I’ve just spent the last 4 years on Tamoxifen and thougth I’d post an honest blog of my experiences whilst taking it.
Initially, I had the hot flushes and the night sweats this was for approximately during the first two years. Then the depression set it, which was deep - not wanting to go out, washing, dressing and so on…
Aches and pains, head aches, nausea, loss of appetite, tiredness, all part of daily life.
I was put on an anti depressant - Venlaflaxine to help with the side effects. Along came severe highs and lows - I thought I’d become BiPolar! I’d be euphoric one minute and crash the next. I believe the Tamoxifen was causing the mood swings then the Venlaflaxine was increasing their potency.
I managed to return to work and started getting chest infections. For 6 months I struggled with recurring infections. Then noticed on the Tamoxifen instructions - ‘can mimic signs of pneumonia’ You have to laugh at that - I picked it up the doc didn’t.
I haven’t taken either drug since early April 2009 and I must say I feel relatively normal lol My head is clear, no more confusion, much more clarity - I can feel again. Ok, there have been the withdrawal symptoms - but it’s so worth going through them to come out the other side - free of chemicals that quite frankly were making me feel like some crazy loon and not able to cope with life.
I hope I don’t scare any newcommers, but if I had been told what Tamoxifen does to you - I would never have taken it. And it would have saved me feeling ‘off my head’ for 4 years - and saved me a fortune as I wouldnt have been spending so much when on a high lol
However, I look back now and am glad I made the decision to come off Tamoxifen. I don’t intend to take any other prescribed drug. I take supplements and changed my life style to help.
Hi Jeni, wow, you really suffered. I’m at the other end of the experience having just started a week ago. After chemo and rads and the SE that accompanied them it’s now tamoxifen, what joy! I have to say though that I am keeping a diary to pinpoint SE and see if there is something that can help them - such as EPO or Starflower, plus other meds which dr can give.
When I first came onto the forums and read some of the posts re; chemo particularly Taxotere I was truly terrified. My onc asked me to keep an open mind as people’s experiences varied and boy, was that true. Some people had every side effect going and others hardly any at all. I was lucky and didn’t suffer as badly as some others. I think it just shows that people react differently so am hoping my tamox experience isn’t as awful as yours.
Thanks so much for sharing your experience and I’m so glad that you’re now feeling so much better - this bc experience isn’t pleasant (that’s an understatement!) but I feel glad that there are meds that can help us overcome it. I found chemo rough but was glad I could have it. No doubt in years to come there’ll be other better, less harsh drugs that are just as effective if not more so, I hope so anyway.
Take care, Pat x
oops, haven’t I put my foot in it - when your just starting lol to be honest, it’s been the last year where I have really noticed how Tamoxifen was effecting my mental health. I’d notice the high’s and lows and the reducing bank balance (which was already poor, due to being a single mum and on benefits)
I could cope with the physical aspects, I guess it’s a case of head down and do your time so to speak. But for me the head work was different. I am glad I did 4 years, as I know it has and will give me a good chance of surviving for a very long time
I feel more in control of my life now, things are moving forward (very slowly) at last and my 5 year mark is this August x 10!
I apologise if I have upset anyone at all, I think I forget sometimes what it was like at the begining going through the intital treatment and diagnosis. On the other hand, I hope I can show at least one person that it is do-able and there is light at the end of that dark tunnel - and life can turn around for the better
It is a long journey, but it can be very rewarding and healing.
Hi Bin, yeh that particular wig def looks better on the dog! I’m desperately waiting for mine to grow and of course it’s very slow!
I think it’s great to hear honest opinions and experiences from people, otherwise it’s like going into the unknown which is far more scarier than having some knowlege. I personally feel quite down now, having just finished 7 months of what felt like non-stop treatment. I was also quite an anxious person long before my dx and I know women can have depression and anxiety related to bc and the menopause. So if Tamo ADDS to that, it won’t be much fun and because it’s a 5 year thing too… I think, once they consider you to be post-menopausal they can change to a different drug, but really don’t know much about it as yet.
As I said before, the wealth of information on this site is phenominal, and it’s also amazing how women’s experiences differ even though they have the exact same treatment. I think your post will make people aware of what can happen, not necessarily what will happen. Well, I can hope, can’t I!!
Glad you are well, take care, Pat x
Hi Binnie.I admire you for taking the plunge and stopping the Tam.I started mine in December and was just very tired till about 8 weeks ago I started having dreadful headaches which is making me very irritable and really low.The consultant at the hospital last week was loathe to change my tablet as he said the SE of another could be just as bad or worse so I came away feeling dejected.On reading some of the other letters a suggestion was to change my one 20mg tablet to two 10mg to see if that would help.Did you try that?I just hope maybe that might work because I dont think Im brave enough to come off it like you have.Hope your still feeling the benefit of not taking it. Take care.Joyce
Binnie, it is good to hear all the effects that this drug has on you, not only does it give us all a clue as to what things to be aware of, it also makes us remember that none of us are alone. I started about six weeks ago, having hot flushes and night sweats and feeling low in mood already, so we shall see, but thanks for sharing your experiences.
Angel.
