Hi everyone,
I wondered if anyone else is in the same boat as me, or if I should badger my GP/BCN.
I’ve been on tamoxifen (and mirtazapine) since Christmas last year, and am three months out of rads. To be honest, I feel awful. No vomiting or tummy upset, mind, and not really nauseous or lost my appetite, but I’m really fatiguedlethargic, barely moved except between bed, bathroom and kitchen/living room today. My head feels a bit swimmy, disequilibrium I think rather than vertigo, and I had the most excruciating lower stomach ache/cramps this morning, swollen belly, ‘stiff’ bladder even though it was empty. OH was thinking about calling weekend doc, as I was rolling around crying for about half an hour.
I did have one small glass of wine with dinner last night. I have been finding recently that the even after 175ml of wine the next day I have a hangover from Hell, can’t get out of bed before noon, and feel gruesome all day - does anyone else get that on tamoxifen? I’m panicking that I’ve got liver disease as I’ve been having really bad pain in my upper right back/shoulder blade consistently the morning after a drink. It isn’t bone pain, doesn’t show as anything wrong on chest X-ray or CT; a couple of weeks ago my GP did full blood work and said all was normal, despite a few other liver like symptoms in the digestive department. Is it possible the CT contrast since the the blood test has broken me? Or could this all be down to tamoxifen? Do you think I should ask my GP for an ultrasound? He thinks it’s muscular but I don’t agree. My spine has been clicking and making strange noises a lot since I started tamoxifen, almost like it’s not straight - being pushed by a massive liver??!
I’m guess it’s all side effects, and thus ok to feel cr*p, but I just wondered if anyone else feels this awful?
Thanks,
Lisa xx
Hi Lisa,
I have put for you below the link to BCC’s publication regarding Tamoxifen, I hope you find it helpful. Also, our helpline team will be only too happy to talk to you about this, 0808 800 6000, calls are free.
www2.breastcancercare.org.uk/publications/treatment-side-effects/tamoxifen-bcc20
Take care,
Jo, Facilitator
Hi Lisa,
sorry to hear you are feeling so rough. I am also on Tamoxifen and mirtazapine (Tam since Dec, Mirt since Feb). I don’t have the same symptoms as you but today I had my 6 month Onc appointment and what you have described matches the questions the Dr asked me about being on Tamoxfen. So, ask BCN to get you in to see Onc to discuss Tamoxifen because I think thre is a good chance that some of what you are feeling is down to Tam.
I too find that I cannot tolerate alcohol well, if I have some wine it increases my night sweats and makes me feel rough the next day. So, I only have it on occasions.
For me the worst part of being on Tam is the extreme night sweats - really, really hot at about 4 am and hard to get back to sleep. But, I need to have hormone therapy and as no evidence that I am post-menopausal I will have to stick with Tam.
Hope you get some answers and solutions soon, Helen
Hey Helen,
Thanks so much for your reply, it’s good to know there is someone else out there on Tam and mirtazapine (I think I posted on your thread about mirt a few months back??). I’m sorry to hear you have dreadful hot flushes/sweats; it’s one side effects I’ve not really had, fortunately. I hope yours settle down now you have passed the 6-month mark.
When you saw your onc what feelings/side effects did he question you about? I just got asked how I was doing on it (I said I was getting fat and had occasionally puffy ankles - at the time the rest of it wasn’t as obvious!). I would be interested to know which of mine match what he said, just for some reassurance really. My BCN is a bit dismissive of effects and changes which might or might not be caused by treatment; if I suffered something that could be a side effect she would say it was even if it turned out to be something else. I thought I had a new lump once; over the phone she just said it was probably an enlarged lymph node from a cold - but I didn’t have a cold for ages before.
I suppose what I’m worried about is disregarding symptoms as side effects when they are actually down to something else and need treatment.
Since my dx I have barely drunk much alcohol, just feel too gruesome the day after. But it really is so much worse since I’ve been on T these 6 months, I can’t cope with feeling so lousy the day after a sniff of wine so I’m not really missing it! It makes me feel so much better that someone else can relate to the alcohol intolerance - may we both suffer in sobriety! Seriously though, I really was starting to think my liver was packing up for some unknown reason, so thanks for normalising and grounding me 
I too need to make Tam work as am pre-meno and ER 8/8. Plus I didn’t finish chemo so might have stray cells lurking…
Best wishes to you, and thanks again.
