Hi All,
Just wondered how people were getting on with their Tamoxifen. Has anyone else suffered from depression? I’m sure my depression is a direct result of taking the Tamoxifen. I feel it’s sucked me dry of any femininity I ever felt…bit dramatic I know, but just feel my “softness” has gone & that I’ve turned into a dry & brittle old bat!!
Would be interested to hear your thoughts!
Emma x
Hi Emma,
I have been on Tamoxifen for 9 months. I did suffer some depression after a couple of months on the drug. I definitely think the Tamoxifen was partly to blame but in my case I also think it was the reality that I had cancer that had really begun to sink in and concern about the next stage of treatment, which in my case was radiotherapy. I was also suffering from other side effects of the drug.
The depression has lifted but I do find that I can be quite emotional. I’m really easily moved to tears-I’ve become quite a softy!
Hope this helps.
Tina
x
Hi Emma,
I am watching and monitoring how I’m getting on closely. Only in my first couple of weeks. Everything was fab til day 10. Since then I have had dragging abdominal discomfort, which I’ve not had for several years and some spotting.
Now a few days on, and never having suffered from PMT I am finding it very tricky not to be too impatient with my 4 year old and hubby. Feeling furious, then tired. Not liking the feeling at all. Getting quite dark and down.
Hoping it will abate. Wondering if it would be sensible to keep a diary to look for patterns?
Good luck!
Sorry Emma,
Forgot to say that I also felt that my femininity had disappeared and that I was past my sell by date. That feeling has gone and I feel my old feminine self again.
Also I think keeping a diary is a great idea, Crabbit(I’m sure your not). I did have a number of side effects initially but they did/are settling down. My consultant told me it can take the first year for things to settle so hang on in there-there is light at the end of the tunnel. Remeber we are all different and your body might settle down sooner.
Tina
x
Hi Emma
I was very depressed on tamox. I took it for 8 months initially and couldn’t stand it any longer and changed to something called Nolvadex D which they stopped making nearly 2 years ago. When that happened I went back onto tamox and it had the same effect. 8 days taking it and then my mood dropped like a stone.
There are different brands of tamox, it’s the bulking agents and the coatings which cause most problems so it might be a good idea to ask your pharmacy to get you a different one to try. Nolvadex D was tamox but different bulking agents and coating. I felt really well on that.
Hope you soon feel better.
Jan xxx
Gosh Jan, interesting that your mood changed so soon. Although it was like flicking a switch with me at day 10 I almost couldn’t believe it could cause problems so early.
There is another forum here which detailed the 3 main suppliers of Tamoxifen. Boots gave me my hospital ration of 30 tabs and they are Wockhardt, this being one of the red flag brands which seemed to cause SE’s.
Superdrug do generics so going to get from there next and keep monitoring. You never know?
Take care all.
xx
Interesting comments. I have been on Tamox less than two years and hate it more and more every day… still do not dare to stop it. It is difficult to gauge its effects because I suffer from mild to moderate ME too… but I am definitely more tired, depressed and my insommia has become unbearable. Despite taking sleeping pills, I go through periods of sleeping just 5 hours a night and since I can’t sleep during the day just drag myself around like a ghost, unable to make any decisions or enjoy anything.
I am probably a lot older than you since I am on Tamox due my osteopenia (AI can deplete the calcium in your bones, which is something you have to take into account too).
I believe the Tamox I was taking was Wockhardt. Now I have looked and it says “generics (UK) limited Potters bar”.
I have been reading a thread from another site where a lot of women were taking breaks from Tamox and I am very tempted to do that, to see if there is any improvement… the problem is… will I want to go back to it afterwards?
Crabbit, how can I find the discussion about the 3 main suppliers you mention? Thanks!
Iv been on a bariety of brands over the past 5 years. The only one that really didnt agree with me was sandoz but they stopped doingbthem about 4 years ago. APS and woerkhardt have been fine for me and are two of the heneric brands. Dont think you can get non-generic brands of tamoxifen any more now as it’s been around for so long. You do just have try different manufacturers to see if you can fin one that is right for you.
My side effects are more pronounces when i started taking them or following a break. Frequent hot flushes, dry mouth, dry eyes, constipation, itching… basically it just dries me out. The hot flushes weren’t as bad as the ones on chemo or since having my ovaries out. But SEa are all very individual and some people won’t get any problems and a few will have everything. But most wi ne somewhere in between.
If you think your meds are causing side effects speak to your onc or GP about it.
Lulu xxx
I am convinced the differences in the intensity (or absence) of SE is mostly due to the fact that some women do not metabolize Tamoxifen, while others metabolize it partially and others fully.
However, that test (can’t remember the name now) to measure this is not offered in the UK as far as I know.
PS: Just found the name of the enzyme. If you are interested it is explained here:
healthscopemolecular.com/info/general/Test/get/53/testId/
However, it would be interesting to know exactly which group the rate of survival is compared to…
CAn someone tell me what SE means please? Am I being a bit dumb?
I know it sounds terrible but it’s so good to hear that I’m not on my own with this. The sad thing is that it’s contributed to the breakdown of my relationship as my boyfriend has been struggling first with the dealing of my diagnosis & consequently my depression & severe mood swings. It’s been a hell of a last 3 years.
Emma x
Hi Emma
SE’s are side effects
Best wishes
Lucy
Hi Emma
Sorry not to have replied to you, I’m visiting my brother for a few days and don’t like to monopolise his computer.
Yes my depression was like flicking a switch on the 8th day and it was worse first thing in the morning and in the afternoon. I tried taking my tamox at a different time of day but it didn’t make any difference. I’m post menopause and I now take Exemestane which is an aromatase inhibitor. These types of hormone therapy isn’t suitable for pre menopause ladies I don’t think.
