Reaction to Tamoxifen

  • 6 replies
  • 269 subscribers
  • 584 views

Hi All,

New to this forum!

Following on from surgery/chemo/radiotherapy, I've started on Tamoxifen 3 weeks ago. This week I had a petty serious skin reaction and swelling all over my face. The Oncologist was very quick to say that the Tamoxifen wasn't agreeing with me, and now due to start Zoladex/Letrizole next week.

I feel quite anxious about this, and feel this decision was made so quickly. I was told there isn't an alternative to Tamoxifen for pre-mejopausal women, but I wondered if anyone here might have experienced this kind of reaction but switched brands instead of switching treatment altogether? 

  • I started on Letrozole which didn't agree with me. My knee became very painful, I already had problems before but this was much worse. Some people do have success with changing brands. It sounds like an allergic reaction or something. 

    Mylan is a brand I've heard others suggesting. Hopefully someone will be along soon who knows more. I am on Tamoxifen for the last year. X

  • Hi Sanjit, I had reactions with very itchy skin and did get some eczema. I found trying a different manufacturer of tamoxifen helped. Mylan and Workhardt are the 2 that I can take. The others I react with. It might be one of the fillers in the tablet that you are reacting too as they all use different ones. I think it’s worth discussing with your oncologist or breast care nurse about trying another manufacturers tamoxifen.

  • Yup, Letrozole + Zoladex injections monthly is the alternative for Pre-menopausal women. I’m on that myself and doing quite well.

    I didn’t switch from Tamoxifen to Letrozole though. Doc thought that it would be the better option even though I’m pre-menopausal. Given that my chances of recurrence are higher he said Letrozole is better for not getting cancer again in my case, the downside is the chance of osteoporosis for which I’m being monitored and given vitamin D daily.

  • Yup, got knee pain too. Not bad but constant.

  • Thank you - actually this was initially recommended too, but in my case because it had not yet spread the team were 50/50 split.

    Perhaps its the psychological aspect of going through the process of making the choice in the first place and then having that choice taken away from you. Good to hear you are doing well on this combination and hopefully it will suit me better than the Tamoxifen did :-)

  • Hi Sanjit

    I had a lumpectomy with radiation therapy, completed the radiation November 2023. I was put on Tamoxifen as I was pre menopausal. I had really bad side effects whilst taking Tamoxifen, rash, pain in joints, brain fog, fatigue, pretty much knocked me off my feet. My doctor told me to stop taking them. Which I did. January this year I started getting gorserol injections into my stomach. These injections work by inhibiting the overies and stop production of oestrogen, as my cancer is eostrogen receptive. The injections so far have been fine. No side effects. Another reason for these injections, in my case, was to bring me into menapause. To be prescribed another drug for people who are through the menopause. After my third monthly injection and a blood test, I had confirmation that I am now post menopausal. The new drug that I started to take at beginning of March this year is Letrozole.  So that’s what I am taking now, plus the monthly injections and all is well. I have noticed the joint pain is real and fatigue is also present. I guess it’s just try to get the balance right, what works for you. It’s a journey but keep trying and pushing forward.  If you feel that it’s not working for you then keep telling your doctor until you find what does work. I wish you luck and hope your walk to wellness is not too far away. 
    stay strong x

    Nicole