Lisa
Thanks Jo for the link to the Tam info. I will have a peek now.
Best wishes,
Lisa
The only problem I’ve had since starting tam last September is that I suffered leg cramps at night. I started on magnesium supplements which helped a lot so it’s not a problem now.
No problems with alcohol unfortunately - I wish there was as I might lose some weight 
Hi Lisa,
the questions I was asked by the Onc registrar were about headaches, stomache pain, bladder problems, aching joints - pretty much the list you find on the leaflet in the Tam packet. Is it worth talking to your GP about all this? Also, I know some Oncs do actually say ok to taking supplements whilst on Tam (not mine) so perhaps there are things you can take to ease the SEs.
Our journies look a bit similar - I too was unable to complete chemo! I developed pneumonitis and breathing problems as a rare reaction to paclitaxel and so did 12 weeks (4 cycles) FEC and then just 5/12 weekly paclitaxel. If I should ever be unlucky enough to need chemo again I will not be able to have doxetaxol or paclitaxel apparently.
Hope you find a way to get some answers
Helen
Hi peacock,
Thanks for your reply. I have been getting the occasional toe cramp in the last few weeks but nothing horrendous. Glad to hear the magnesium is helping. I’m trying to drink more water to see if that helps.
I hadn’t had a period since January, but (warning: TMI ahead!) I started bleeding today so I reckon that was the cause of my belly cramps at the weekend. I had hoped they were gone for 5 years…! Hopefully not a sign that the Tam isn’t working, or worrying bleeding. I am seeung my GP next week, and also the breast team at Charing Cross, so I can quiz them then.
Helen, we do have similar journeys albeit for different reasons! It’s nice to know I have a travelling companion I hope neither of us need chemo again. I only did one FEC, and medically was (sort of) ok to continue, just not mentally or emotionally, but it is still there as an option should I need it. Pneumonitis sounds awful; have you or had you had other lung issues to deal with before bc? I have a recurrent pneumothorax but it’s only small these days so breathing isn’t too laboured/short, although a couple of days after chemo my lung collapsed again; walking to A&E from the station was hard work!
Fingers crossed, we could all do with some luck!
Lisa xx
Hi all wanted to jump in on this thread about tamoxifen I’ve been on it since Sept 2011 and have noticed all the usual side effects including weight gain (nearly 3 stone first time Ive ever put on weight) and my onc has admitted to me that it is tamoxifen that is making me put on weight, very sore joints especially ankles and hands when I get up first thing in the morning I shuffle about for the first hour like I’m about 100 (actual age 45), now I’ve put on weight mainly around my middle but its not wobbly its very firm and was wondering about swollen liver (I’ve had CT scans and apart from some lung mets I don’t have any further spread so why is the liver swollen I did do all the usual chemo/surgery/rads over 2 years ago and am continuing on a combo of herceptin and tamoxifen, am I right in thinking that you ladies are blaming tamoxifen for swollen liver, it would make sense to me if it did cause a swollen liver sometimes my abdomen is so uncomfortable and I stuggle to get up!!! Also I take a heap of supplements and have done from the start although I was told to avoid eating grapefruit and taking red clover whilst on tamoxifen. xxx
also forget to mention that I suffer with wicked hot flushes and night sweats x
Hi sarahlouise,
I have out on a tonne of weight for the first time in my life too. Ok, not actually a tonne, although some days I wonder how I’ll ever do up my jeans. I have buying ones with more ‘give’ and stretch Since being on tamoxifen and mirtazapine I have out on about half a stone; at 9st 4 I am the heaviest I’ve ever been. Most of it is on my bum and thighs, with a bit of extra belly fat - I can squeeze rolls of it, and my belly isn’t hard, it’s squishy fat 
I had an eating disorder for years as a teenager; now I am just trying to accept that I am not overweight - yet - and have been through a lot. I’m not dieting, but eating more healthily and trying to exercise (difficult with the fatigue). I am 33, feel like 83 most of the time with a sore knee, tired dry eyes, headaches, mood swings, belly pains… Grr!
