I feel like I’ve been getting new side effects every few days since starting nearly 3 weeks ago!
The latest today is phases of extreme brain fog which pass quite quickly. And then come off again about 10 mins later. It’s v odd.
Anyone else?!
Hi Claribee
I was on Anastrozole rather than Tamoxifen but I experienced the same thing and for me it did settle down after a while . I think it’s relatively common with oestrogens blockers - have read other posts about it on here . I think that for most people it settles as our bodies adjust to the medication though some people do continue to have problems with it.
I found the first month very tough - no night sweats but hot flushes every hour in the day , racing thumping heart , brain fog and mood swings . After a month my heart stopped racing completely and everything else settled to a much more manageable level after about 6 weeks .
Hang in there !
Joanne. X
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My doctor prescribed 20mg/day but I only take 1/2 per day. This works better for me!
I have fewer hot flashes! Good luck
Hi there I am really scared because of all the talk of side effects with Tamoxifen. Today I have taken my first dose…a low dose as agreed with my oncologist and now I am waiting…I am most scared of the mood drop because I get anxiety and also the pain in muscles and stiffness. I am so scared but I took this first dose on my son’s birthday so I am doing it for all of them. The oncologist and others say that if I don’t try it I will never know. I have secondary in my bone marrow which is unusual I hear…my oncologist says he only sees one or two a year. I really am afraid. Can anyone out there help please.
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Hi again @claribee and hello @norfolkfred
Claribee I encouraged you to hang in there with Tamoxifen but if you’ve read some of my posts on other threads you will know I stopped taking Anastrozole after 5 months due mainly to joint pains and stiffness . Everyone’s situation is different , I had a slow growing cancer that doesn’t usually spread and my Breast Team were ok about my stopping it . My Oncologist had discharged me at the time but I know she wouldn’t have been too pleased . I’m a good candidate for getting another ER+ cancer , options such as lower does etc. were never discussed and I do wonder sometimes if I did the right thing - time will tell.
Claribee I advised you to hang in there because it will take time for your body to adjust and after a few months you can work out what your problems with it are if any and go from there.
Norfolkfred I understand your fear very well , I can remember looking at the packet and thinking "maybe tomorrow " . However your Oncologist is right . Bear in mind that we do moan a lot about side effects on here cos it’s a safe space to let our frustration out but not everyone gets side effects . I have a friend that took Tamoxifen and had no more problems than a few hot flushes which she was able to control by cold water swimming.
I’m giving you the same advice as I have to Claribee - plenty of water , exercise if you can , give it time but contact your team if you’re worried about anything.
I haven’t taken Tamoxifen but as I understand it there is much less risk of joint pain and stiffness than if you’re on Letrozole or Anastrozole . I found breathing exercises mindfulness and Yoga helped to get the menopausal side effects under control .
I’m sorry to hear you have a secondary in your bone marrow you could try posting in the Living With Secondary Cancer section for more support or asking via the helpline about the Someone Like Me service where they may be able to match you up with someone with a similar problem.
Take care and sending love
Joanne. X
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Hi - I’ve been on Tamoxifen for a year and apart from hot flushes that are now manageable I continue to take it and am determined to complete my 5 years . I did talk to my GP a few months ago about the side effects with little impact . The l
Flushes used to wake me up but they don’t now . I think a lot of my initial symptoms were from the whole cancer hangover - surgery and radiotherapy and the general shock of it all . Definitely keep going -
It’s got so much better for me especially if I avoid alcohol and carbs ( annoying!!)
