Tamoxifen & Side Effects: I have been... - Breast Cancer Haven

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Tamoxifen & Side Effects

I have been taking tamoxifen since the beginning of January, no side effects for first 3 weeks, thought I’d got away with it, but sadly not. I’m not sleeping very well due to hot flushes which triggers anxiety (all 3 have a knock on effect with each other....catch 22!!). The severity some days feels like I’m going to combust 🥵

I’ve heard that changing brands can help, has anyone had good/bad experiences of this they can share please? I’m currently taking 20mg pd of the brand Wockhardt.

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Hi Titch22. I have been taking tamoxifen for 3 years now and the brands definitely seem to make a difference, in facet Wockhardt it the worst one for me and i even have it written on my notes at the pharmacy that I mustn’t have it. Hope that helps. All the best.

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Thanks for your reply, can I ask what brand you switched to please?

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Hi Titch22,

I did not have a very good experience at all. My husband saw the warning sides of very dark things that I was saying and didn't realise it.

I hope you have someone to help you, not monitor but know the signs to look for dark thoughts and responses. Such as 'I have no purpose being here' That was my big one.

The first day I stopped them, I instantly felt a vail come off of me.

Sorry, scary thoughts but very honest.

Please take care

🌻🌼☀️

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100% agree I had my ovaries out now on anastrazole the bone pain is horrendous but at least I have my mind.

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Oh I feel for you with bone pain! I'm having that now it's horrible. Can you describe the pain?

Completely off the subject but... I had a bilateral mastectomy with DEIP Flap reconstruction and they've just found a metal spherical shaped object in my abdomen right where my scar is. Xray shows it's 20mm in diameter. This is 10 years ago, you feel it will never stop. Is this what has caused my poor health?

Be as well as you can be today!

🌻🌞🌼🧚‍♀️

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I would describe the day to day pain like bone pain when you have the flu sore aching and heavy. When it’s really bad I can’t even stand anyone to touch me as it’s a sharp pain then. I have also been diagnosed with osteoarthritis. Good luck x

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Yes I have both Osteoarthritis and Osteoporosis. I know that feeling. Mine legs feel like they are tree trunks. My dog hasn't been out in ages so I took him for a stroll, very slow and took many sit down breaks. My feet feel like cracking.

Do they give you anything for bone pain? That actually works? For me usually my muscle relaxants seem to work the best. Heat helps too. Does that help you? I get in a shallow bath with my top on and just soak my legs.

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No meds they have sent me for physio which I am going to. I use tiger bad that helps me. Deep heat doesn’t agree with my skin. I take 2 cocodsmol before bed. My poor dog has arthritis so he can’t even make a walk around the block. But I walk myself everyday minimum of 10,000 steps and it helps me. The longer I sit the worse I get x

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Hi there unfortunately my side effects where the exact same as yours, I eventually came off the drug all together as I wasn’t having any quality of life.. couldn’t go anywhere or do anything with my hair clapped into my head and water running off my face and neck, hopefully you get it sorted Good luck x

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Yeah, I have seen others mention they notice a difference, I personally don’t. I sometimes get a mix of two brands from my pharmacy and they always assure me it’s exactly the same thing (and I never asked!). Seems to be a thing for patients, and health care professionals are aware of it. Maybe a placebo effect?

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I had horrible hot flushes and night sweats on tamoxifen. Changing brands and taking them at a different time of day helped immensely. (Wockhardt was the brand that I couldn't tolerate).

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Yes I’m hearing this a lot about Wockhardt. Think I might switch & see how things go. Thanks for your reply.

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Hi Titch22,

Fortunately I have not got the hot flushes but have many other side effects like chronic fatigue, joint pain and really horrible vivid dreams .... I tried about 4 different brands and found the best one to be ‘Mylan’ .... I think it might be hard to get but my chemist orders it in for me ....

Very best regards ......

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I got very tired to begin with, now the tiredness comes from not sleeping well, I get about 4 hours a night & even that is restless. Think I will try switching brands, I’ve just got to try & persuade my pharmacy to order a different one. Thanks for your reply..

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Tich, I have been taking Tamoxifen for about 6 wks. I am also having hot flushes, night sweats which interrupt my sleep. I have no idea if its because of the drug, I had to stop taking my HRT before lumpectomy, also have mirena coil removed so my hormones are all over the place, double whammy! The make of my Tamox is Mylan, I take it in the morning...Have you spoken to yr Breast care team or oncologist? There are drugs which can help these symptoms, Venlafaxine etc which are SSRIs( anti depressants) which can be effective in improving fatigue, mental health,, sleep disturbance and reduction in hot flushes.I dont want to go down that route as they also could have they could also have side effects. I was also told about Cognitive Behaviour Therapy, suggested a a CBT workbook by Sheryl Green, also " Managing hot flushes and night sweats, a cb approach to menopause" by Myra Hunter and Melanie Smith... maybe worth a try? I am off work at the mo, started radio yday,( one down, nineteen to go!). I am off work at mo, started radio yday and I do worry about coping when I go back to work fulltime... I was also told no caffeine or alchohol helps, loose cotton clothing/ bedding/ , a cool bedroom, no lie ins or naps after 3pm, limit light early in evening...hope this helps, big hugs xx

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Hi Titch22.

I started out on Wockhardt but it made me feel very low. Did a fair bit of research online and asked to switch to Teva as it was recommended by quite a few women. I’ve been on it now for nearly 2 years without too many issues, however I do get the aching bones and heavy legs from time to time and a few hot sweats. Thank Let us know how you get on.

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Sticking to Sandoz for tamoxifin has my side effects under control. I can't remember which brand it was, but once when I got a different brand from the pharmacy, my hot flushes became so much more frequent and worse.

