Forum Discussion
louiseg
16 years agoMember
Tamoxifen side effects?
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 :)
109 Replies
Hmmm, it's a bit hard to know what will happen on tamoxifen until I try it I suppose. But thanks ladies for your comments, I really appreciate the information. I will keep in mind the evening primrose oil & vit E too.
The more I read about this whole breast cancer recovery business and preventing recurrence, the more crucial it appears to adopt a scupulously healthy lifestyle. Not that I was a total slob before but there was/is room for improvements. Although I totally agree that life must include treats now and then.
Also, in the long run - much as it pains me to say it - I guess it's better to be a couple of kilos heavier and alive on tamoxifen than slender and dying from secondary breast cancer.
Good luck everyone in staying healthy and happy. Janet.
- DeeayMemberYes, Janet I have put on weight. I do partly blame Tamoxifen as it does make your body store more fat because Oestrogen production is blocked (women also store Oestrogen in their fat). I heard this explanation from Dr Fran Boyle (Oncologist) at a lecture. But! Weight gain is also attributed to menopause. I have developed a second stomach above my navel- midriff fat! Also, I blame my 'treats'. I still enjoy chocolate (but have switched to dark) and the odd glass of wine and cheesecake. I agree with Louise. What's the point of living if you can't enjoy it! so no, I can't blame Tamoxifen entirely-but it certainly doesn't help! Might try the evening primrose oil though. Sounds good. Cheers ladies, Diane
- DeeayMemberYes, Janet I have put on weight. I do partly blame Tamoxifen as it does make your body store more fat because Oestrogen production is blocked (women also store Oestrogen in their fat). I heard this explanation from Dr Fran Boyle (Oncologist) at a lecture. But! Weight gain is also attributed to menopause. I have developed a second stomach above my navel- midriff fat! Also, I blame my 'treats'. I still enjoy chocolate (but have switched to dark) and the odd glass of wine and cheesecake. I agree with Louise. What's the point of living if you can't enjoy it! so no, I can't blame Tamoxifen entirely-but it certainly doesn't help! Might try the evening primrose oil though. Sounds good. Cheers ladies, Diane
- jules_jpMember
Hello ladies, Janet, congratulations on completing chemo...!It was good to read some of the comments and trials about what works for you. In hindsight, I would have tried primrose oil or vitaman E. We all are different and have experienced the rollercoaster of BC treatment. After about 2 years of tamoxifen I had some early signs of fatty liver, which wasn't there before. I was 37 at the time and have come off famoxifen to start a family. For me, the mains side effects were bloating, puffiness in joints and dryness in the skin esp. sensitive areas. A few months before coming off tamoxifen, I too started jogging and am doing lite n easy and have lost 7kgs. I believe that tamoxifen interfered with my metabolism. A friend of mine has been on tamoxifen for 7 years and continues to tolerate it (with minimal side effects) for as long as possible to prevent recurrence. Each woman has to experiment (as you do) with what's works for you and your body. Worst case scenario, you can try and reduce the dose from 20mg to 10mg or switch. I am grateful to have had the treatment and the choices that we have now days. Wishing you all the best with your recovery and survival :-)
stay strong jules
- jules_jpMember
Hi Ann,Sorry to hear your news, side effects do happen and affect others more than some. There was a study done that showed tamoxifen may not be as effective when taken with some anti-depressants. So you might want to check with your oncologist (if you haven't already). Hope you are on the up in the roller coaster that is BC. stay strong jules
- louisegMember
Hi Everyone,
Well, I thought it was time to re-enter the conversation as I originally started this back in 2010 before I had experienced Tamoxifen for myself. There seems to be a lot of worry out there which hopefully I can help a little bit with.
I have now been on Tamoxifen for about 18mths and can honestly say that I feel great! Initially I had some hot flushes but I'm not sure if these were residual from the chemo or whether it was the Tamoxifen that caused them. I spoke to my oncologist who recommended trying Evening Primrose Oil and Vitamin E - both of which I now take daily and I haven't had any severe hot flushes for a while now (the odd small one now and then which I can cope with).
I have lost 2 kgs and kept that off for a while, so the weight gain doesn't seem to be Tamoxifen linked....sorry girls! I haven't really changed my diet at all.....probably should do but, hey, you only live once and I'm here for a good time :)
The only thing that I have changed about the way that I am living, and it's something that I never thought that I would hear myself say!!, is that I have taken up running! Yes, me who said that running was against my religion and not something that I would EVER do is now running about 7kms twice each week! I have done my first fun run (although I did walk quite a bit of that!) and I am doing the Perth City to Surf 12km run in a couple of weeks.
Live life to the full, ladies! We are survivors and every day is precious.
Good luck!
Louise x
Thanks Deeay. That's pretty much what I had in mind - lots of fruit & veg, freshly squeezed juices, as little as possible of processed foods & alcohol etc. (with an occasional treat). I'm going to have to make-over my pantry when I get a bit of energy back!
So just to clarify, you said you feel healthy but do you feel you are suffering any side-effects at all from Tamoxifen? And do you think you have gained weight while on it and because of it? Or is your weight just a little more than you'd like through enjoying lots of healthy foods?
Thanks Deeay. That's pretty much what I had in mind - lots of fruit & veg, freshly squeezed juices, as little as possible of processed foods & alcohol etc. (with an occasional treat). I'm going to have to make-over my pantry when I get a bit of energy back!
So just to clarify, you said you feel healthy but do you feel you are suffering any side-effects at all from Tamoxifen? And do you think you have gained weight while on it and because of it? Or is your weight just a little more than you'd like through enjoying lots of healthy foods?
- DeeayMemberI had one of these before I took Tamoxifen! Have been on Tamoxifen for about 9 months now and find it so much better than Arimidex for joint pain and hot flushes! But I also follow a better diet now to improve my liver function. Can't hurt can it! I eat organic fruit and veg and anything else organic I can find at Woolworths. (they have an excellent Macro range) I also avoid where I can, fatty foods, processed foods and food additives. I've cut back red meat to about 1x week only and eat heaps more veg and drink fresh fruit and veg juices I make. I figure all of this can take a load off the liver and kidneys. I feel very healthy but haven't lost weight-too much of the good stuff! Every now and then I do a herbal liver detox with a powder you mix with water each day for a month. I'm a bit wary of lots of supplements and fad diets as my GP is so against anything but a good diet if possible. PS If I go out for a meal I make an exception, choose wisely but still have the chips or cheesecake as a treat. :)
- DeeayMemberI had one of these before I took Tamoxifen! Have been on Tamoxifen for about 9 months now and find it so much better than Arimidex for joint pain and hot flushes! But I also follow a better diet now to improve my liver function. Can't hurt can it! I eat organic fruit and veg and anything else organic I can find at Woolworths. (they have an excellent Macro range) I also avoid where I can, fatty foods, processed foods and food additives. I've cut back red meat to about 1x week only and eat heaps more veg and drink fresh fruit and veg juices I make. I figure all of this can take a load off the liver and kidneys. I feel very healthy but haven't lost weight-too much of the good stuff! Every now and then I do a herbal liver detox with a powder you mix with water each day for a month. I'm a bit wary of lots of supplements and fad diets as my GP is so against anything but a good diet if possible. PS If I go out for a meal I make an exception, choose wisely but still have the chips or cheesecake as a treat. :)