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Tamoxifen Anyone had all these side effects mentioned ?

suziesuze
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Hi not started the drugs yet as waiting for Radio Therapy date  3weeks solid treatment and then they have said the hormone treatment Tamoxifen after. I am quite concerned as everywhere i have read said 5 years on them but they have gone straight in at 10 Years !! i do not like the idea of putting all them chemicals in my body as it is. I had lobular cancer and a 4cm lump removed with a lumpectomy and Monday thankfully told from the USA gene test that I would not benefit from Chemo.

I am really concerned about these side effects. especially the weight gain and a poss link to them also getting cancer down below women bits !! to mention just 2. seems that I am going to be fighting off one cancer and in that might lend up inflicting myself with another. I also have IBS so my tum really does not cope well with meds. Had a nightmare on the antibiotics as spend 3 weeks on the loo and lost half stone and my appitite. ( still not really right ! even off my wine !)

Any advise on this recomended drug would be appriciated. I have also been told im Peri menopausal already. ( had the hot flushes not keen that is another side effect that was bad enough last year coping with that and v embarrasing) 

 

Suzie

  • Hi Suzie, 

    I hope that the radiotherapy is going smoothly. On a positive note these few weeks give you a chance to think about the treatment you have been offered and to discuss your concerns with your Dr/Nurse. 

    We do have some information available on our website about Tamoxifen including a section on possible side effects. 

    If you feel you'd like to discuss your concerns and questions with one of our team of nurses then they are available Monday to Friday 9am to 5pm on 0808 800 4040 (free to call from a UK landline). They may also be to help with some advice on how to manage any side effects. 

    Do keep in touch Suzie and let us know what you decide. 

    Sending our best wishes, 
    Jenn
    Cancer Chat moderator

  • Offline in reply to Moderator Jenn

    HI Jen, My Radio T has not started yet. I had an infection and its been 25 days or so since the lumpectomy and infection finally gone but still painful.

    I go to the Hosp again on Monday and I think they will give me a date for the Radio T then and to discuss the Drugs. The 10 year thing is really bothering me. why dont they offer 5 years with a review ? i feel quite upset at putting those chemicals in my body for 5 years. Really anti medication really.

     

    Suzie

  • Offline in reply to suziesuze

    Hi Suzie 

    Ive been told I will need to be on Tamoxifen for 10yrs also and I hate the thought of it the same as you. Ive been taking it for just over 4 weeks so far maybe a little longer and the only side effects ive noticed have been "tamoxifen belly" (big belly fat) and also just feeling a little hot and cold sometimes but definately no sweats or anything else.

    Im seeing my doctor next week and will be discussing my situation with her about the tablets too.

     

    Aysia x

  • Offline in reply to Aysia

    Hi Suzie.  I have been taking Tamoxifen since November 2015.  I feel that I have been gaining a little bit of weight, but it feels like fluid retention as though you are about to get your period.  I do get a few hot sweats but nothing that is unbearable.  I take the tablet last thing at night and it does not affect my sleeping.  I keep a note of my cycle so as to ensure I know it is regular and there is nothing going on inbetween cycles as I read about the possible issues that can arise.  Another thing I am concerned about is my eye-sight.  Am not sure whether it's my age or the tablets, but I really feel my eye-sight has deteriorated slightly.  I had an eye test in March - just 15 months after my previous one as I was worried.  There was a change in my vision but the optician believes it is due to my age (mid 40's) and should even itself out.  Haven't noticed my hair thinning, I think it may have become a little bit harsh or coarse, but it's not an issue.  I hope you get on with them.  I didn't like the thought of taking tablets as putting chemicals into my body is not something I want to do.  But it is a small price to pay to hopefully stay safe and for the cancer not to return.  Going back for my 1st year scan in about a month so will mention my eyesight to them and see what they say.  Good luck with everything.  You get through it all somehow -after a few months you cannot believe that you have gone through what you have and experienced. Take care xxxxx

  • Offline in reply to Aysia

    Thanks for the reply. Just lost a stone frm stress of op and diagnoises not keen to get a bloated tum like you either.i have ibs too which makes me concerned. Suzie 

  • Offline in reply to bernienb

    HI BERNI. IM so stressed out about the side effects of the tablets they want me to take and lenght of time. I am going back to docs nxt week as im concerned to know where i am with my hormonal state as i believe i have gone through menopause last year (44) but early but my mum waa 38. It was enough for docs to put. Me on hrt!  If im correct Tamoxifen is supose to be for women who have not had the monopause and laprozle is the other one for women who have The doc was quite insistant "you need tamoxifen" it makes me wonder if this being around for 20 years is just the cheaper long term drug!! The side effects do bother me. Not keen on the idea of weight gain or hair thining or upset stomach for the next ten years.and the risk of cervical cancer links either... Suzie.

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