Tamoxifen side effects?

Well how ironic to read about RSL and leg cramps etc.  For the last few weeks I have had the odd cramp in my legs at night which have woken me up and have been quite painful.  The last few nights have been the worse.  I started on tamoxifen in March and never realised this could be a side-effect.  I was planning on discussing these cramps with my GP on my next visit.  I'm also experiencing cramps in my hands too.

Also, has anyone heard of  "Telomerase"?  A friend is recommending it to me but all I have to go on is a website and some information that was sent.

Well how ironic to read about RSL and leg cramps etc.  For the last few weeks I have had the odd cramp in my legs at night which have woken me up and have been quite painful.  The last few nights have been the worse.  I started on tamoxifen in March and never realised this could be a side-effect.  I was planning on discussing these cramps with my GP on my next visit.  I'm also experiencing cramps in my hands too.

Also, has anyone heard of  "Telomerase"?  A friend is recommending it to me but all I have to go on is a website and some information that was sent.

Hi Suz, I am really sorry that you are suffering so much on tamoxifen. It just sucks that something that helps keep us alive can make life so unpleasant. I haven't started it yet. I'm due to go on it in about 6 weeks when I finish RT so I've been reading about side effects and so on. Just wondering whether you've come across much research on I3C which has been mentioned by a couple of women here. It is a substance found in cruciferous veg like broccoli, kale and cauliflower. I have just started taking a small dose myself. (My oncologist hadn't heard of it and said it was up to me  if I wanted to take it.)

 I've read some research - uni of Arizona has just started a study testing it in conjuncition with tamoxifen. They think the two could work better than tamoxifen alone. But even on its own I3C shows promise of preventing breast cancer recurrance. It's by no means proven yet but my thoughts are that if tamoxifen gets too unbearable I will stop it and increase my dose of I3C and concentrate (even harder) on eating very healthily, exercising etc. 

I certainly don't want to encourage you to stop taking a potentially life saving medication but if you do stop I'm just suggesting that you might like to find out some more about I3C as it may provide some protection from the cancer recurring.  Good luck Suz.

Janet.

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