Severe mood swings/ low mood and tamoxifen

[sashbash]

I've been on tamoxifen now for 2 years and while physically I seem ok, the impact on my mood is horrendous. It's not all the time, but I notice massive fluctuations and a feeling of weariness, despair and a loss of drive and confidence. I don't know if I'm going a bit mad or this is to do with the drugs. Has anyone else experienced mood shifts with tamoxifen and what do you recommend? I'd love to hear some thoughts! x

[Pbsoup]

I had a terrible time on Tamoxifen. This was about 9 or 10 years ago after my initial diagnosis. Chemo had already put me in early menopause, then Tamoxifen did a number on my hormonal balance. I had no prior history of depression--but may be sensitive to hormones as I used to get pretty bad PMS. In any case, this depression was in its own league. Worse than the cancer--at least that early, stage 1 cancer!

My oncologist didn't seem to believe me, she prescribed antidepressants and called it a day. I think a lot of women have this problem, but it is dismissed as an anecdotal side effect. She did say that the Tamoxifen was even more important than the chemo ...

In the end I stopped taking Tamoxifen and the antidepressants . This made things worse for a bit until it was all out of my system, then I was totally fine again.

BUT I wish I had persevered with the Tamoxifen, because now, a decade later, the cancer is back! Would this have happened if I had stayed on it longer? Who knows...

Are you pre or post menopausal? I am on Arimidex now, which is an aromatase inhibitor for post menopausal women. My mood is fine (other than the occasional oh shit I have MBC moments of course)

In any case, talk to your doctor. This is not in your head. Don't let them pass off the depression as brought on by the stress of cancer. Shifting hormones around is serious business. Before the cancer came back, I would have been more cavalier about recommending coming off the Tamoxifen early. Now, I would never say that. But the mood swings are not to be toyed with. Hopefully your doctor can work with you to find a way to both suppress estrogen and balance your moods. So much has changed now, new medications, etc. Good luck!

[sashbash in reply to Pbsoup]

Pbsoup, thank you so much for your message. I'm so sorry to hear that your cancer came back and I hope you're able to keep it under control with the drugs that you're on now... I can imagine making the same decision with stage 1 when it's balanced against crazy low mood.

I had stage 3 and was at the top of the scale for ER+ so am committed to being on some kind of estrogen surpressant for a decade. But I feel like I'm caught between a rock and a hard place. I've tried to speak to the hospital but they say that they can't see me til January and to be honest I don't think i can wait that long. I feel sick in my head now, and so full of bad thoughts about myself.

I went straight into accelerated menoapause when I started chemo 3 years ago and then immediately onto tamoxifen. But in the way that they do the hospital did all the medical treatment and then told me to go and get on with my life. Nothing ever about mood, emotional response, hormones, menopause.... And although it does come and go a bit, at the moment I'm feeling so bad inside and so distressed in my mind that I think I'm going mad because on the outside everything looks so normal. The only way to describe it is like what goes on in my head is like a form of mental self-harming.

Sorry, I know this is a bit of a deluge and thank you for being there and hearing this.

x

[Bagrat]

I am reading this with interest and as already suggested do discuss with your doctor. Where I live there is open access to the Breast Care Nurses for five years and they may be able to help. I wS given the choice of Arimidex or tamoxifen and chose tamoxifen because of the side effect profile of both ( I'm post menopausal)

Have only just started a month ago and with 3 more radiotherapy treatments to go. I'll just have to see. Thank you for posting and please let us know how it goes

[sashbash in reply to Bagrat]

Hello Bagrat, yes, I will chase the doctor. I did see my GP and say that I was experiencing really low mood and she looked at me and said 'what about anti-depressants?' - but I don't want more drugs that mess with my mood, I want less. I'll explore what alternatives there are to tamoxifen. I will let you know how I get on. Thanks for your reply and for being there.

[Bagrat in reply to sashbash]

Have you thought of ringing the nurses at Breast Cancer Now

breastcancernow.org/ they work office hours and are great for advice and support . I'm not a fan of their forum as have trouble finding my way round but the Macmillan forum has a breast section and is very friendly and you'll get more response than here

community.macmillan.org.uk/...

[Nmartinez15]

I hate tamoxifen ( before I got my ovaries remove) I feel extremely tired and I didnt want to do anything. I stop taking bc I could not go work. Now I am on letrozole bc I was dx w cancer again and removed my ovaries. I have alot bone pain but not now the pain decreased.

[Pbsoup]

Hi sashbash.

Are you in the UK? Or US?

If you are post menopause, my first Oncologist, who was at Sloane Kettering and very experienced, put me on Anastrozole (arimidex) at the tail end of my treatment before I went into "survivorship," which is code for I only see a nurse practitioner after reaching a 3 year milestone. I didn't take it then, as I was so dismayed by the Tamoxifen (and not in my right mind) but she did say it tends to be easier on the emotions than Tamoxifen. It is what I am on now, along with Ibrance, for Stage 4, and I have not had any mood issues-- so might be worth asking about specifically. (of course, I am now 10 years on post menopause so there aren't that many hormones left, so that could also account for why it's not effecting my mood this time)

There is always the option of removing ovaries as well. I asked about it, but was told it was a drastic step so didn't pursue it. Hindsight being 20/20 I might have pushed harder.

