I’m going to be starting Tamoxifen after my Surgery. I am hearing and reading so many horrible stories about it and it’s making me so miserable thinking about my future I’m 43 and have a job where I need to be alert and I also play a lot of Sports.
Has anyone got anything positive to say? Has anyone actually got on with the drug without any side effects?
I would love to hear from you
I also really enjoy Red Wine not to the point I drink too much but can I still have a drink?
I am so desperate to have my life back being diagnosed with Breast Cancer is Fu*@ing S*#t I’m finding it all so emotionally exhausting I’m so depressed with it all.
Hi @kat-jack . No advice but I’m about to start taking it too and I’m really nervous. There aren’t many positive words about it, but it just seems a necessary evil to keep our cancer from returning. I am 46 and I am in perimenopause but because I still have periods, tamoxifen seems the gold standard. I was told 10 years! I’d love to hear positive stories. I don’t want cancer to return, so I will take my tablets, but I am scared.
Hopefully we will both be ok. Sending positive vibes for your surgery - mine was 2 weeks ago. Good luck and let us know how it goes. X
I am 43 too. I share your pain on the red wine. From what I have read, the odd glass is fine but NICE guidelines are 5 units per week if you have had hormone positive cancer…which is probably what I would normally have on a Friday night before…I just shouldn’t have it on the other nights too if I follow that. I have barely had any since my diagnosis in September but that is just fear. I think in reality the risk increase from the odd glass is very limited and frankly life is too short. Everything in moderation! As for tamoxifen, well, annoyingly alcohol is meant to make side effects worse but again everyone is different. I have only been on it a couple of months and I do have some waterworks issues (going a bit more and bladder seems more sensitive) but otherwise it has been fine and definitely tolerable. I have been having the RelonChem brand. Good luck with it all. Xxx
Hi ladies.
I wish you all high tolerance with tamoxifen.
I am 49 and just one month on it, so far all OK.
Some days I had a very mild nausea, not daily. I do have some bloating, but prior to BC I was having some digestive issues and drank chamomile twice a day to alleviate.
They say chamomile would interfere with tamoxifen, so I quit . Also no turmeric, flaxseed, grapefruit, tangerines, oranges and a few other things.
Check up with ginecologyst is in two months time and next blood test early May, so I will be able to gather more info on SE by then.
Xx
41 year old here. I was absolutely terrified of starting tamoxifen. I began taking it in June and bizarrely it made me feel really good! Loads of energy and libido through the roof! I was really surprised and delighted.
After six weeks I started taking zoladex and now have some menopausal symptoms - the worst of it being the nightsweats but honestly so far it’s no where near as bad as I imagined. Libido has calmed down. Hard to know if my sweats are from the tamoxifen or the zoladex or both but either way, I’m managing my symptoms ok and mostly feel normal (just a bit sleep deprived!).
Exercise has been really important for me I think. It’s helping me feel strong physically and mentally.
I hope that you find the same - that the fear is worse than the reality. I also drink wine and I don’t intend to give up booze.
We have to live and if a little glass of something makes you feel relaxed - that’s got to be a good thing. We’ve been through enough! X
Hi there. That’s the thing isn’t it, we only read about the horror stories and bad experiences taking Tamoxifen. Do remember that a lot of us tolerate it pretty well. Yes there are some annoying side affects, stiff joints, thinning hair, dry skin and insomnia but a lot of the time things can improve by just changing brand. I took RelonChem brand for 2 years and was pretty scared but it was fine. Things generally settle down after about 6 months anyway as you get used to it. It’s very important to take it every day.
I loved my wine too but made a conscious choice to stop drinking. It actually wasn’t difficult and I found I didn’t miss it. Alcohol is a big risk factor for BC you’re doing yourself a big favour if you stop. I have had the odd glass on a birthday or a celebration but didn’t enjoy it so much because it gave me terrible flushing and sweats. I switched to non alcoholic gin and tonic, lots of lemon and ice, it’s really good.
Really good to hear that some of you havent had the horrorific side effects. Thank you! I was sad to hear you can’t eat oranges though! Or tumeric? What if I go for a curry? X
I’ve been taking Tamoxifen for around two and half years now and I don’t really feel like I’ve suffered any nasty side effects
I too have found that since being on Tamoxifen my libido has increased
I’ve had a few night flushes which have calmed down, mostly manageable by treating myself to some cooler pyjamas
I think possibly that my nails are suffering (they were never particularly strong but feel like they’ve become quite a bit weaker in the past few months)
Regarding alcohol when I first started I found my taste for it changed, I’d enjoy one glass of wine but then it just didn’t taste right and I didn’t enjoy the next one: reducing alcohol intake is a good idea so I saw this as a good thing to moderate how much I drank.