The reasons why I have been worrying about my liver, not least because tamoxifen can cause damage to it, are that I feel full in the upper right of my abdomen (which might norm nothing to worry about), have sporadic dull pain in the region, and I’ve had a lot pain in in my right shoulder blade area especially after even just a sniff of wine. My liver blood tests are all normal, so the GP isn’t worried, but I don’t like pain. It usually means there is something wrong. I was worried that my liver had become enlarged due to the tamoxifen and was so big it was taking up more space I inside my ribcage and squashing my insides - but I think that is very unlikely given that I’ve only been on it 6 months, and my blood work is fine! If you have had CT scans I’m sure anything sinister would have been picked up, notwithstanding the limit of detection of the scanners. But if you are concerned about your firm belly - I don’t think it’s ok for you to struggle to get up? - perhaps ask your GP to examine you and do some tests? He will probably want to know if does it go down overnight? Is it like fluid or fat? Is it better/worse after eating or sleeping? etc. I think sometimes we (certainly I) forget that there may be other, non-cancer causes for our symptoms. It’s just so hard trying to work out what we need to worry about - I’m so grateful for all the responses and support in this site!
I must be one of the lucky ones, as I don’t get hot flashes or night sweats from the tamoxifen. So assuming it’s actually working that is one side effect I’m not - so far - suffering. I hope yours are bearable and don’t affect your sleep too much.
What treatment are you on for your lung mets, just herceptin and tamoxifen or something else as well? My last chest CT showed no mets - yay!
Lisa xx
Hi lisa, Glad too hear that your not suffering with the hot flushes and night sweats at least thats one blessing for you. I’m on herceptin forever and tamoxifen for at least 5 years out of the two drugs the tamoxifen has been the worst for side effects with me personally. Of course we all react differently to these drugs and there is no ryhme or reason as to who gets what side effects. The weight gain is by far the worst for me not just because of body image but because of balance, I’ve fallen over about 6 times and landed with a thud very hard and thankfully someone else was with me to help me get up off the floor! I believe because I’m not used to being this big that I’m struggling to find my natural balance and one small trip makes me fall over. I was always about 8 and a half stone since starting tamoxifen in Sept 2011 Ive now balooned up to nearly 12 and a half stone. I’ve done 4 hours of yoga this week and last week walked over 10 miles across the coast path which was lovely BUT none of it is making any difference to the weight gain. My liver is enlarged but this could be left over side effects from the chemo, if you are experiencing any pain then keep going back to your Doctor they have to address it and at the very least give you some form of pain relief medication. I’ve a huge box of co-codamol and take one if I am experiencing any pain. sending you lots of love and light xxxx
Just wanted to add my experience with tamoxifen. I was first diagnosed over 15 years ago and was on tamoxifen for 8 years. In that time I became tea total as I had such bad hangovers after the smallest amount of alcohol. Once I came off it I was fine again. Unfortunately the cancer returned in the same place in2011 and I had a mastectomy. Am now on Letrozole and no side effects so far,
Hi Lisa
Have to reply to this one.
I was on tamoxifen for 2.5 years and felt completely dreadful on it all that time. I kept getting told that my recovery from the treatment was slow and that might be the best I’d ever feel - wrong! About a month after coming off tamoxifen I felt like a different person entirely. I’m now on AIs as I became menopausal. I had a 6 month period where the tamoxifen was leaving my body and the AIs were building up and during that time I felt great. Unfortunately, now I’m having terrible side effects on the AIs!
Back to tamoxifen - crashing tiredness and fatigue almost every day and terrible brain ‘fog’ and memory loss.
Alcohol - I have barely touched since I finished treatment at the end of 2009. I can’t tolerate it any more as it makes me feel ill and I get drunk on half a shandy. And yes, one glass of wine is enough to give me a hangover. All liver function tests (blood tests) are normal.
When you say you were rolling around on the floor, where was the pain? It sounds like you may possibly be suffering from acid reflux which I’ve had since finishing chemo. When it’s bad I get terrible pain between the shoulder blades, discomfort in the tummy and pain in the stomach area - also feel shivery. Most days I get a kind of empty, gnawing feeling in my stomach. If it is that, then yes, a glass of wine could well set it off as that’s very acidic adn that’s another reason I don’t touch it. My Mum has acid reflux and gets bad lower stomach pain with it. Treatment is usually drugs called proton pump inhibitors (omeprazole, or lansoprazole for example).
Can you describe exactly what your symptoms are especially when you were rolling around on the floor?