The trouble with antidepressants and Tamoxifen is there are only a limited number that work with Tamoxifen. I was on something that was new at the time called Pristiq. It was a newer version of Effexor. When I wanted to get off it, not even my psychiatrist knew the best protocol so I stopped cold turkey. REALLY BAD IDEA as it is an extended release drug so my brain went into revolt for a few months. Then, as I said before, I was absolutely fine. But I am very resilient so am not sure everyone would have the same outcome. And the road from crazy to fine was not a scenic one, if you know what I mean.

So if you go the antidepressant route--which is perfectly acceptable, and likely there are newer, better drugs than ten years ago, make sure you understand how to go on AND off. Trust me, these are not things doctors always consider.

Bottom line--if you are in UK, channel your inner pushy American (my husband is British and I have family there so know both systems) Insist on an appointment and figure this out. You are not crazy, but your hormones are amok. You need to suppress the estrogen, that is very important (I am a cautionary tale) but quality of life is important too.

One other maybe useless idea, but might be worth trying--there is a book in the UK called the Inflamed Mind written by the head of neurology at Cambridge called Edward Bulmore. His thesis is that some depression is actually an inflammatory disease. He talks about how this might open up new drug options, but when I read it (it's an easy read) it occurred to me that perhaps an anti-inflammatory diet could help as well. I am on a similar diet that my integrated oncologist recommended and feel really good--other than cancer, but that's a detail It basically means a plant based diet with limited meat, alcohol and added sugars. I don't find it hard to adhere to. And allow myself very occasional wine, steak etc. With "very occasional" being the operative words. He described it as my body is like garden soil, and cancer is a weed. The goal is to make the soil as inhospitable for weeds as possible. It won't cure me, but it might keep things tamped down a bit longer. I figure it can't hurt!

Good luck. Keep me posted. This is a subject of interest to me as, like you., the doctors did not take the Tamoxifen/mood link seriously at all. I wish more women would talk about this as it needs to be discussed and women experiencing it need to be supported not dismissed.

P

[1965Katy]

Thank you for posting this. I can't offer any help but I found it very relevant/interesting. I am about to start radiotherapy for Grade 3 IDC and will be starting Tamoxifen beginning of January as I'm ER+ 8/8. I am 54 postmenopausal but can't take AIs as I have osteoporosis from a history of eating disorders. I am already struggling with having had to come off HRT cold turkey so I am dreading the side effects of Tamoxifen - I have to take it for ideally 10 years. I have always been against anti depressants because of weight gain and also don't like taking drugs, but I think in this situation it might be worth trying them. If it makes the Tamoxifen tolerable then that is more important. I have read that Citalopram, Venlafaxine and Ecitalopram are the only ones that don't stop the Tamoxifen working. Quality of life is so important so it might be worth giving one of those a try. And also alongside do all the holistic stuff like mindfulness, anti inflammatory diet, exercise etc.

I hope you find something that makes you feel better. All the best x

[sashbash in reply to 1965Katy]

Katy - really good to hear from you. it's been on my mind to try different brands and you've given me the nudge I need. i've got an appointment with the clinicial medicine dept to at least have a chat about anti depressants but I feel quite resistant to taking them still (have you read Lost Connections? I know that's got something to do with it...!) as if I've got enough drugs coming in and causing havoc and don't want any more at the moment! I hope radiotherapy goes ok for you in the new year, if it helps, for me the idea of it was much more challenging that the reality, but I know it's different for everyone x

[1965Katy in reply to sashbash]

Thank you Sashbash. I haven't read Lost Connections but it sounds like my kind of book!

I've had 2 sessions of radiotherapy now and my shoulder and ribs above breast is achey in bed. I hope that isn't going to get worse. I would be so interested in hearing how you get on with different brands of Tamoxifen. I have heard that Teva is good but I guess everyone responds differently. Do you have a nice understanding oncologist? I am really struggling with mine. She is nice at appointments and then her clinic letters are not very nice at all. Her latest one has really upset me. I'm finding her letters are almost more distressing than the cancer itself! I can't wait to just be seeing my GP again. Who do you get your Tamoxifen from? x

[Trumps]

Hello Sashbash. Have you tried changing brands? When I was on Wockhart it made me feel very low but when I changed brands it was like a dark cloud had lifted. I do still have mood fluctuations but they are manageable compared with how I felt.

[sashbash in reply to Trumps]

Brilliant - yes - I'm gonna try another brand. I've definitely heard others have a tricky time on Wockhart. did you find any particular brands were better?

[Trumps]

Teva is my preferred brand. Unfortunately they have stopped producing the 20mg tablets so your Dr would need to prescribe the 10mg ones which are still being produced (then take 2 per day). My chemist had to hunt them down but they are out there. It’s definitely worth a try, it made a big difference to me. Good luck

[pegomh]

I was low mood and crying and just a damn mess, was ready to stop taking Tamoxifen because my quality of life was horrible. Even the dr agreed on QoL. They suggested it may be a chemical imbalance and I never believed that nonsense. But 2 years later, I am joyful. Did Effexor upto 150 mg. And now I’m at 0 and in a much better place. So I’ve changed my opinion. This is what worked for me. I hope you find peace and comfort today.