Hi Angel good luck with you just starting out we all seem to have the hot flushes in common but all seem to have other symptons as well. I have bad headaches but others have worst than myself.Just keep an open mind and hope you dont get anymore added.Just as you say its good to know there are others out there to help when were feeling low.Good luck.Joyce
Hi Binnie and all …I have been on Tam for 18mths …the worst side effect I have was “morning sickness” vile …no hot flusshes to speak of aches pains…yes …but recently and dont want to alarm anyone the worst …my mood swings …I am already on citalopram for depression and anxiety but I feel as though something has taken over my mind I am a witch !!! I used to have the highest highs and lowest lows …but recently its all lows …I hate them I am being vile to all around me …dont want to do anything go anywhere getting to work is a bloody effort …3 and a half more years of this I will be sectioned or divorced or both!!! I never look forward to anything any more just dread stuff …help any suggestions xxxx
Maz
HI Mazaroo.Your up early sorry to hear your having a bad time.Going through same myself but thankfully not sickness just nausea and mood swings big time!As you say its as if someone is taking over your mind and you have no control.Im not on any anti-depressant just now and am trying to avoid them if possible by your letter its not helped you much!Least by reading others letter were not on our own by a long chalk.Keep your chin up and hope things improve for you.Least we can go on here and vent our moods!Take care. Joyce.
I agree. I’ve been taking it for 10 weeks now and feel horrible. I feel sick after every meal, I get headaches, occasional dizziness, cramp in my toes, mood swings, hot flushes etc. But the worst thing for me is the fatigue. I’m a very active person and this is really getting me down. I’ve just started rads and haven’t had chemo, so tamoxifen is definitely the cause. I’m going to try and speak to someone about it this week, as I’m very tempted to just stop taking it.
hi joyce …always up early me the aches in my legs keep me awake …I totally agree if it wasnt for this Forum I think I would have cracked up a long time ago …we all help each other and it means a lot to know that we are not going through it alone xxxxxxx
Salopets … I must admit I wish I was brave enough to stop …at the moment I keep taking it and row constantly with everyone !!! its a real dilemna c0s they dont understand and omg I am so forgetful "!!!
It is said the tamoxifen does most of its work within the first two years. As my BC was found in 15 lymph nodes I had been told I will have 5 years of tamoxifen and a further 3 years on femara. Having so much lymph node involvement I would not wish to come off tamoxifen despite its side effects. One of my main problems is weight gain. I have gained over two stones in approx 4 years. Despite taking more exercise, eating less and living a healthier lifestyle I find it almost impossible to shift the extra weight. Anyone with any ideas?
Mazaroo - I have just recently been prescribed citalopram. You say your moods are low most of the time - are you not finding it very helpful?
Hi mazaroo.How have you been today I was at work this morning and was thinking about you.I have been on AdcalD3 tablets for years because my mum has brittle bones and I was started on them as a precaution.Maybe thats why I dont suffer from sore bones.Might be a good idea to enquire if you could go on them to help your sore bones.That could apply to maybe others in the same boat that are logging in.Hope it maybe helps someone out there.Keep your chin up,know its hard but were all here to support each other.Take care.Joyce.
Glad you said that about being forgetful, Mazaroo. DH keeps telling me I forget things and this morning I left the house to go to rads an hour too soon. Didn’t realize I was an hour early until I’d been sitting in the waiting room for 15 minutes and looked at my watch. My brain is definitely addled!
Spoke to them today at rads and they are going to arrange for me to see onc on Fri, so hopefully I’ll get some answers then.
Hi all, hope you don’t mind me joining in. I’ve been on tamoxifen since the beginning of this year and am really struggling with it.
I’ve had problems in not being interested in anything and feel that I can’t be bothered all the time I presume its a kind of depression but this is something that I’ve never experienced before. We were on holiday last week in Majorca and although I struggled getting ready for the holiday I truly thought that it would do me good, wrong, I was a nightmare for my husband. I’m beginning to wonder if I should come off the treatment, last week really did highlight how unhappy I am. When I read the list of side effects on the leaflets I feel that I’ve got them all so I now wonder if I’ve turned into a hypocondriac.
I should be so grateful that my cancer was caught early and I didn’t have to have chemo or a mastectomy I only had a WLE (twice) and 15 sessions of radiotherapy but I’m not grateful I’m wallowing in self pity and don’t know how to get out of this black hole that I’m falling into. I phoned my bcn this morning but she’s on holiday until Monday, I’m going to make a list and have a chat with her next week.
Sorry to moan so much. Regards to all. Olwen
I am sorry to read that you are feeling so low, please feel free to call our helpline for additional support and a ‘listening ear’ whilst you await an appointment to see your bcn if you feel it would help you. The number is 0808 800 6000 and the line is open mon-fri 9-5 and sat 9-2.
Feel free to have a moan whenever you want. I too say I “only” had a mastectomy (or in your case two WLE’s) and I was “lucky” the cancer was caught early but we have been through a traumatic, life changing experience.
You may have noticed on some other of my posts that I have come off Tamoxifen due to side effects - severe anxiety in my case. I am waiting for blood test results to see where I am in the menopause so I can decide whether to take different hormone therapy. The Tamoxifen could be contributing to your depression. I had that “what’s the point in anything” feeling when I was on it.
Olwen, you’ve hit the nail on the head. I feel like that too. And I too had a disastrous holiday last month (a 3-day migraine, followed by 4 days of feeling headachey, tired, low etc). I too had a WLE, node sampling and have just had my 5th of 15 rads. I was recovering well until the tamoxifen kicked in. I’m seeing the onc on Friday and will ask about a change of brand. Otherwise, I can’t see me staying on it for much longer.
Don’t be sorry about moaning. That’s what we’re here for - to listent to each other and offer support when we can.
