Hi suziesuze, 

I'm sorry you're having such a tough time with the tamoxifen. Are your medical team aware of all the side effects you are experiencing and are there any alternatives you could switch to if that is an option available to you? I see you mentioned you had an appointment today with the oncologist. How did it go? 

I know you asked for positive messages and hopefully now that I've replied others will post soon offering their support and positivity but in the meantime try to take it a day at a time and concentrate on the good things, no matter how small they may be, that happen each day. It will make you feel better and slowly put you in a more positive frame of mind. Maybe at the end of each day you could try writing down three good things that have happened and keep that list with you to look at when you're having a tough day.

Stay strong suziesuze. You can get through this and the community are always here for you.

All the best, 

Steph, Cancer Chat Moderator

Hi Suzie

How are things going? 

My partner has also had grim side effects from different drugs, including chemo-induced menopause(and all that goes with that) and still has pretty miserable side effects now. 

I hope your oncology team are listening. I have found that in many ways our oncology team are great but  they are poor at handling drug side effects. Our hospice Doctor has been much better at this. I hope you can find someone to help you get your drug cocktail right. 

Hi Know the feeling however your oncol can change to an alternative drug which from my experience was better also found dieting did help although hard and strange as it may seem even though you feel like crap exercise Get out there enjoy yourself but treat you body like a temple fruit veg active pastimes go dancing etc the side effects will lessen. 

6 years I’ve been on it and have put on over 2 stone. Can’t sleep due to flushes plus I suffer with restless legs. It’s like doing the hockey cockey in bed quilt on quilt off feet in feet out tossing and turning. Feeling bloated all the time struggling for no2 can go 2weeks without having a poo. Stomach looks like I’m pregnant. I can’t cope anymore feeling depressed hate my body hate myself times I feel like ending it all. Why did I have to have cancer when there other people who rape steal druggies give it to them. Not too someone who is the kindest always help others. Just can’t go on anymore 

HI Rieswan

I have been on it now 3 years seems forever, I never sleep. I am not in a r ship anymore as my marriage ended before cancer 12 years ago but last 6 years had no r ship and to be honest I do not think a guy would cope with me peeing all night and tossing and turning, putting on relaxation music in the early hours to block out this f ing tinitus i now have also got and i swear its linked to the cancer diagnosis. 

Try cutting out bread for starters it really does help. have you also asked about being put on a different brand? Not sure what age you are but im 48 and i was plunged into early menopause and remember its easy to blame tomoxifin but we all get bigger as we get older and its harder to shift the LBS. middle age spread and all.

I have gone from a 12 14 to a 16 18 in clothes family say dont be silly you look the same but i know i do not. My legs are huge at the top!! im shocked i go to buy a 16 and it does not fit. it can make you depressed when your not happy with your body if like me you was always slim.

I have had very black days where I have not dressed and felt like ending it. I miss being loved and in a r ship im bored at weekends I now never go out due to all my friend re marrying so no social life. My life seems to be now selling *** on e bay and going to car boot sales with my mum cos shes lonely after loosing my dad. I long to be the person I was, fun !! sex life ! going out  ambition. 

I never smoked i was a gym bunny when kids little i home cook I rarely ate crap only drink at weekends and now i cant really do that anymore I do know how you feel..

having said all that consider this

You are STILL ALIVE some are not so lucky and are stage 4 - yes its *** tough at times, its unfair we got it. I even used to think i have like 6 close friends why did i get it and they did not ! even to the point my sister smokes and is over weight and i used to think why me and not her.. and then id feel guilty for even wishing it on someone else instead of me.

I do not have the answers only that if i took my own life I see it as the cancer won and all the treatment would of been for nothing and also my mum and my kids would never forgive me.

can I suggest a visit to the docs. I was on antidepressants for about  2 years for all of above and they did help a bit with the hot flushes. venflaxine. it helps stablize your moods too. and i should not say this but for me it kept me slimer !! for some the other way. its not a long term thing just to help you cope a  bit. I actually only stopped taking them so i could drink again if i went out lol ( which was rare ) and i just did not want to be on them and tomx for 10 years it was touch thou to get off them i will warn ( side effects)

You really should look foods that interact with Tamox im 100% sure my stomach is much better off bread, i do have some now and then i  MISS IT ! docs will prescribe peppermint oil tabs which may help. Also onions and spicy stuff i swear make it worst so a slight change in your diet might help. i eat more quorne now cos the kids like it. I find beef hard to digest.

