Hi Everyone I have read in a few people' s posts that they suffer from some side effects from taking Tamoxifen. I am 42 years old and after I have my chemo I will be put onto Tamoxifen for 5 years. What sort of problems do you have and what have you done to ease these problems? I don't know much about cancer treatment so I am unsure whether there are alternatives or what sort of questions I should be asking my oncologist....I see her again on 27th October when I start Chemo. Any info would be appreciated! Thanks, Louise ps I have read the info in the My Journey Kit but it is very general and if possible I would love to hear some personal experiences if you are willing to share :)

Hi Louise, I have been on Tamoxifen for nearly 2 years and have not had any major side affects, just small anoying ones like - headaches, dizziness and nausea. It's not constant but its noticable and I have noticed that my finger tips go numb every now and then but not sure if thats a Tamoxifen thing or not. I hope this bit of info helps. So you start chemo next month? I wish you all the best and hope it goes as smoothly as chemo can. Tasha xx

I went on Tamoxifen for 4 months and I was in the group of women it doesn't work for...I am kind of glad I did';t stay on it though...these are the side effects I had Headaches anxiety (also possibly related to procesing cancer stuff post treatment) depression (as above) Achy legs (especially on the side with varicose veins) Fuzzy head I am now on Zoladex injections and the only real thing I have noticed apart from the long list of menopause symptoms is that i have gained a little weight but that can be from the menopause it self! I am soooo over all the drugs I am going for the surgery to have my ovaries out and there is a possible alternative to Tamoxifen called DIM or Indolplex...although no studies have shown it to be effective at all but in theory it MAY be effective I wasn't willing to stake my life on it personally and lets face it, that's what we're doing...What I found helpful was getting them to caluclate the differences in treatment options, ie with and without hormone therapy to see what kind of difference it will make...for me no hormone therapy at all meant a 30% reductionin my survival rate so I wasn't willing to try a herb that wasn't proven to work...there is just too much at stake...There is also another herb that they say may work but again I wasn't willing to chance it...I am all for herbal and alternative medicines but I also have 3 kids and don't want to play with my life like that either...Once I get my ovaries out I think I will be taking indolplex instead of aromatase inhibitors though, as once your ovaries are out I figure that's getting the estrogen pretty darn low anyways..... Hope that's helpful :O)

Hi Belinda, When you say you were 'in the group of women it doesn't work for', what do you mean, exactly? Are you talking about the side effects? Or did you get that CYP2D6 genetic test done? I would love to know more. Thanks, Sara

Tamoxifen side effects? | BCNA Online Network

109 Replies

Christine_L
Member
12 years ago
Oestrogen is also produced by our fat cells - one of the reasons one should try to attain one's optimal weight after BC. I am still trying to get there........ :-)
Helen_a
Member
12 years ago
Hi

This is my first time to post. I had a very early diagnosis last June, so lumpectomy plus sentinel lymph node removal last July, and on Tamoxifen since Nov. Surgery went well and great prognosis. However my side effects from the Tamoxifen is like an all over "buzzing" (not sure how else to describe it) - plus the tingling in hands, night sweats, hot flushes. I cant see anyone else commenting on this, so interested to hear. Almost like my nervous system is revving up - it is not getting any better and keeps me awake at night. Poss i will try some meditation?

Also I had ongoing swelling in the breast after surgery and during radiation. While the swelling has disappeared, it is still very painful (and numb) and I cant even imagine playing volleyball or running now (almost 10 months post surgery) :) Again - interested to hear if anyone else has gone through. My physio tells me that I just need to wait and it will settle down, but the whole recovery period seems to be taking so long to get any sense of normality! unfortunately that thensometimes impacts on me on thinking positively.....

I havent really known anyone else who has gone through it, so havent spoken with others yet...

Thank you - all you wonderful women!
louiseg
Member
12 years ago
Hi Debbiana,

I've now been on Tamoxifen for just over 3 yrs. The only side effects that I get are wicked hot flushes. Most people seem to tolerate taking Tamoxifen very well so I wouldn't be overly concerned until your body has had time to work out how it is going to deal with it! I've never had anxiety so can't help you there.

