Tamoxifen side effects?

Hello Louise and everyone else in here. After reading all of these, it seems I maybe the only person that has been on Tamoxifen for nearly 4 years. I rarely get side affects and to be honest I get maybe 2 side effects.

1. Definatly the legs get sore like bricks but a nice massage once a week normally cures that it hurts bad but some ibrufen and panadeine forte usually help at night.

2. Moodiness. Still.

I had a full hysterectomy so have been going through for the last 3 years menopause cold Turkey. I was 39 when I got this stupid disease and cross my fingers that I never have to go through it again. But chin up, look how far we have all come and the help we provide each other. I love my life, I see everything different now and rarely take anything for granted. Hey we got hit by cancer and got the chance to live. People wake up start to drive to work and get killed. You don't know whats around the corner so enjoy love and live.

KISSES AND HUGS TO YOU ALL.

elisa

Hi, I forgot to mention, it is also common for women of child bearing age to get ovarian benign cysts. I had two large ones develop which went away during and after coming off tamoxifen. Jules

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.

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

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

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?