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I just took my first tamoxifen pill last night. Second one today. I’ve had the worst headache and neck pain of my life all day with nothing relieving it. I’ve also been extremely tired and out of it. I’m not sure if side effects from this occur within the first 24 hours but something is definitely going on. I started with the Lupron shot after my lumpectomy with lymph node mapping but the symptoms were even worse. They also included joint/muscle pain, vision loss problems and increased depression. Are there any other, more recent, homeopathic treatments out there to prevent the return or spread of invasive ductal breast cancer? I’d like to do some research. I start radiation this month. I already have severe anxiety/depression disorder. Most of my family and so called “friends” have not been there for me. My boyfriend has been taking all his stress out on me, thinking I should just be fine, that I’m lazy, there’s no reason to be sad or tired, etc. I feel incredibly alone with this situation. Sadness overwhelms me. I can’t take much more of the degrading/dismissive comments from my boyfriend. It is nice to have found a site where others can relate to you. It is amazing to see who really cares and who never did. Most of them strangers and friends. I’m 45 and just diagnosed. My dog is my therapy. My life. Do I continue the tamoxifen or look into alternative methods? Thanks in advance for any input.
Thank you for your replies; the next day I felt completely different! Almost normal. So strange. I’ll feel more confident when it’s been several weeks of this! (Unless I had a bug; there’s a lot of covid around me.)
I am still only 8 weeks post op and also 6 weeks post completely coming of my last bit of hrt. My arm started puffing up a bit last week though is better this week so I think everything is still settling.
I have been slowly increasing exercise and weights as per the book/ website “move through cancer.” Bit confused about which bit to follow (post op or starting hormone therapy) but I’ve noticed that daily or every other day weight lifting as described in the book really helps. Dancing to the radio suffices the aerobic bit! I also walk the dog at a fast pace. However- if I over do it or don’t eat properly I do have very tired brain fogged days the next day or two. But it passes and then I find I can do more.
I also split my dose into 10 in the morning and 10 at dinner time after discussing with bc nurse and also the Gp pharmacist. I think it may be helpful too but it wasn’t instant.
I’m determined to stick with it and also focus on slowing improving fitness. It’s hard though. I’m off work to deal with it all and cope with kids and family life. And radio therapy to come.
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Thank you Joanne for your reply. So far there is nothing bad to show for it but I am very tired, but then I was before so who knows? I will have taken a few doses when I see the oncologist and I will have a discussion about how successful this is at keeping the cancer at bay. We shall see…Norfolkfred X
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Hi @nmarch78
So sorry that you had such a rough time with the Lupron and now Tamoxifen .I didn’t start with symptoms for a good 48 hours but it may well be related - if it continues you should certainly report it . It does sound like you are under an awful lot of stress though.
It would be great if our personal problems would just give us a break while we are going through treatment but instead BC just creates more of them or makes the existing ones worse . There are many posts on here in other threads about the reaction of friends and relatives that are upsetting but it must be particularly hard when it’s your partner. It could be that he just doesn’t get it and thinks that he’s helping you to get over it. Even when you’re surrounded by people who care you can still feel alone… You could try contacting MacMillan who offer free a counselling service or if there’s a local Breast Cancer Support Group or a Maggie’s Centre you may find support there too. After you have had radiotherapy the Moving Forwards course might be helpful too. There may be some free treatments such as massage and acupuncture available in your area that could help with the side effects you have been struggling with .
Sadly I’m not aware of any complementary therapies on the NHS that have the proven effectiveness of the anti - oestrogen therapies that are commonly prescribed . I’ve read that exercise seems to have a positive effect on recurrence rates particularly if you can increase you ratio of muscle to fat . I’m doing intermittent fasting / time restricted eating , the theory is that as tumour cells need more energy to grow than normal cells not eating for at least 13 hours will help to starve them out. Again it’s not proven but it has helped me lose weight. I know of research into some common drugs used for other conditions but no concrete proof as yet. There’s one that is available in Sweden and I think in some private clinics here called Iscador which is derived from mistletoe but again there isn’t the same evidence and there would probably be side effects. You really need to do your own research when it comes to complementary therapies and supplements because the evidence isn’t there or if it is it’s often conflicting and nobody wants to recommend something for that reason or will only recommend it to help with a side effect. Supplements in particular are a minefield for BC and I’ve had to change some of mine.
I am so glad that you have your dog , they are more loyal and reliable than people in my opinion and more loving . Look after each other .
Joanne. X