Has anyone stopped taking tamoxofin?

[MissRen]

Hi there. I've been on tamoxofin for almost 2 years of the 5 that has been prescribed and I'm thinking of stopping. Has anyone stopped taking tamoxfin before the pescribed and date? If so,how are you?

[Allicat]

Why are you thinking of stopping? Have you talked to your doctors about it?

[MissRen]

Yes i am and I have spoken to 2 oncologists about it. There is no data available on the decrease or increase of reoccurence being on it for 2 years purely because no one has researched this, it's only been done at the 5 year mark. So I thought I'd put it out there and ask on this site hoping the is someone who can share their experience.

[MissRen]

I'm thinking of stopping it to concieve.

[Allicat]

Sorry, I can't help as I haven't even started on tamoxifen yet. That's surprising there is no data - I would have assumed everything like that would have been studied. Best wishes for whatever you decide to do.

[jules_jp]

Hi Miss Ren, how are you? Its been a long time. I stopped tamoxifen in second half of 2010. Be prepared for the surge in hormones again for eg. PMS etc! Having said that, the only good thing about tamoxifen was that it kept me regular and calm. I am glad to be off tamoxifen and back to a new/old me. I've lost some of the weight and bloating that came with it. You are right, there is very little research done on this. The risks were discussed at length with my husband and I - for eg. if cancer were to come back and possibility of leaving a child with one parent. We too are trying to conceive. There is a possibility that I may return onto tamoxifen (maybe a low dose) post pregnancy. That's all for now. I am 39 and have been told by my gyno/obstetrician that if we considered IVF that they use different hormones to stimulate growth to collect the eggs. Also the chance of recurrence in that one month would be minimal, so that IVF, if it were a last resort, will still be a safe option. In 2010, my oncologist referred me for a bone scan and MRI of head, chest and abdomen, plus bloods to make sure everything was ok before coming off tamoxifen. We are still trying naturally - need to allow at least 12 months. I wish you all the best.

[Nella28]

Hi. I have just started my radiation therapy and it is for the next 6 weeks. Then I have to go on tamoxifen for 10 years!? Anyways, all these posts are from 2011, I would appreciate any updates please. And any advice if you are on tamoxifen in the last few months. Thanks

[Nella28]

Hi. I have just started my radiation therapy and it is for the next 6 weeks. Then I have to go on tamoxifen for 10 years!? Anyways, all these posts are from 2011, I would appreciate any updates please. And any advice if you are on tamoxifen in the last few months. Thanks

[jules_jp]

Hi Nella, so sorry you have to be here. Good luck with radiation. Did you get your tattoo markers? Tamoxifen was originally prescribed for 5 years, but recent studies show that if you can tolerate it, the longer the better. Prevention is better. Younger women are likely to quit earlier but with that came some risks of recurrence. Tamoxifen blocks hormonal or any stray cancer cells from binding, so it was recommended that a longer period is better. I am meant to go back onto tamoxifen post babies. Hugs

[Allicat]

Hi Nella, I'm still on Tamoxifen after 5 and a half years. Originally they'd said 5 years and then they decided 10 would be even better. When I started I had hot flushes which were really annoying but after a while they settled down and now I am not aware of any side effects. I have asked about stopping Tamoxifen just because on an emotional level I would prefer to not be taking drugs any more but the doctors recommend that I keep taking it and I also feel like I need to do everything I can to prevent cancer from coming back so I'm still taking it. Good luck with your radiation