04-11-2018 03:31 PM
I recently got out of a psychiatric hospital after having been on Tamoxifen for over 2 years. I was experiencing depression unlike any I have had before, and when I started having suicidal thoughts, I called my neighbor and had her take me to the local ER. They took one look at me, asked a few questions during which I could not stop crying, and arranged for me to be transported to a hospital.
I mentioned to the doc there that I suspected that my symptoms have to do with the Tamo, but he sort of dismissed that, and put me on Effexor after I had told him that when I had tried SSRIs in the past for situational depression, they had a negative effect on me. The Effex made me more depressed, so, after consulting my oncology counselor and having her tell me that it was ok to lay off of the stuff ‘for a while’ I went off of it, and within a week, I was feeling human again, after 10 days, I am back to being my old self. I felt that the psychiatrist did not have any experience with this problem, maybe now he has.
I can’t tell you how awful I was feeling for close to a year, the symptoms getting much worse so that my summer was a disappointment, and by early Oct., between crying at the drop of a hat, joints aching, having no energy, and becoming obsessed with the idea of ending my life because I could not stand to feel the way I did anymore, I was a mess. Ultimately, I had diagnosed myself, and the hosp. stay, while relaxing, was probably unnecessary. If my onco doc had told me up front that depression was a common side effect and that if I experienced any such symptom to discontinue its use I would not have panicked and I would have simply stopped using the Tamo, avoiding all of the drama and expense to the ins. companies.
So...just a thought for those of you who may be in the same sitch.
04-11-2017 12:11 PM
Everyone is, of course, different and will react to treatments differently. Just got to do it and hope for the best.
I have had rads twice with no issues, just told to not go sun bathing for a few months. And I was on Tamoxifen from 1999 to 2009 then back on it Jan 2017 both times with no side effects.
I've been lucky as it's been an easy ride so far and a long one coming up to 19 years. Was only 26.
Good luck and stay positive!
18-10-2017 12:37 PM
whilst it is true that some people have moderate to severe skin breakdown, it is not inevitable and many people also report no side effects to the skin whatsoever, (I'm one of them) so try not to worry but just take your rads team's advice. Re sun-cream - I think you may be a bit confused by the advice you have been given by friends. Whilst we are all told that after rads is finished we must wear a high facfor sun screen when out in the summer sun, my understanding is that using it during the actual rads treatment is a definite no-no. (or it may be that I have mis-read your post and that is what you meant! Apologies if that is the case - the old brain is not what it was - nothing to do with bc, I'm just getting on a bit!) I think you need to discuss this with your team. They may recommend creams, but it seems to vary so much between hospitals, with some hospitals saying use nothing, some recommending various creams, and some saying use whatever you usually use, so I'd be guided by them. It's good to use a cooling cream in the evening after the day's rads session though, provided it is one you have used before and know you are not allergic to the ingredients.
I'm sorry to hear you are struggling with the hormone treatment. I take my Ansatrozole before bed which seems to suit me, and I've been on it since February this year. Weight gain is not inevitable, but I do find I need to eat fewer calories than i did before bc in order to maintain my weight, and take a bit more exercise, so I guess it is a case of us being careful with what we eat from the outset so any gain is only a couple of pounds which can be lost quite easily, rather than waiting till it's a couple of stone. I haven't noticed much difference in mood as a result of the tablet to be honest, but I think that what we have all gone through with diagnosis, surgery, rads, and in the case of some people, Chemo, that it would be surprising if we didn't have periods of sadness and grieving for our previous lives, and coming to terms with our future ones which, while not necessarily worse, will be different in some ways, so it may not be the Tamox but a normal reaction to what you have been through so far and with the rads still to come.
Hang in there girl and join the radiotherapy thread for November when it is posted, then you will get lots of advice and support from folk who are at the same stage as you. All the best. xxxxx
18-10-2017 11:41 AM
14-03-2017 06:34 AM
Linda, you are not alone in this situation. I have been taking Tamoxifen for almost 2 years and I hate it ... I gained 50 lbs since I started that med. It feels like I gain weight even after glass of water (((.. Hot flashes are just unbearable and almost every 30-40 min- with a cold sweat running over my entire body while I feel like I’m on fire and my skin looks so flashed and red. I feel like I have aged at least 30 years overnight( and Im only 47), I constantly cry, Im angry, so moody it is just unbearable, and don’t let me start on my mood swing....or none existing sexdrive. It is just awful... Tamoxifen causes joints stiffness big time, and some days I can barely walk.. Both of my docs Onco and Radiation said “yes, Tamoxifen known for causing ALL that ", we did drug holiday, switching time when I take med ( evening to morning then back to evening again). T supposed to prevent cancer from reoccurrence- but I really don’t care anymore because of the miserable quality of life I have due to Tamoxifen. Im a medical professional, I know all about the med and what it can do to you.. Sucks…I m considering to add Effexor- which usually effective for HF but for me mostly to level my mood issues. So, you are not alone….:
14-12-2016 08:03 PM
07-12-2016 04:32 PM
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 😢😢
04-09-2016 07:29 PM
I had a WLE in March. I could bore you all to death with the unbelievably stupid responses from supposed specialist nurses.
Anyway I refused radiation....no one ever uses the word burn, but the oncologist referred to total complete skin breakdown.... and all the **bleep** they tell you about creams etc is just that...... **bleep** and he admitted as much!!!I had a very well defined cancer slow growing... good recovery nothing in the margins or sentinal node. So the radiographers lied to me and said they never see skin breakdown but they 'might just clip the windpipe,. My Father died in the 1950's because of bad radiotherapy and my oncologist said that now and then....we see women with a radiotherapy related cancer and it is bad news.
I am now on tamoxifen because I refused Letrazol the nurse said some of her ladies have trouble doing embroidery because their fingrs are stiff>>>>> what the fu...c..k I know a pal who was agym teacher and now can hardly get out of bed....thanks Letrozole, fear is my friend.
The oncologist wrote to my GP and said that radiotherapy would only have medium effect.... I would have suffered for weeks and months because I refused to start being burned 3 weeks after surgery...because i was in agony.
I am 5 and a half months after surgery, I still have pain in the breast on a daily basis and every day i think about dumping the tamoxifen in the bin. Horrific sweats, hellish nights, foggy recall, memory changes. weight gain unless you starve yourself, hair thinning, skin drooping and general feeling like **bleep** ....nausea....push yourself as I did last week to walk 13 miles and my god you pay for it.
i have asked for medical retirement...never saw that coming!!!
Yes..I feel fairly **bleep**...ed up all these women who advertise their brave battles and how marvellous I am make me want to punch them/ Bet I am not alone!!! xxx
PS Great news I have a very dear friend now dying from cancer in the uterus related to tamoxifen and what do you do?
21-02-2016 08:18 PM
30-07-2011 10:39 PM
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,
08-07-2011 11:10 PM
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 !!
08-07-2011 03:54 PM
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????????????
30-06-2011 05:00 PM
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 wasn`t 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
30-06-2011 08:05 AM
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.
29-06-2011 11:03 PM
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.
28-06-2011 08:52 AM
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
27-06-2011 09:53 PM
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.
27-06-2011 09:41 PM
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?
27-06-2011 08:53 PM
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