Crumbs ladies, you really are having a bad time on Tamoxifen. I took it for 6 months with no ill effects whatsoever and then once officially post menopausal I was put onto Arimidex so don’t be stuck on the stuff for 5 years if you “qualify” as post menopausal. I have had no big side effects on Arimidex either although during the second year I started to get pain in my finger joints but not really significant or bad enough to take pain killers. I know a few ladies who cannot start their days without paracetamol due to Aromatase Inhibitors. And you are correct, some brands of Tamoxifen are reported to be better tolerated by some ladies. Try and persuade your teams to look at changing your type/brand as it could make a big difference to your quality of life and that’s very important.
All the best.
Hi Dahlia …I am approaching 54 …Was premenopausal when DX at 52…
How do they know when you are postmeno …I have had two periods since starting Tamoxofen 18 months ago ?
hi all …hope we havent murdered anyone yet !!! laters buddies
Mazxxx
Olwen …I have a load of bloat too …is it safe to take the herbal water tablets do you think ???
I not only feel like a camel since my LD I look like one too xxx
Hi Ladies,
No longer on Tamoxifen(3ish months) now Arimidex since last Aug/Sept.
Maz,
How do they know you are post-men? Errr time you had your last period and blood tests and age… also for many younger if you’ve had your overies removed. Do correct me if I am wrong.
Age is not that reliable, I was in mid 40s when I had last proper period and took docs ages to believe that I was post men. and even now they don’t believe it in spite of three blood tests… had another recently…
Alice
Alice …so just being 54 is not good enough ! they never do blood tests when i see the spec …just look at my boobs !
only recently had recon second attempt so that is foremost in their mind at the mo …woke up today with another bout of morning sickness and a mo fo of a head !..but have deided its is not going to get me dwn …mood today is the highest of high …but prob wont last will be ready to commit hari kari about dinner time !
thanx all
:-0 maz
Hi Maz
Really don’t know, I think they first take into account your age and when you last had a period. I was in mid 40s when had menopause started, hense blood tests to confirm this. I started my periods at a young ane so was not a surprize to me that they would end early.
Alice : )
Was so rational till i started taking this tamoxifen, now even moving is difficult because i cant be bothered. Cant stop crying and cant make a decision, how can one pill mess you up so much?
Hi Angel
I am sorry to read that you are feeling so low, please feel free to call our helpline for more support and information about coping with/managing your symptoms on 0808 800 6000, the line is open today until 2pm and then weekdays 9-5, hope this helps.
Best wishes
Lucy
hi everyone hope today has not been too bad for you all.Alice how are you getting on with the Arimidex in stead of tamoxifen and why were you taken off it,because I am seriously considering asking to get my tablet changed if poss.?It is awful out of all the people who correspond through this link that there can be so many side-effects!As I dont qualify for free prescriptions my doc suggested I apply for a 4month pre-paid certificate which I did today as I am on 4 different medications and it works out cheaper.
Hope the nice weather has helped to buck some of you up sometimes not even that helps.Keep your chins up.Joyce.xx
To answer your Q Joyce, I came off Tamoxifen, should not have been put on it since I had thickening of womb lining and 2 months of bleeding post-men. I have aches and pains all over, but have had these for some years on and off and hot flushes yes, varies from day to day. It depends on the individual, as they say not everyone will get side effects. Obviously you have to be post-men. to take an AI.
My only doubt re Arimidex is that my base line scan showed I already had bone thinning.
Alice
Just want to input if anyone is reading this thread and getting put off tamoxifen…
I have been on tamoxifen for 8 weeks now , and it is the cheapo CP pharmaceutical brand , and I have no side effects at all… right enough they could be lying in wait for me… Im 45 and pre menopausal. Begining to wonder if it is actually working !
I have had friends that have changed to Nolvadex d that were suffering and got on a lot better ,and also taking it at night has helped. I take mine then with 500 mg evening primrose oil.
Hope you all can get some relief from the side effects that you are experiencing.
Sandra x
thanks Alice,probably reason they are loathe to put me on Arimidex is because my mum has osteoporosis and I am slight built(and hate to admit it when so many of you are putting on weight with Tam.am underweight)and have regular check-ups to keep an eye on my bone-density for that reason so if there is a chance it will have an adverse effect on my bones they Prob.won’t consider it.
Sandra maybe we should all change to your brand of Tam.and see if we can get rid of some of our side-effects,long may it continue for you.
take care all and enjoy good weather.Joyce.xx
Hi all,
Maz, I’m taking aqua ban for fluid retention and did speak to one of the bcn’s before taking it, she said it was OK. The aquaban seems to be working slowly, I can cope with that as I’ve had tablets from the doctor in the past for fluid retention and they were so strong that I would only take them when I knew I wasn’t going to be too far from the loo.
