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No More Tamoxifen! A curse and a gift...

Posted by Emilienne Rebel on

Day 1 No Tamoxifen! Well it would appear that I'm really closing many doors on my cancer journey this month. Finishing off my breast reconstruction and now being discharged from my Oncologist's care and stopping Tamoxifen after 10 years of taking it! Its now I realise its been a gift and curse.

Whilst its a pretty nasty drug to take to prevent Breast Cancer, it carries risks of ovarian cancer and other unpleasant side effects. I've now come full circle and am really worried about coming off the drug and how it will effect my body, my mood, my skin, my weight... and of course am I now at risk of further breast cancer or secondary cancers? The risk is real. Have I had my borrowed time? Have I made the most of it? What do I want from my life now? I guess its been a bit of a safety blanket these past 10 years, knowing I was doing all possible to fight this disease and that I still had the 'comfort' (yes I wrote comfort) of a yearly visit to see my Oncologist. 

I can also see the hopeful side too. More energy? Less weight-gain? No more headaches and not so anxious? Finally Cancer behind me?

I remember the day I swallowed my very first pill... and I don't remember much! I struggled to get it down knowing that it would have effects on me, but not sure what they would be (everyone reacts differently of course). I suffered greatly from severe fatigue (for the whole time I've been taking the drug) and also more physical side effects of leg and joint pain (this eased after a couple of years although I still get hand joint pain and stiffness). My daughters had their bedroom on the third floor of our then large house and I remember it being a real struggle to get up them and being in agony. I also suffered from migraines and endless stomach problems (including vomiting blood and constant nausea)  My anxiety has also been great in the past ten years, and I'm sure in some way due to the tamoxifen and triggered by the actions and words of certain 'people' in my life.

I've googled all I can think of in my quest to find out what lies ahead and if anyone can help searching for 'ending tamoxifen' and 'tamoxifen withdrawal', 'stopping tamoxifen' and 'stopping tamoxifen after 10 years' and there are a couple of chat threads with some lovely ladies on them sharing their experience, but otherwise not a lot to find. 

So I will share my experiences in this blog and any effects I think noteworthy so that someone might read them one day and it be of some support. 

Blogging wasn't a thing really back then... gosh that makes me sound really old... I wish I'd had Instagram or Facebook back then to track and diary my journey. I've forgotten so much of it and there are only a couple of photos which I took myself on the computer... selfies weren't even a thing! Okay, I'm officially old and on that note I'm ending this blog post and looking forward to writing about all the energy I'm going to start having from today and how young I will look :) 

P.S for anyone reading this blog that is currently taking Tamoxifen or similar drugs, I realised after about 6 years that sticking to one particular brand of the drug helps reduce the side effects. This must be in part due to the coatings if the active ingredients are the same... nevertheless it really helped me. 

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  • Hello Lucia, thank you for your comment. Its been a few years now and my memory is definitely scarred from chemotherapy… I still have chemo brain.
    I do think taking something like Tamoxifen will all its side effects still gives you that sense that you are doing something proactive, so it’s been hard doing ‘nothing’. Sometimes I wish I could go back on it, just for ‘peace of mind’.
    I have endometriosis as a result of taking the drug (I have no way of knowing if its because I took it for 10 years, but it started towards the end of my term). I do get body aches still also and restless leg, but rarely and I couldn’t say if it was as a result of Tamoxifen so far after. I am suffering from hormonal acne on my face and neck since about a year after finishing treatment. As with the pain from endometriosis no medication is available to me because they are based on hormones. When the pain eventually gets too much to bear, I will need an operation. The acne (which I’m assured looks worse to me) on top of hair greying fast (it grew back browner/darker, but with grey! after chemo) seems a little unfair… but, as we know growing old is a privilege denied so many, so its all not important in the grand scheme of things.
    To answer more directly. I just stopped taking it, no weaning. It’s been a few years now and I don’t think about it. I would say the side effects (apart from above) probably eased 9-12 months after finishing the 10 year course. I hope that helps and you are not suffering too much. Go easy on yourself xx

    Emilienne Rebel on
  • Hi Emily was great to find the blog but not sure if you posted an update after some time as to how you felt. I’m aware I’m likely to have a rough ride but wondered how did you stop, did you wean down or go cold turkey? Also how long did you suffer after and have you recovered now? Many thanks Lucia

    Lucia Hall on
  • Hi Deb, thank you for your comment. Please let me if I can answer any specific questions. It’s been a few years now since I stopped taking Tamoxifen. It’s a bit like anything else, you forget it was ever a part of your life.
    I have less headaches. My hair is ok and I’m trialling some hair growth serums for my eyebrows and lashes to help them grow. I still have my periods, but Tamoxifen left me with ‘untreatable’ endometriosis which is getting worse. I can’t have drugs as they are hormone based… I could have surgery, but I will only do that as last resort. Kindest regards, Emilienne

    Emilienne Rebel on
  • Hi, I note the date was 2018 I am wondering how things went for you post tamoxifen?

    Deb on
  • Thank you Emily, this is wonderful.i’m on year 8 of Tamoxifen & cannot wait to the end of my 10 years. I’ll be most interested in reading your blog as other people I know only had it for five years. I do hope you have a positive experience & continue with good health & lots of fun xxx

    Cathy Boardman on

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