already have sumatriptan (from prior to dx) that works sometimes. I am very sensitive to meds so I am not excited about adding anything new. I’m considering talking with my oncologist about stopping the tamoxifen. I feel the stress it’s putting my body under may not be worth the benefit. I am stretching daily, exercising, eating an anti-inflammatory diet, supplements… any suggestions? Has anyone experienced this or stopped tamoxifen? Thanks!

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Accepted Answer

Managing Tamoxifen side effects can be incredibly challenging, and it sounds like these symptoms are significantly impacting daily life. Many community members have shared similar experiences with severe headaches and pain while on hormone therapy, and have found various strategies helpful - from working with their healthcare teams to explore timing adjustments or alternative medications, to discovering specific pain management techniques that work for their bodies. Consider discussing all available options with the oncology team, including potential alternatives or supportive care approaches that might help reduce these difficult side effects while maintaining treatment benefits.

3+ patients found this helpful

DT

Community Member

6 months ago

They have me stopping them for 5 days the tamoxifen but I have all the symptoms you have and it is horrible and it's ruining my personality I just was proposed to a Christmas and I just feel like the bitch from hell for no reason and apologizing left and right so all I do is cry about everything so we'll see where it goes after this 5 days

SD

Community Member

6 months ago

How long have you been on it? I was told things can level out at the 3 month mark… I hope the 5 days off gives you some relief:)

SD

Community Member

6 months ago

Update- spoke to my oncologist. I am taking a 2 month break from Takoxifen and will meet with my oncologist then and decide next steps.

DT

Community Member

6 months ago

They had me take only half a pill. Go back in six weeks to see how this does I will let you know how it goes in a few days

1

LH

Community Member

6 months ago

I was started on tamoxifen and could not tolerate it. I am very sensitive to all meds. We tried three different meds and I could not tolerate any. Finally she decided on aristozole shots. I tried for two months then took off one month. Went back to try again and did it for three months. I had bone pain and I was very tired all the time. Could not take care of my husband who had dementia. So If decided my quality of life for however long God gives me is more important than suffering for five years with a medicine that may or may not make a difference.

1

YA

Community Member

6 months ago

Tamoxifen changed so much for me. Terrible side effects and it damaged my liver, after only 2 months! I will now love and live life and do all I can to live healthfully.

1

CA

Community Member

2 months ago

Managing Tamoxifen side effects can be incredibly challenging, and it sounds like these symptoms are significantly impacting daily life. Many community members have shared similar experiences with severe headaches and pain while on hormone therapy, and have found various strategies helpful - from working with their healthcare teams to explore timing adjustments or alternative medications, to discovering specific pain management techniques that work for their bodies. Consider discussing all available options with the oncology team, including potential alternatives or supportive care approaches that might help reduce these difficult side effects while maintaining treatment benefits.

Seeking advice on managing Tamoxifen side effects

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