Good luck!

Louise :)
Debbiana
Member
12 years ago
Hi This is my first time writing - just signed up this morning. I was diagnosed with early stage breast cancer in December 2013. I've just completed 7 weeks of radiation and have started taking Tamoxifen. I've had a Mirena IUD for the last 8 years to help with terrible pain caused by endometriosis which has been great. Sadly, that has to come out this Friday on recommendation from my Oncologist. I'm 53 years old and not really sure where I would be at naturally with menopause given the IUD has masked symptoms. I'm wondering how soon after starting Tamoxifen I might experience any side effects? I'm hoping I am one of the lucky ones!! I've only been taking it for four days and already I feel anxious - the kind of anxiety that sits in your chest and makes you feel sick. Wondering if this is just general anxiety from the whole ordeal or if it could be related to the drug??? Not due to see my Oncologist for another six weeks.
Debbiana
Member
12 years ago
Hi This is my first time writing - just signed up this morning. I was diagnosed with early stage breast cancer in December 2013. I've just completed 7 weeks of radiation and have started taking Tamoxifen. I've had a Mirena IUD for the last 8 years to help with terrible pain caused by endometriosis which has been great. Sadly, that has to come out this Friday on recommendation from my Oncologist. I'm 53 years old and not really sure where I would be at naturally with menopause given the IUD has masked symptoms. I'm wondering how soon after starting Tamoxifen I might experience any side effects? I'm hoping I am one of the lucky ones!! I've only been taking it for four days and already I feel anxious - the kind of anxiety that sits in your chest and makes you feel sick. Wondering if this is just general anxiety from the whole ordeal or if it could be related to the drug??? Not due to see my Oncologist for another six weeks.
jules_jp
Member
12 years ago
Hi Annie, firstly congratulations on completing treatment. So sorry to hear about your recent stint in hospital. You are right chemo and radiation do take a toll on your body and it doesn't help to have other additional health issues at the same time. These things do take time and you will notice as time goes by, your energy returning. It also helps to eat right, moderate exercise and rest. Go easy on yourself (you have been through so much) and I recommend the Cancer Council Living Well After Cancer workshops for yourself and your carer. Take care
Annieh
Member
12 years ago
Hi, Well I was to start on Tamoxifen in Jan this year after finishing Chemo and Radiation Treatment. But you would not believe it after only 2 days on Tamoxifen I was rushed to hospital with Pancreatitis.1 week in hosp. I had this pain for like 4 weeks and thought I had pulled a stomach muscle. Oncologist and Specialist agreed that only short time on Tamoxifen is not related but had to go off it until further notice. They don't know cause (and think maybe Chemo might have done something but who knows). Decided not to take Gall Bladder at this stage etiher and No Gall Stones. So now 5 weeks on and going ok, but energy was taken completely. Exercising (swimming, yoga and walks) now which keeps me sain. So not seeing Oncologist till May to see what they will do next re: Hormone treatment. Sweats - yes getting worse and advised to try Acupuncture. What a journey and have a long way to go but that is life. Planning to do 15k swim for BC in June to fundraise for well deserved cause.
jules_jp
Member
12 years ago
For privacy reasons, this post has been deleted.
louiseg
Member
12 years ago
Just a quick update everyone. I have now been on Tamoxifen for 3 years (wow, that's gone fast!!) and I am still going well. I am playing beach volleyball each week and try to go for 3 runs each week too. As I previously mentioned, the only side affect that I get from the Tamoxifen is night sweats and hot flushes (although these could be due to the chemo and I may have had them regardless of the Tamoxifen from what i have read).

Stay healthy and think positive...it makes such a difference to your quality of life :)
jules_jp
Member
12 years ago
Hi Annie, congrats on completing treatment. all the best with talking to your oncologist. Remember to write down a list of any queries you have. I know of women who had the cough which they believed was caused by radiation as it can penetrate near the lungs and throat area depending on your local spots. Main things is to do what's best for you.

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