Don’t know why but I’ve felt quite abit better mentally these last few days, I haven’t done anything different. I would hope that all of the SE’s could be controlled by lifestyle changes, I’m going to keep a diary of what I eat each day and how my SE’s are because I know that red wine and spicy food aggravates the hot flushes for me and yesterday my stomach was so bloated I felt embarrassed at work and when I thought about it I’d eaten more bread than usual. I could be barking mad but I’m prepared to try anything if it stops me from stopping the tamoxifen.
I searched on the internet for herbal remedies for depression and on one site it suggested a diet high in omega3 so I’m going to increase my intake of that to see if it makes a difference.
Hi all
So glad I logged on tonight. Its the first time I have been back on this site since January (the night before I started taking tam. I frightened myself senseless with reading what side effects I would probably get!)
I am 36, and was diagnosed with bc last August and had a right mastectomy followed by 5 weeks of radio. I started tamoxifen in January, and like you Sandra I have had few side effects so far. The odd hot flush, and have definitely gained some weight (if I am being honest with myself though a 5 week holiday to Australia did that for me!) and mood swings for sure!
For anyone reading who knows that they will be starting tamoxifen soon, please don’t worry, go with the flow and see what happens. We don’t all get all of these side effects. I resent every tablet that i take each night, but know that I HAVE to take it so that I can see my 2 small children grow up.
Out of interest … my periods haven’t stopped yet? In fact they are probably heavier but still regular. Will they stop???
Lots of love to you all
Heidi xxx
hi all …hope everyone is enjoying the weather and stuff …welcome to any newbies xxxxx
I havent put any weight on with Tam which is a blessing so I should be grateful for that …think my moods are probably worsened if I am brutally honest by a husband that annoys the s***t out of me …and maybe I am looking for an excuse to blame something other than admit that we are having problems …he aint the supportive of men …has a BC phobia !! Hey ho …still got up with the nausea …but at least that passes …not brave enuff to stop them so will try and look to diet perhaps …I am so grateful to you all for your suggestions and thanx for all your support thru my constant whingeing :-0 well as the sun has his hat on today …i am going to try and sort my garden out before work tomorrow love yu all my BCC Buddies
Ciao …Maz xxxxxxxx
Hi all.Maz just reading your letter and probably you have hit the nail on the head about it not necessarily being BC that is causing your moods but your otherhalf!I had the same for a while when diagnosed as if he could not cope but thank goodness he walks away now instead of arguing with me non-stop and that is helping.My daughter was a great help because she had a good long talk with him and told him a few home truths.Hope things improve for you but all your friends are here for you.Just going out to get a bit of fresh air so will need to look for s.t.lotion dont want any more problems! Take car all and enjoy nice weather.Joyce.xx
Just wondered how Sal got on with her weekend break of tamoxifen x
Been stuck in a black hole all weekend - headache, exhausted, depressed etc etc… But woke up this morning and the headache had gone and I actually felt as if I had some energy. 3 days off the drugs and I’m starting to feel better. When I got back from rads, I spent an hour gardening and now I’m shattered again. Although my mood is definitely better:D
Not sure what to do now really. I had decided over the weekend to have the 2 week break that the onc suggested. But now I’m thinking that I might just do the switch to Nolvadex now. At least it gets it over and done with and I will know where I stand sooner, rather than later.
Maz, dealing with others is definitely hard when you’re not feeling right. Don’t worry about whingeing - this thread is a whinge-fest!! But at least you can get it off your chest. (no pun intended. Lol)
Dear Salopets, It sounds ghastly what you are going through. I spent one month on tamoxifen and had lots of horrible side effects. Decided I’d rather get my life back and feel better than 5 s…years. It wasn’t an easy choice but have decided to do all I can to stay healthy and boost my immune system. So I on supplements recommended by the Bristol Cancer centre and also follow their vegan diet, [with a little meat when I’m desperate!]
I go to a homoepath and have got my hormones regulated. I feel really fit now, better that I have for a good few many years and make sure I keep my stress levels down.
It all depends how much faith you have in the conventional medical profession and I think there are other ways of getting back to health. But this my opinion and for some ladies the tamoxifen route is the one they feel happiest with.
I think many of us put too much faith in conventional drug treatment apparently 37% of women come off Tamoxifen because they can’t tolerate the side effects. And that’s the official number!
Why not do some research on it and talk to others outside of the medical box.
Best wishes
Leadie
Hi Heidi, I had a mirena coil fitted and have had 4 blissfull years of no periods…however as my cancer was 100% ER and PR receptive the old coil was fished out. Have just had my first period so tamoxifen doesnt seem to be holding mine back unfortunately.
Sandra x