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MMAN
Member
4 years ago

Tamoxifen - side effects

hi there, I’m seeing the oncologist tomorrow to discuss treatment options but I’m ER 3+ and therefore very likely to go on Tamoxifen.  I’ve read that this can be taken for 5-10 years and wondering what side effects have been experienced.  I’ve heard that you gain weight and hair falls out so assuming this happens for the entire 5-10 years? 

7 Replies

  • @MMAN , I  had 4 months of chemo and I think I did really well. I didn't get sick, no mouth ulcers or nausea etc. Yeah I lost my hair but it grows back. I even like it short now. Sometimes I got tired but I still exercised daily with walks. It really helped me. You will get through it. 
  • @MMAN

    It’s not an unusual recommendation. As with hormonal therapy, chemotherapy affects different people in different ways. While hair loss is likely, other side effects are really variable. I worked through my six months of chemo because basically I felt remarkably well. There’s no way of knowing until you start. Best wishes. 
  • Hi, thanks.  feeling pretty down tonight.  Saw my oncologist who thinks it is best to do chemo (iv) for 6 months and then hormone therapy.  not sure i fully understand the reason, as my cancer is ER+ but she says the a few factors make her think chemo is better.  hard to stay positive.
  • Hi @MMAN, the treatment strategies are different for everyone and not everyone has side effects from all the treatments. I take tamoxifen and I am on this now for 1.5yrs so far. I have not gained weight really but naturally fluctuate 1 or 2 kgs. I dont I can loose weight. My oncologist suggested it is near impossible on tamoxifen. She also wants to discuss going on an AI next visit. Sometimes people start on one med and then go to another for various read. I initially had a few hot flushes when I started on this med and I do get fatigue, no hair loss. I think I was a little moody at the start but all that settled in a couple months. I am not sure if I am on tamoxifen or an AI for 5 or 10yrs yet. I try not to get too far ahead of myself and just stay in the moment. Good luck 
  • @MMAN

    I’ve been on an AI for over nine years. I had one bout of hair thinning (very limited) early on and the likely culprit was that my ‘normal’ shedding pattern had changed after my hair grew back. As every other aspect of my hair changed too (at least at the beginning), this seems reasonable! I have had no problems since. I didn’t gain weight. Sometimes it’s easy (comforting) to assume treatment is the cause, and sometimes it is, but not always. I’d been used to washing my hair almost daily, brushing when wet, blow drying, generally being pretty rough. Any hairdresser will tell you that’s not the best! I learned to take a little more care and now it’s normal to do so. Reactions to treatments vary immensely so best to start with as positive an attitude as possible. Remember, you can always stop. Best wishes. 
  • @MMAN  I was originally told when I was diagnosed that I would be on tamoxifen but when I saw my oncologist she put me on Anastrozole. 
  • Hi there!  Everyone reacts differently and it doesn't always follow that the side effects are an issue or maybe only one or two or maybe none.  As to which treatment - there's other factors like age, pre or post menopause et cetera
    Here's a link to a book on the topic that hopefully you can garner information prior to your appointment and be ready with some questions

    Hormone therapy and breast cancer (bcna.org.au)

    As you progress you will find us on the forum and the BCNA website a wealth of experience and information

    Take care and Best wishes with your appointment and ongoing treatment