Elinda xx
Hi Elinda,
Thanks for your message! It sounds as though you struggled with tamoxifen in the same ways as me. Fatigue, brain fog, alcohol is a no-no, hangover feeling, all-out crap feeling really! I don’t think I can go on for another 4.5 years like this or worse
My pain when rolling on the floor was a really severe pelvic cramp that lasted a few hours. I’ve since been spotting so am attributing it to a sort-of period. I do get reflux and heartburn from time to time and gaviscon helps; but the other more worrying pain feels like it is inside my right rib cage, rather than my shoulder joint, it is much worse when I have a drink and is worse when I’m lying down. feels like something is inside and causing my ribs to push out and my back to click a lot. I have had it for five months and it isn’t getting any better. Add that to the intractable, debilitating fatigue and I’m treads to give up. I am frightened there is something seriously wrong, but all I get from my BCN and usual GP and the breast surgeon is “side effects”, “you’ve been through a lot so bound to be tired, give yourself a break”, and “come back when you turn yellow if you think it’s your liver”.
I saw a different GP today and he did more bloods; he is sending me for a liver and gallbladder ultrasound as the pain in my back/shoulder isn’t muscular or skeletal in his opinion so might be referred from upper abdomen. I forgot to mention the spotting (actually, I thought it had stopped) but will say something to the sonographer in case it is relevant. If all those tests come back clear he said he’ll refer me to a gastro doc at the hospital. My grandfather died from bowel cancer so I’ve always been worried about that, even before bc, even though I would be remarkably young (33) to have it. I also used to drink way too much so worry about my liver now that I’m on tamoxifen which can take its toll. I have had enough though. Whatever it is, I just can’t carry on
Thanks again ladies,
Lisa xx
Hi Ladies
Feel compelled to get on to a site as honestly can’t stand the weight gain. don’t feel in control of anything brain all mooshy, mood swings, emotional, shouting at my children for no reason. Seriously considering not taking it. Been on it for 2 yrs and in the big scheme of things it would increase my percentage of re-occurrence by 1% is it worth it? My husband said at the time that, in time that would be a year… I have a 3yr old (she was 1 when dx).
Oh dear, I have become obsessed with my weight Ive even taken up running.
Has anyone does anyone is anyone putting on weight?
I have put two stone on;-( feel fat frumpy,moody,mushy,emotional…oh hang on just like you…oh i hate it just been changed to something else as im 49 havent had a period for two yrs so they change you after 2yrs on tamoxifen to something that makes you feel the same;-( i was hoping things would improve but they are just the same i dont sleep very well either but when i had a 2wk break i was me again so happy with energy that i dont have now.i look 9months pregnant not a good look at my age.xx
Hi everyone recently started the dreaded Tamoxifen. Night sweats and hot flushes unbearable now (already had 6 mths + due to chemo of them . (Thanking you so much really needed that on top of everything else!).
And now, spots. Flipping acne breakout. Am using my teenage daughters spot cream. I’m bl**dy 44! Wouldn’t mind if I had the figure, the social life and the carefree attitude. All I have is moodiness, stroppiness,.angst and flipping spots!!! Kevin and Perry have nothing on me.
Blimey ladies this all sounds horrendous. Possibly even more so as I am expecting to be put on them very soon as tomorrow is results day following wle. This journey sounds like it just gets worse. Hate this flaming disease and what we have to endure to get rid of it and try to keep it away.
Sam x
Hi ladies
I’m the same with the SEs - been on Tamoxifen 3 months now. Also have nausea and have found I can’t tolerate some foods (including chocolate!!!) and coffee which I would previously (before BC) drink by the bucketload!!
I haven’t had a period for 14 months (am 51) but my blood results were inconclusive so I’m still considered perimenopausal. I’ve just been prescribed Venlafaxine which apparently should help with some of the side effects (am hoping it’ll help me sleep as I’m only managing 4 hours a night if I’m lucky!). I hate that I can go from tears for no apparent reason to almost uncontrollable rage - that’s not me… and I don’t like it
Am to see Oncologist again in 2 months - if I’m still having problems then he’s offered to refer me for a Oophorectomy (removal of ovaries) so that I can go on Arimidex (an Aromatase Inhibitor for post menopausal women). I scored 8/8 ER so hormone therapy is necessary. Of course there’s no guarantee that I wouldn’t get side effects from Arimidex …
Am flushing badly as I type this Grrrrrr!! And am fed up to the back teeth of ‘well meaning’ non BCer people and their poxy platitudes!!
Thats it… rant over! Wish the flushing was tho!! Phew its flipping hot!!!
Hugs to all of us lovely ladies
Lozza xx 