Hi everyone,
Has anyone else experienced depression after starting taking tamoxifen?
I’m not sure if its the tamoxifen or the general situation, however, I’ve been pretty much ok all the way through diagnosis and treatment, and now 4 weeks into the tamoxifen I’m feeling really down and can’t shift it.
Hearing about other people’s experiences would be really useful.
Thanks
Richard
I would be inclined to say it’s the whole situation and the grim reality of it all. I hate my one boob, my prosthesis, my Lymphoedema sleeve and glove, my weight gain and my Hot flushes, just to name a few!!
People around you think that everything is fine now, hair grown, back at work etc. etc. but I feel like a completely different person xx
Hi DD
I have never been depressed in my life but God am I ever now! Been on Tamox for 2yrs and been depressed and hopeless for all that time. So not sure what can be done - really do not want AD’s as I need a clear head and I am afraid of being deluded. But I am miserable all the time and all the medics suggest is perishing counselling.
I think Lynberi is right though - the whole thing is an issue for us all.
Wishing you both health and happiness
Love
Jane x
Jane, honestly there is no shame in taking anti-depressants. I was on them a few years back to help me through a really difficult period in my life and it was only after I started to feel better that I realised how ill I’d been, and how poorly I was functioning. If you think you might get some benefit from them, don’t dismiss them. I was a lot more human when taking them than before I started, I just didn’t realise it at the time. There are also counselling sessions that might be useful, you may be able to get information from your BCN or your GP.
Richard, you have it even tougher than we do in that there are so few men who have this horrible disease.
I haven’t started on Tamoxifen yet but will do soon, so I can’t make any specific suggestions. You might find the helpline has some tips they can give you.
Hi CM
To be fair no-one has suggested them as the local GP thinks anything that is all in your head should be talked about and not medicated. And I’m fine now so clearly it’s all in my head by his logic. In fairness, talking does not help but his recommendation is talk more, hence back on the forum.
Thanks for your honesty, I did not men there was shame in taking AD’s, just that I am afraid of losing my grip any more than I already have.
Love
Jane x
I hope your GP has come up with some suggestions for counselling to help with talking about things, and with someone who does understand the specific issues of post-cancer, and someone you can relate to. An online forum can only go so far in the progress you can make with specific issues so having a flesh-and-blood person to talk things through with can be very helpful.
As for anti-d’s, I wanted to stress that needing anti-depressants ISN’T an indication of failure, though that’s certainly how I was thinking of them before I took them, and getting that extra bit of help can be the first step on the road to recovery. Getting a bit of chemical assistance to help me through my trauma was the best move, and meant that I was finally able to deal with the situation that had caused the trauma in the first place. Long story, not BC-related, but very difficult at the time, and anti-d’s most certainly had their place. As it happens I didn’t really relate very well with the counsellor and feel it could have been better if I’d found someone I related better with, so it’s important to find the right person.
Hi Richard
Yes I was very depressed on Tamox. Initially I was given the generic tamox and after 8 months I just couldn’t carry on taking it because of the depression. I came off it and took Nolvadex D which was discontinued, I was then asked to try generic tamox again. It had exactly the same effect, severe depression and so, being post menopausal, I’m now on an AI, Exemestane.
I did think that if the depression returned the second time I took, because I knew what was causing it I would be able to cope, but I couldn’t.
I’m not sure about your situation and whether there are any altenatives to Tamox for men but I would certainly have a word with your onc and see if something can be done it really is an awful feeling. You have my full sympathy.
I hope you manage to get something sorted.
Love
Jan
Hi again CM
Thanks for that, I suppose because my GP is so against it I have sort of developed a fear of taking anything like that. Most worried about not being clear headed and the GP is very much of the talk to your friends school of thought, but they really do not want to know all about this stuff. In truth I was sent to the psychologist in Autumn 09 by the BCN but she was not someone I could connect with at all so I never went back after the first appointment. Maybe when the recon is finished it will feel less depressing.
Good luck and thank you for being so sweet
xx
Jane, you clearly haven’t met me, “sweet” is NOT a word I’d ever think to use, that’s really cheered me up!
Back on the Tamoxifen question, I’ve read lots of threads on here that the different versions (Wockhart, generic, summink else) can have different side-effects, so would it be worth trying to swap to a different brand?
Wow, I didn’t expect to get such a great response, so quickly.
I imagine it’s a combination of things, going back to work hasn’t been the experience I was expecting, and together with the side effects of the tamoxifen it’s getting me down. The really worrying thing is whether this could last for the whole 5 years of taking it, I’m not sure I would carry on if that’s likely.
