Has Anyone Experienced Serious Side Effects from Tamoxifen?

I have had zero side effects AND lost 7lbs. I take it first thing and it doesn’t make me hungry until late in the day. Almost 50% of women have no side effects

Preliminary studies have shown improved outcomes if tamoxifen is taken at night but of course side effects should be considered

I have been on tamoxifen since 4/24. ILC stage 1A no lymph nodes involved. I had a dmx because I have CHEK 2. When I first started tamoxifen I had some bone pain in lower legs. That went away. I then noticed some mood changes so I went back to the gym and that has helped a lot. I have had some hair loss and slight headaches but it’s manageable.

I’m stage 2a, ATM mutation, did lumpectomy, chemo, radiation, now on ovarian suppression and aromatase inhibitor since August 1st. I have some joint pain and hot flashes but exercise and yoga have helped a lot. The post treatment depression is harder than I imagined and it’s hard to know how much of it is the near total lack of estrogen.

I was on tamoxifen for six years after my first diagnosis in 1994, no serious side effects for me. Best wishes.

I’m supposed to start too :( very concerned with the low libido concerns, all vaginal dryness, hair loss and weight gain and depression.. basically there isn’t a side effect that seems acceptable to me. Im gunna try it at some point but literally will not be able to handle even the smallest one, could send me over the edge as even before the c dx i was hanging on by a thread. Helpful to hear there are some that don’t experience any SE’s but that does not seem to be the majority

Take it one step at a time. We all react differently. I’m on AI and ovarian suppression and I’ve had some joint pain and hot flashes but they can get better over time. Dryness can be managed (I’ve found some great products). As for depression it’s hard to know how much is due to the meds and how much is due to what we’ve been through and what lies ahead. Antidepressants can actually help reduce menopause side effects. And you can always try changing meds, time of day, etc. I know it’s easier said than done but exercise (walking, yoga, weight bearing) can help with most of the side effects.

I'm stage 1a, ATM Mutation,HER 2+ & just recently had bilateral masectomy reconstruction DIEP flap surgery in July which didn't go well still recovering......but I've been on Tamoxifen for a year now & I've had hair loss, hand & lower leg joint pain & hot flashes unfortunately. I do take it at night, which works better for me.

Gina would you mind sharing your decision to do a bilateral mastectomy? As an ATM carrier, I’m thinking about eventually doing so.

Hi Dina, I had a high chance of reoccurrence from what my oncologist said so she recommended doing both breast and with my ATM gene mutation implants wasn't a option for me.

I was on Tamoxifen for 2.5 years before switching to Letrozole. No severe reactions other than cold hands and some hair loss. Changed medication because that is standard procedure with my oncologist.

Hi Gina, thank you for sharing. I’m not sure I understand. A genetic risk shouldnt preclude you from getting implants, unless the DIEP was to avoid the very rare risk of ALCL?

Yes I had only a low dose 10 mg every othet day so after 6 pills I had to quit...I don't like that I cannot take it but I needed to get back to work to support myself...could not sleep...fatque...aches...vibrations areas of my body...scarry pains... plus depressed like, not me!...I could not go on. My cancer was encapsulated and just 7mm and noninvasive and I had partial breast radiation which I also got really fatigued from. My doctor said an AI med would be the same so he agreed I have to work...so off to work I go.

Thank you everyone!!! I’m now on my 3rd week on Tamoxofen. So far the side effects I’m feeling and seeing are: Hair loss (clumps of hair every time I shower) Nausea so I take Zofran Constipation from the Zofran and Tamoxifen Fatigue (but could be from post radiation side effect) I try to walk daily and have PT once a week I do get hot a lot in the middle of the night.

I had stage two breast cancer 3 1/2 years ago radiation no chemo. I promised my doctor I would take tamoxifen for one month. I was miserable, hot constant hot flashes, and mood swings. I am 78 years old and opted for quality of life versus longevity.  In addition, I take low-dose Estradiol , Which did not make my oncologist happy, but I know my body and I feel wonderful. Not everyone has to buy into the protocols. I wish there was an estrogen, blocking drug that did not make me so miserable

I will be starting Letrozole. . What side effects have you had. This is the first one he has put me on.

Joint pain, intense sweating…not all the time on either but enough to be annoying. Just saw new oncologist and she explained side effects of others so we decided to stay on Letrozole

Many community members have shared their experiences with tamoxifen, and while some do report side effects, others find them manageable or minimal. It's completely natural to feel concerned before starting a new treatment, and connecting with others who have been on this medication can provide valuable insights and reassurance about what to expect.