Also check out "The honest guys" on you tube meditation it sounds *** and im not one of them hippy people but the voice and music is fantastic to help you relax to try to snatch a few hours sleep between the frigging tossing and turning.

Cotton bedding too and lots of pillows so you can turn them over for a cool one on your face and obv a fan when its getting hotter in summer ( dread!!)

Take Care you are not the only one we are all *** off its got us but I think a trip to docs is needed now even if its just a chat and a cry some are willing to help

Suzie xx

Hi ...

I had a terrible month on tamoxifen... no body told me what may happen or how my emotions were all over the place .. I was crying over everything,  and I think I'm pretty tough ... it was only on here I guessed it was caused by this tablet ... 

I started a mild anti depressant for a few weeks ... that seemed to level out the emotions while my body got used to the tablet .. since then I've had no problems .. l always take my tablet in the middle of the afternoon, and maybe that's a good time ...

I really wish they would give us a talk on what may happen on tamoxifen .. so at least we'd be more aware .... so many come on here , about these sort of tablets ... Chrissie  : ((  x

I'm sorry to read how tough the last 6 years on Tamoxifen have been for you rieswan. I hope the replies you've received have helped you feel less alone but as you're starting to mention that you are feeling depressed and can't cope or go on anymore then it may be time, as suziesuze has suggested, to discuss this with your GP.

The bank holiday weekend is always a tricky time to get out of hours support but if you feel like you need to speak to someone before you're able to get an appointment with your doctor, then the Samaritans are just a phone call away. You can call them for free on 116 123, and their lines are open 24 hours a day, 7 days a week so there is always someone who is ready to listen and do what they can to help. 

Our community are here for you rieswan.

Kind regards, 

Steph, Cancer Chat Moderator

i am so glad i googled bloating and tamoxifen. I mentioned this repeatedly at the breast clinic and the constipation and they said see my doctor! I went to the oncology clinic but didn't mention it to them as I put it down to not eating much after six bereavements and my cancer diagnosis and op all in nine months (i have been having a breakdown). Now I know it is almost certainly the tamoxifen I am going to talk to my doctor about stopping it. I have a lump come back in exactly same place under my arm only 6 month after surgery and I reckon its been there a couple of months even tho i only noticed it about a fortnight since. I am so lethargic and menopausal. I brushed it off as ok at the clinic but I should not have done. I agree with the comment of  "...at what cost..."  because I got cancer diagnosis last Jan as hubby was dying from bowel cancer (Feb). I nursed him 3 1/2 years and working full time in fast paced job. At end I spent day workin and night watching him die with very little sleep. Daughter did day shift and worked at night. Me n my lad spent most of that time in agony, in major surgery and both exhausted and miserable. Instead part of me wishes I listened to him about finishing work and enjoying a few months together instead. He desperately did not want to die and I did not want to lose him, but since then I spent almost  a year in mental and physcial pain and lonliness. NO other person/s would make up for lack of his presence or support. To the end and beyond we were still absolutely obsessed with each other and deeply in love. Even now still in physical agony and mental and emotional turmoil.I am like a petulant child in a toy shop being offered every teddy there is to replace the one I lost.  If it is back I am NOT having any more life saving stuff done. I will get the tests, but thats it. If its not back, I can't put up with the agony. The aromatase drugs have totally mashed my arthritic joints. Within months I went from being on paracetamol but able to hurry up several flights of stairs carrying heavy files to barely able to walk. My hip is bone on bone. One knee is the same. The left hip and right knee are getting there. On top of my diagnosis and loss of soulmate who i met at 15 (now in sixties), as I emerged from major surgery (it spread to my lymphs cos I waited till he died before treatment), I knew our 3 yr old Grandson would be dead too and in between losing partner and baby, two close friends died as well. After a one month gap I then lost my Uncle and nearly brother within fifteen hours of each other. Only got the kids.... one helped me nurse her Dad while trying to work n feed her own family and her brother is autistic (it was his toddler that died) and has a 17 yr old semi vegetative stepson and a 15 yr old to raise on his own. So I am on my own dealing with all this and more besides. I was told every tablet I went on was unlikely to cause issues. I believe I was not told about the guts issues and bloating cos they knew I would come off them. What is the point if not working anyway? I am beyond miserable. So close to a retirement together and bam! snatched away. I worked 47 yr and him 42 and all for NOTHING. I am very very angry because I feel the clinic have been totally dishonest with me about the Tamoxifen and if they didn't know IT IS THEIR JOB to know!