Hi there
I am 39 years old. I was diagnosed with early stage, strongly EP breast cancer in February of this year. I had lumpectomy and radiotherapy and have been on tamoxifen since my diagnosis (so about six months now). I am suddenly realising that the emotions I am feeling (like permanent PMT) are probably due to the tamoxifen and not just the ‘cancer experience’… I don’t think I can live with permemant PMT for five years! I was wondering if others have experienced this and more importantly, whether people have taken any natural supplements to help with the emotional side effects of tamoxifen (and if they have worked). I don’t want to take an anti-depressant or something like that to help with the effects of tamoxifen as I don’t feel depressed as such… My kids start school again tomorrow so plan to start exersicing more as I know will help… Anyway, before I do something drastic like throw the packet away,any help/ideas gratefully received… 
Hi i have been given tamoxifen to take 3 weeks ago however i have had to stop it (lastnight) i have never been so ill and was always in a hot flush i couldnt even get out of bed. Is this normal does anybody know? The chemo didnt make me feel as bad as this i feel like a coward anybody else have any ideas to help me? 
I’m 12 months on from diagnosis, mastectomy to remove hormone +ve tumours, then all the lymph nodes out cos 1 of the 4 they sampled was cancerous, then a winter of chemo.
And I’ve just given up on the Letrozole I’m supposed to be taking - took me a while to realise the permanant PMT feelings & total lack of energy & depression were due to the drugs.
I see my oncologist soon to see if there is an alternative, otherwise I’ll go for quality over quantity on the life expectancy front…
My first 3 weeks wee similar with the hot flushes thing but it has got better so try to persevere if you can. It’s a drug that has helped manywomen beat or at least suppress this thing. I urge before takingsupplements that help with hot flushes such as red clover, becareful as these may effect the success of the tamoxifen as there are a lot of supplements that try to the same job as tamoxifen and try to compete with it.
Regarding the mood swings, it isready to start to look for side effects particularly if you read the literature. I would advise throw the leaflet away, try to be positive and stress free ie don’t worry if the housework isn’t done, who care? And maybe things will improve. I suspect you are still angry and anxious about your situation, trying to juggle kids and home and job through all of this and maybe that is the root of themoose swings. Hope things improve for you, it’s early days as they say x
Tamoxifen also gave me severe depression after the Chemotherapy sent me through an early menopause. I felt so dreadful I could not function so I was prescribed the anti depressant Setraline which started to help after about 4 weeks . As others have already mentioned you cannot really take any alternative treatments as they all interact with tamoxifen. I really wanted to stop taking this drug as I hated it with a passion , but I also wanted to stop the breast cancer coming in my other breast. I have carried on and am learning to cope by being kind to myself, being mindful of what I am doing and resting when I feel tired. Hope you feel better soon. x
Hi gritstonegal,
I think it’s worth trying Tamoxifen, even if you’re past the menopause, like me. I have also had Arimidex, which gave me hand problems, then back to Tamoxifen, now Exemestane, which is more tolerable for me than Arimidex. But there isn’t much difference in the effects of Tamoxifen and AIs.
Margaret
Unfortunately as the posts above say there aren’t any alternatives if you are presribed hormone therapy - it is either Tamoxifen or one of the AIs.
I had absolute terrible side effects when I started taking Tamoxifen last year, whilst at the same time having 12 months of Herceptin, to the point where it affected my ability to get up and go to work every day. And at the time I was also taking a low dose anti-depressant for the flushes.
I made the decision to stop taking it whilst on Herceptin as clearly all together they were having a detrimental effect on my life. I finished Herceptin in February this year and gave my body 6 months to recover and decided at this point to try Tamoxifen again in the hope that it wouldn’t be as bad.
I had already squared it in my head that if the same happened again I would go for quality of life over quantity of life. No one seems to condemn women if they choose not to have chemo or rads but if they choose not to take Tamoxifen the brigade is out, saying how terrible you are risking your life etc etc.
However, this time having spoken to people who took the original Nolvadex tamoxifen and who said that there were less side effects than the generic versions as it wasn’t made on the cheap I decided to buy from overseas the original Nolvadex. Now I am lucky I am in a financial position to be able to do so (about £100 per month).