I think you should talk to your BCN about your depression and see what advice you can get from her. It was my BCN who sorted things out for me.
I’m so sorry to hear that your relationship has broken down as a result of your BC and associated probs.
My marriage broke down too not entirely as a result of my BC but that was the final factor. BC is hard enough to deal with but having other major issues in your life to deal with at the same time is very difficult.
I asked for some counselling to help me through and it really helped. Maybe it would be something for you to think about.
Love and hugs
Jan xxx
Ah bless you Jan. I’m having counselling with a CBT counsellor who will help with changing behaviours & the depression. A shame as I’d been making progress & then off course the relationship broke down & I feel like I’m back to square one, but not quite so bad as I’m now on anti depressants, so ironically don’t feel depressed, just down right sad!
I moved a couple of years ago whilst in the middle of my herceptin (had already had chemo & radio) but never got in touch with my breast care nurses here in Southampton, I have however, got contact details, so think I may well give them a call & arrange to meet & have a chat. Good thinking batman!
Emma x
Hello Emma. I think you have to be Superman to face up to cancer and the SE (side effects) of the various therapies without feeling sad. I find there is a very thin line between sadness and depression and the former seldom gets addressed or named.
Besides, hormone depletion (in this case a result of Tamoxifen intake) is related to all the symptoms you are experiencing. It is good that you are requesting (and receiving) help. Bear in mind that BCC nurses, whom you can contact by telephone, are also a good option if you want to talk to a professional and can’t get an appointment straight away.
I find them extremely helpful and skilled.
Good luck to you. I have decided to stop Tamoxifen at least for a period, even if I do not manage to get an appointment with the breast clinic to discuss this. I woke up at 4am again today and I do not think I can function any more like this.
Hi Emma
You sound much brighter and I appreciate that you are taking medication at present and having counselling but I’ve come to realise that there are times when we do need a little help. BC and relationship breakdown I think is more than enough to warrant a bit of help. My GP has given me some anti-depressants too. I’ve only been taking them just over a week and I’ve just got back from visiting my brother and had a brilliant time. He always goes out of his way to ‘treat’ me when I visit. I do feel better but I’m not sure whether it’s the medication or the break away and ‘treats’.
Love to you, hope you continue to feel better.
Jan xxx
Hi all,
I was diagnosed 3 years ago and after surgery, chemo and radio started Tamoxifen. I too have suffered with depression and I have spoken to dr but he says no there is no link. The worst thing at the moment is anxiety just doing things that I used to be able to do causes anxiety and panic attacks. I also get hot flushes and insomnia it is great to hear that I am not going completely loopy and that other people also have these symptoms. I am seriously considering stopping tamoxifen as I am not sure I can carry on like this Life is crap the only thing keeping me going is pure stubborness even though some days I just want to hide under the duvet all day.
Sally x
Hi Sally
I’m sorry you are feeling so down. Wanting to stay under the blankets is awful, I’ve been there too. It makes life so difficult it’s like wading through treacle.
My doctor told me that hormone therapy causes an imbalance in hormones which affects our production of serotonin this can cause depression and anxiety attacks. My GP has given me a very low dose of Citalopram which, he says, will ‘kick start’ my body into producing serotonin and so make me feel better.
It takes 2 weeks to start working and my 2 weeks is up this coming Tuesday but I have to admit that I do feel better. Not different but I just seem to have a lighter mood and I feel more able to cope. I did post on here for information on Citalopram and it appears that there are quite a few forum members taking it.
It may be that your BCN could help by contacting your doctor or is there a different doctor you could see at your practice?
I hope you get it sorted, we really have enough to deal with and need as much help as we can get.
Lots of love and hugs.
Jan xxx
Fascinating reading.
I was diagnosed three years ago (tomorrow - hence the wobbly day!)at 35 and started the tamoxifen in the January by March I was off work with stress and depression and was prescribed Prozac.
It was only when I did some research on the internet that I found out Prozac and Tamoxifen are a no no. I then not only had to alert my GP to this but BCC people as they didn’t know!
Anyway, went onto Citalopram and all was good, came off it over a year ago and have been trying to claw my way out of a pit of despair ever since. I put it down to a knock on effect of all I’ve been through/work/not working etc. have given myself a range of excuses but never put it down to the Tamoxifen. I honestly thought I’d be back to normal by now and I also know what you mean about having all the femininity sucked out of you, which at 38 is a joke, I just feel like a dried up old woman!
Hi thanks for the messages. It was not my GP who said there was no link it was my chemo dr. I was prescribed citalopram last year but I had a terrible reaction to it so went onto Mirtazapaine instead but I came off of them after a year as they are anti depressants and I just felt numb whilst on them no downs but no ups and they did not really help with the anxiety. I have also had CBT and counselling and I am now keeping a mood diary to see if there are any patterns to when I feel really bad, despite the tamoxifen I am still having periods regularly every 4 weeks, if I can identify a pattern maybe it is hormonal?
Sally x
Hi Riggers
I was diagnosed at the beginning of last year when I was 38 and have been taking Tamoxifen since January. I became really depressed and by the end of January my GP prescibed Prozac which I have taken in the past.
I was alarmed to read what you said about Prozac and Tamoxifen being a no no. Can you tell me why this is or where I can find this information please?
I think Prozac has taken the edge off my depression and anxiety but I know exactly what you mean about feeling like a dried up old woman. I’m so tired all the time and feel like I’ve completely lost my ‘spark’. I also thought I’d be getting back to normal by now but that couldn’t be further from the way I’m feeling.