I think I need to go and speak to my doctor, although if he tells me to talk about it, I might punch him.
Hi Richard
I think you are right you need to get some help. CM’s right, as ever (she talks a lot of sense that woman) there are lots of different versions of tamox. Don’t think because it’s still tamox it will have the same SE’s. It’s the stuff they put in the tablet with it and the coating which very often cause the problems. The Nolvadex I took was still tamox but I was really well on it until it was discontinued.
You might have to stamp your foot!! Have you got a BCN? I find that my BCN is more helpful than the docs.
Best of luck with it. Keep us posted.
Love Jan xxx
Richard, I’m not on Tam yet (give it a week and I will be) but I have read from lots of ladies on here that the SEs do usually settle down after a while. Question is, of course, how long is “a while”, but if you try different makes of Tam you might find that sorts it for you.
Getting back to work is a weird one, isn’t it. I just can’t get my head round work things (just finished chemo and shortly to start rads so might be expecting too much of myself) but I imagine it’s even worse for a bloke who’s been through BC than for a woman, because of it being so rare there is even less understanding.
Richard, try changing brands.
APS was best for me, whokhart was ok, but I had three weeks on Generics and thought I was going crazy. Sobbed everyday, it was terrible. The day after changing back to APS, was fine again.
Apparently even though there is the same amount of tamox in each tab, different labs synthesize the drugs slightly differently and that can cause the different se’s.
I’m sure you know but exercsie, fresh air and sunshine is great when you are feeling down too.
hello ladies and gents hope the day finds you well under the circumstances , i started tamoxifen on tuesday , last night i had my first sweats in the night , today have felt so tired - slept for 2 hours this afternoon ! i am taking tamoxifen with zoplicone 3.75 mg as i suffer terribly from anxiety and wasnt sleeping at all so doc prescribed them , what i wanted to ask was how many variations of tamoxifen are there ? i m not overly concerened bout the flushes but depression and mood swings bother me a lot , i have suffered from depression ( in the winter ) and know how bad my pmt was , any suggestions that can help would be fantastic thank you xx
Hi I was prescribed Tamoxifen for 5 years - didn’t agree with me - took the tablet everyday for 2 years - was told i could stop taking it, this was 2006 - drug free eversince.
WHY take something that makes you feel worse???
David
I was dx 3 years ago and after chemo and rads was advised take arimidex. Un fortunately I already have a mood disorder and this drug made it ten times worse ! I also tried armosin and tamoxifen and the same thing happened. I saw my onc about this and she said that having got to three years already and the disabling side effects had such an adverse affect on my life I could stop. I do however still get the ‘tutting’ and huffing from some doctors and some other people even those who had bc about not taking the above drugs because of my E+++ dx. I have had a full hysterectomy before BC in 2004 (dx 2008 aged 38)so less risk to me as have no ovaries so very little oestrogen any way. I did persist with the drugs for as long as could but became so emotionally unstable that feared being hospitalised.I realise that everyone is different and if i could tolerate the drugs I would certainly take them !!
Rachy xx
Hi Richard,
I sorry that this will be a non-answer but I am a BC man and have been on Arimidex for almost 3 years with no apparent ill effects.
I was never prescribed Tamoxifen so I can’t compare but I have a suspicion that hormonally, Tamoxifen is tougher on men.
On the plus side, apart from havimg the “rugby shirt” look on my chest, I’ve been free from Lymphoedema and really only suffer from hot armpit and other nerve damage.
I worked through chemo because I have an easy desk job (and very understanding boss) but I imagine that going back to work after a break would be tough.
Don’t be too tough on yourself and try and see the positives because physically, you are at the new “normal” and this in my opinion, this is probably as good as it gets.
with best regards,
Ian
I had Breast Cancer that had grown outside the tumor. After cancer Surgery and treatment, oncologist wanted me on Arimidex for 10 years. After two years I could no longer stand the side effects. I felt Like I was a walking dead person. Went on Tamoxifin and I still have bad side effects of severe depression. Dehabilitating Anxiety. I want so badly to try natural alternatives, but am afraid of the Cancer returning. I feel I have no life.
I have now been taking this awful drug for 7 years , I I have wieght gain , feel old , no confidence ,depressed , crying at the drop of a hat , does anyone else have these symptoms ,just feel it’s just me ,coz everyone else including my doc doesn’t think it related ??
Hi L,good chance your symptoms are related all the symptoms youdescribe can be side effects of meds.You need to have serious discussion with doc/Oncologist re the impact they are having on your quality of life and weigh up the pros and cons of stopping .