I still have them - and my sleep is interrupted but usually once every night. And once early in the morning. Sometimes, I can sleep through them as well. I've been on Tamoxifin for 2.5 years now.

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Sorry to hear you’re going through a tough time. I had breast cancer 3 and a half years ago and after a great deal of research I decided not to take either tamoxifen or aromatase (drug for post menopausal)....they wanted me to take a combination of both for 10 years!

Instead I decided to go down the diet and calcium D-glucarate route. I lost weight and and now have a very healthy diet (mainly veg and organic). Research calcium D- glucarate....there’s an interesting piece carried out at Harvard. It cleanses the liver and allows it to function well, which means it liver will eliminate excess oestrogen from the body.

However, this might only be useful for post menopausal women......do your research and potentially speak to Sarah lumley (nutritionaiat at the haven, Fulham)

Good luck and take care

Sarah

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This is really interesting Sarah! I want to avoid the aroma tase this time as only too aware of side effects from 2 previous attempts ( yes bc 3x now!!). Could you send me a Llion to the Harvard article please fiona@fionajwright.com ? Many many thanks xx

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Hi Totch22 oh my days Wockhardt is the worst!!

I refuse that supplier.

My go has kindly annotated my repeat prescription for tamoxifen with “Pleas do not provide Wockhardt or CP Pharmaceuticals manufactured tamoxifen. Please only supply Teva, Genesis, Relonchem, Actavis, Alphapharma manufactured tamoxifen” or something like that.

I got those names from a lengthy conversation with my local pharmacist regarding this very issue. She explained that the active ingredient tamoxifen doesn’t change but each manufacturer will add different fillers which are what cause the side effects. My BCN confirmed this.

Then the pharmacy will order from whichever supplier is cheapest at that time. My pharmacist said they receive £1.70 back from the govt for each mo this supply of tamoxifen they provide. So when Wockhardt are selling it at £1 then they will order it from them......

Well I was shocked 😱at her reasoning for supporting poor / awful quality of life in the name of profit! 😡🤬

My go also said she can send the prescription online to any chemist in the uk! So I am quite willing to ring around to find an alternative chemist should I need to and my local one can lose the profit. Especially as I am due to take it for another 8 1/2 Years.

You also have the right to refuse tamoxifen by anyone you can’t tolerate and I have also done this one time when I collected my script from the chemist I opened the packet and checked it before I left the shop.

Wockhardt gets the most complaints.

I am very comfortable on Relonchem manufactured tamoxifen tho I do also take venlafaxine anyway as an anti depressant and yes my go told me they sometimes prescribe it to help with hot flushes.

I have also found Gensys brand to be fine and Teva to be tolerable but for me Mylan not so good. So your own physiology will play a part in the side effects.

I still have occasional hot flushes but usually I am drinking tea or coffee. I have found drinking decaf of either makes no difference, I still flush.

Oh and you may like to try magnesium flakes in a bath to help bone ache; not Epsom salts which contain magnesium but a bag of the stuff from a Wellnss shop.

Wishing you a better future.

Much love Debster xx

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How great you listening to your body gets you the answers! Fxx

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Dear Titch

Sorry to hear things are being tough right now. How great that your wisdom had you reach out for support ✨💛✨ and there are so many great answers of support here.

Here’s my experience in case it adds any new dimension. I’ve now had bc 3 times!!! The first time I also had tamoxifen. Initially with zoladex, and I started to feel low almost immediately so came off it to let the zoladex work alone. At the end of 3 years and zoladex they put me back on tamoxifen. I took it for almost 5 years but gave it up when my periods and emotions were all over the place and I feared this was onset of menopause.9 months later I had the second bc diagnosis- a recurrence.

I am NOT suggesting that my stopping tamoxifen had anything to do with the recurrence, indeed the surgeon first rather glib comment was that ‘that’s the problem with tamoxifen, we know it masks symptoms’. This time I did zoladex alone as I knew switching the whole lot /hormones off would provide the relief from symptoms that was causing my suffering!

Having got a second recurrence diagnosis- third overall diagnosis- last summer I have come to the conclusion that the medical profession as we know it, ie NHS under its current restrictions does NOT REALLY KNOW the answer. Indeed in the last 50 years since it’s been dishing out chemo and drugs etc etc proclaiming the best in treatment and cures there has been no reduction in the death rate. And I don’t say this out of anger but from looking at the facts. Likewise the mental health profession has no solutions for the rising number of mental ‘illness ‘ cases we see despite proclaiming they have the answer and many hormone therapy drugs having mental illness as a ‘seemingly acceptable ‘ side effect! In my book there is. Nothing acceptable about this and I will not compromise my mental health for a fingers crossed promise.

I truly believe it is for us to listen to our bodies, and make decisions from a place of clear mind (and I appreciate this might be hard for you right now) and from a place of love , for ourselves.

I turned down chemo the second time. I have no regrets. I was hell bent on turning it down this time too but in the moment agreed to go ahead. I’m recovering now. No regrets but I can say I never felt ill until I had it!!

What I do know is the the understanding I started to learn 4-5years ago and now teach has changed my life forever and I have great mental peace and resilience and unshake-ability which is an awesome place to make life decisions from! I have never felt so good, so confident or so optimistic and I am extremely determined to live at least as long again as I have to date as I fully intend to LIVE every moment of it! We only have now!

I’ll happily share more with you and have a personal chat if you’d like. And I’ll extend that to any woman struggling in this forum. Drop me an email on fwright2003@yahoo.co.uk and I’ll share my number for a chat.

With very much love for Making Magic Happen.

Fiona xx

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