Forum Discussion

Sue_w1's avatar
Sue_w1
Member
3 years ago

Tamoxifen - efficacy of low dose treatment and reduction of negative side effects

I had hormone positive BC and was prescribed Letrozole, which I could not continue because of side effects. I was then prescribed tamoxifen, 20mg a day for eight years, but again the side effects really kicked my butt! Tried changing brands, some people have success with that, but it did little for me and I was really freak'n ready to tell them where to shove their medication...
...I even contacted my breast care nurse and rattled off the list of side effects I was struggling with. She contacted my oncologist who prescribed a low dose of Venlafaxine. I looked into that and it was only good for the hot sweats and had a host of nasty side effects of its own. I felt he had totally ignored the other issues I had spoken about. I can deal with the hot sweats, but the constant joint pain, weakness in my hips, fatigue, constant tears, cramps and RLS so bad I wake up with sore calfs, thighs and butt muscles - feeling like I ran a marathon in what little sleep I did get was wearing me down. I couldn't function like a normal person! Worse than all of that, is the effect on my mind, my creativity has fled along with my ability to focus - I just don't feel like me. Exercise, meditation, diet etc are not cutting it, I was ready to throw in the towel and junk the tamoxifen until I came across this study:

 The Journal of Clinical Oncology (An American Society of Clinical Oncology Journal)  : 

Randomized Placebo Controlled Trial of Low-Dose Tamoxifen to Prevent Local and Contralateral Recurrence in Breast Intraepithelial Neoplasia

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6601429/

Here are two excepts from the study:

"In the present phase III trial, we assessed whether tamoxifen administered for 3 years at 5 mg/d is effective at reducing DCIS, invasive recurrence, or contralateral breast cancer from breast intraepithelial neoplasia without significant toxicity in terms of serious adverse events and patient-reported outcomes." 

"CONCLUSION
Tamoxifen at 5 mg/d for 3 years can halve the recurrence of breast intraepithelial neoplasia with a limited toxicity, which provides a new treatment option in these disorders."

I am NOT a doctor or medical professional, just someone struggling with the effects of treating this bastard of a disease. I am going to use this study to start a conversation with my oncologist. I hope this information can help others who are struggling to start their own conversations with their medical teams too.

Tell me what you think...

Thanks Sue_w


  • In 2019 I was diagnosed with Triple negative breast cancer and had a left breast masectomy and chemo. Now in 2022 I was diagnosed with hormone positive breast cancer in my right breast and had a second masectomy. I have been on Tamoxifin for 5 months but after seeing my Oncologist I have stopped tablets. I had nausea,severe depression,dizziness,and so tired I stopped most activities. I am post menopausal and 75 years old. I had to think about my standard of life and also the fact that the Triple Negative Cancer is the more aggressive type. I would like to hear from anyone who has had two types of breast cancer and also has had major side effects from Tamoxifin. 
  • Hi @Sue_w 
    Saw my onc on Wednesday & asked her if this is an option for me but she said the study really only applies to those with DCIS. 
    I had invasive carcinoma so sadly she didn’t think it an option for me.
    Thanks for sharing though I’m sure it will be helpful information for many other readers.
  • Hi @Afraser, @arpie, @Julez1958 and @HappySoul,
    Thank you for your thoughts. I've been a half dose of Tamoxifen for a few weeks now and the side effects have lessoned A LOT! I am still getting some but not too much that I can't handle them. I am going to talk to my breast care nurse this week and then the oncologist. I have questions to ask them about Systemic Multi-enzyme therapy and if that could be used along with the reduced tamoxifen. I need to find out more first. 
    @HappySoul, I'm sorry you went through this too. I think if I had tried to wait out 2 years, I would have been in the same place. As it was I wasn't far from it. I was emotionally down and crying several times most days but I knew it wasn't depression. 
    I will let you all know what the professionals say, all I know is that I feel so much better now and I was annoyed that the side effects were dismissed so easily. Quality of life is everything.
    Take care everyone :)
  • Hi @Sue_w I too had very similar side effects to you. I took Tamoxifen for 2 years & nearly had a complete mental health breakdown before I realised it was the cumulative effects of the side effects particularly the lack of quality sleep. Letrozole felt even worse & the side effects from Venlafaxine dreadful.
    I now don’t take any hormone blockers, it’s scary because I don’t know how much risk I’m at for the cancer to come back. But I literally feel sick thinking about taking oestrogen blockers again. 
    Maybe a low dose Tamoxifen would be a more happy medium. I might mention this study to my onc too.
  • @Sue_w - so sorry that you are having those extreme side effects - it is not only physically debilitating, it is totally depressing too.  No quality of life :(  I was like that 4.5 years ago - started on Letrozole (6 weeks) then Exemestane (6 months) but now been happily on Anastrozole for the last 4 years .....  It still isn't 'perfect' - but way better than my experience with the first 2.

    Everyone reacts differently to all of the AIs - some just sail thru with no real side effects whilst many of us cop varying degrees of it, some, to the extreme  ..... The idea of a smaller dose over (possibly) a longer period of time makes complete sense to me - as some is always better than none (and they reckon over 30% stop taking the AIs completely within 2 years of starting, due to side effects.) https://ascopubs.org/doi/10.1200/jco.2011.38.0261

    Keep us in the loop on your Onc's comments, for sure.

    take care

  • Hi @Sue_w
     Am so sorry you are having such debilitating disease effects on tamoxifen.
    Is getting a second opinion from another oncologist an option?
    I know you started on Letrazole and know that some ladies had lesser side effects with the other AIs.
    Hope you get some relief / resolution.
  • I’m all for new advances! Anything that can reduce cancer in any way, at any time is worth looking at. Be interested in your oncologist’s comments. It is however worth bearing in mind the definition of intraepithelial neoplasia. 

    Intraepithelial neoplasia (IEN) is the development of a benign neoplasia or high-grade dysplasia in an epithelium. The exact dividing line between dysplasia and neoplasia has been very difficult to draw throughout the era of medical science. It varies between persons. In the localizations shown below, the term intraepithelial neoplasia is used to describe more accurately what was historically referred to as epithelial dysplasia. IEN is not cancer, but it is associated with higher risk for developing cancer in future. It is thus sometimes a precancerous condition.