I have been taking it for around a month now and so far the only se’s are slight warm moments rather than hot flushes and no joint pain, cramps, depression, weight gain or terrible mood swings at all. All of which I had with the generic versions.
What I believe is that each and every one of us should take the course that is right for them and do not condemn anyone else for whatever they decide to do. I don’t think anyone should say you must or should do this or that or the other. I would say that if anyone is in a position to buy drugs then the original Nolvadex is available out there and it does seem to offer less problems. But that is often the case with any drug in its original form.
Hi everyone… Thanks for your responses… I really feel my emotional side effects are getting worse. I am making an appointment with my oncologist and I will ask him about different brands. I get the feeling he is quite medical and right wing in his approach (I took supplements whilst on radiotherapy and he wasn’t interested and equally doesn’t really think diet or stress or emotions or anything has an influence on cancer and I do). Has anyone benefited from any homeopathic or herbal or accupuncture or anything in conjunction with tamoxifen?? I don’t see any point in taking a drug that is ruining my quality of life… But at the same time I am not ready to throw in the towel… There must be a solution. It may be that I find it with tamoxifen or I go down a more natural route and get my quality of life back alongside an increased risk of cancer returning. At the moment, if things don’t improve, I will have to choose this option for my sanity!
I have been on Tam for nearly 3 months now and the se have been managable …hot moments mainly and a few achy joints sometimes…however I woke at 3am this morning like a stiff board and achy joints everywhere.I came down and walked around a bit I did loosen off after while…the pain was horrendous at first and a bit scary …so after a little cry and a pity party I pulled myself together and then got my period.I am hoping that the joint pain this morning was down to pmt’s and it will only get that painful around this time each month. The thought of comimg off Tam would be scarier for me than the joint pain…I will keep an eye and see how it goes though as it was pretty rough last night…my husband joined me as tea maker…bless him…I dont take any supplements but would it be ok to take cod liver oil do you think.
Thanks
Kate x
From a medical point of view (I am not medically trained, just very interested in the stuff I’m taking) you do need to be careful with taking other stuff with Tamoxifen, not because it will make you feel sick but because it makes the Tamoxifen less effective. The reason for this is that some drugs (like Prozac) and some herbal remedies (like St John’s Wort, and I think sage, or cohosh or something like that) are metabolised by the same pathways as Tamoxifen, resulting that the active metabolites of Tam aren’t produced in the right quantities.
If you decide to go down the anti-depressant route, there are several that ARE ok to take with Tamoxifen. For a number of non-cancer reasons I’ve been taking anti-ds, with the happy benefit that the flushes and mood swings have been really helped, so if you have those SEs, don’t completely dismiss using anti-ds just because of the name. The dosages used for dealing with flushes is a lot less than when used as an anti-depressant. There are a lot of drugs that are used for widely differing conditions.
I was having a hard time of things earlier in the year and spoke to my surgeon, who suggested that I could take a 3-month break from Tamoxifen to see if that would help. It did, and I went back on it when my other life stresses had calmed down a bit, and so far I’m coping reasonably well (with ongoing help from anti-ds at full strength).
If you are particularly interested in looking at other non-medical things, you could do worse than having a look at the Penny Brohn Cancer Centre in Bristol. They offer free residential or non-residential courses that discuss nutrition, relaxation, etc etc. Worth a look.
Taking any of these drugs is such a big/ life changing decision. The side effects almost make me want to stop. 2 things that really help me are walking, even if it’s for only 5 minutes. Eating nutritious food and… yes, a little help from Klonopin. I know some folks think they aren’t going to give any benefit to your emotional, physical and mental well being, but after starting them 6 months after the agony of Letrozole side effects my quality of life IS much softer. These side effects from aromotose inhb. can and do make us all a little crazy. I made the decision to do something simple and fairly safe for this. The anxiety meds, taken as needed. have worked great for me. I take the 2 hours before bed so I sleep well and fell better in the morning. Hot flashes and muscle aches no longer interrupt my sleep. It’s probably not for everyone… but they’ve been a Good send for me.