It is very much the case you are more likely to hear stories from people who have problems than those that don’t, ultimately you have a choice to take it or not, just because you start taking it doesn’t mean you can’t stop taking it if you decide to
Admittedly I’m a little older than some of you ladies (50 when I started) and I’d had some menopause symptoms already so I really don’t know what were Tamoxifen side effects and what was menopause symptoms I’d be experiencing anyway
I’ve never heard of advice of avoiding any foods on Tamoxifen, the amount of anything you eat is so insignificant it’s unlikely to have any adverse effects.
There was once advice to avoid grapefruit if you had high blood pressure and whilst only eating grapefruit is probably not advisable for many reasons, the advice now is you don’t have to avoid it completely
Dr Liz O’Riordan has done several reels and videos about diet after a breast cancer diagnosis
As it was mentioned on this thread, it sounds right that the amount of the intake might be very low and cause no trouble.
There is some info here
Maybe if in doubt it is better to ask someone from the BC team?
Hello. I have been on Tamoxofen since mid December and tolerating it really well with hardly any side effects now! . I am 43 and started on Letrozole and zoladax with awful side effects so changed to tamoxifen and much happier now. I asked my Oncologist about drink or foods to avoid and he wasn’t concerned… I do have some red wine at the weekend still. You just don’t drink too much. I wish you all the best x
Hi Kat…I have been on Tamoxifen for over 2 years and can tell you my experience. I started at 5 mg and gradually worked my way up to 20 mg per day…at that dosage I was experiencing hot flashes which I could live with but also started to experience a mood swing that I can only describe as a sort of depressed feeling ( I have never been depressed). I was not willing to live with that side effect so I talked to my oncologist…their initial solution was to offer me antidepressants which I refused. I am not going to take a medication that is only going to cause me more side effects to treat a side effect from another medication…My Dr then suggested I lower my dosage to 15 mg per day which alleviated my mood swings. I switched oncologists when I moved to South Carolina and he has me now on only 5 mg of Tamoxifen and I can stop taking it after 3 years…I have no side effects anymore on this dosage and there are studies that have shown that 5 mg for 3 years has the same effect on reducing a reoccurrence as 20 mg for 5 years. My advice would be to advocate for yourself and always weigh the benefits of being on this drug to the side effects that you are willing to live with. Please let me know if you have any questions.
I’ve been on Tamoxifen since November and the only side effect I’ve really noticed has been hot flushes and night sweats. They’re not pleasant and have meant I’ve been having problems sleeping, but when I was reading all the horror stories, the actuality its half as bad. I also prefer the RelonChem brand but am having real difficulties in getting hold of them.
hi
Everyone’s body is unique and so responses to any drug varies. I have been on Tamoxifen for five years following four years on Letrozole and have only had hot flushes, and those not too bad. No other side effects. The problem is that on this forum people only tend to say when they have side effects to get help and support. They don’t have any reason to report no of vefry few kside effects.
Hi, I have been taking tamoxifen since January 2023. Its only the last couple of months that I have started hot flushes. These happen during day and night.
With reference to sports, tamoxifen has not stopped me doing anything, its the surgery and chemotherapy that interfered with that part of my life. The occasional drink is fine . Hope everything goes well.
Hi, I’m waiting for my oncologist appointment and have been told I’ll most likely be put on Tamoxifen as I’m pre-menopausal. I’m interested in @janeb1’s observations about dosage levels. How does it work in the UK please? Is it a standard dose (ie 20mg) or is it flexible in this country too? What dosage have others in the uk started on? Thanks x
I had zero symptoms bar a bit of thinning hair. I was on Mylan arcana. Sometimes I wonder are some symptoms as a result of perimenopause.
Try and approach it with a positive mindset and don’t go looking for symptoms as your brain is very powerful and you have been through a lot. It takes a week or two for the body to adjust so give yourself time to adjust!
If you are at the end of your treatment it’s such a positive moment, unlike me who is waiting for news of a possible recurrence.
I am postmenopausal and was taking Letrozole but had to stop due to the side effects. Was changed to Tamoxifen but still not started it yet a bit apprehensive. GP I work for said Tamoxifen is the better drug, will eventually I will work up to starting it. I’m 62 but would take a different approach if I was younger like you lovely ladies. Take care all
. I am 43 and started on Letrozole and zoladax with awful side effects so changed to tamoxifen and much happier now. I asked my Oncologist about drink or foods to avoid and he wasn’t concerned… I do have some red wine at the weekend still. You just don’t drink too much. I wish you all the best x