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ChristineIkon's avatar
ChristineIkon
Member
12 years ago

Struggling with Tamoxifen side effects

Hi All ,

My name is Christine, I have been on Tamoxifen now for 2 years and have always struggled with the side effects of Tamoxifen...I get them all!

I have had 1 breast removed after being diagnosed for a second time with breast cancer 2 years ago.The first time 10 years ago I underwent radiotherapy ... I'm 48 yrs old.

I am struggling with:

  • Hot flushes
  • Aching legs
  • Struggle to keep weight off no matter how much exercise i do
  • moodiness
  • loss of libido
  • fuzzy headaches
  • generally changed me to feeling crap daily
  • Interrupted sleeping patterns
  • Constantly going to toilet

I have spoken to my doctor who suggested anti-depressants which helps with the hot flushes but i am reluctant to take them due to other side effects.

I have suggested stopping Tamoxifen to my doctor who advised it would reduce my life span by 2-3%.

I have a friend in a similar position as mine and she stopped them with no issues to date (8 years) and is urging me to stop.

Does anyone suggest alternatives or make comment if stopping Tamoxifen is irresponsible?

Any help or suggestions are much appreciated. It is really affecting my life, my personality, my thinking and made me a completey different person .. I was once strong physically, mentally and spiritually ......its also affecting my husband..anything he can take?..lol

Christine xx

emotions
side-effects
tamoxifen

16 Replies

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  • pinklady71's avatar
    pinklady71
    Member
    2 months ago
    I had to go off tarmoxifen,after being on the drug from a week,I was shivering cold non stop , headache, dizziness,no energy , dry mouth ,peeing lots
    like I had COVID .went to BRICC and heard from the oncologist and he told me to go off it .The side affects have now stopped since going off the drg
  • ChristineIkon's avatar
    ChristineIkon
    Member
    12 years ago

    Thanks for everyones response , and yes I do feel worn out .

     

    I am in pre-menapause . Im just after some natural alternatives and what peoples thoughts on not taking Tamoxifen.

     

    keeping my spirits up is the key and i exercise daily hwoever it does get difficult when everything aches.

     

    bets wishes to all xxx

    xxooo

  • mona63's avatar
    mona63
    Member
    12 years ago

    Sorry having a difficult time--only suggestions ive got

    i work on my atitude as i feel that might impact--im  going to make this medication work for me; and the other one is regular injections so dont want that 

    exercise every day if possible

    take in  am with food

    effexor is helpful with some s/effects 

    best wishes

  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago
    I am sorry to hear that Tamoxifen is affecting you this way.What a struggle for you.I took my first Tamoxifen tablet last night!.Of course I'm hoping that I won't suffer with bad side effects.Are you officially in menopause yet?I am,so after 2 years,I will be switching to an Aromatase Inhibitor,to try and lessen the Tamoxifen side effects.Perhaps this would be an option,if you are in menopause?I worry about putting on weight also.I am a bit of an exercise nut,so I hope that I won't have this problem.I suppose too Christine,that after 2 years you are pretty worn down by all these side effects.I am sorry that I can't be of more help,and I can only hope that other ladies with similar experience might have some suggestions for you.Sending you a big cyber hug!!! xoxo Robyn
  • Nur2014's avatar
    Nur2014
    Member
    12 years ago

    I'm having my first oncologist appointment on 17 Jan. I was told that most likely I have to take Tamoxifen. I am not keen because of the rare but increased risk of womb cancer is a known side effect of taking tamoxifen and a high chance of bringing in menopause. But I feel I have no other choice.

    There seem to be better drug Estriol and Frenretinide but compare to Tamoxifen they are very new and not being use for breast cancer hormonal therapy.

    I wish I have the choice to take them instead!!!! :(

    Tamoxifen seem to be better for those who already had their menopause?

    SOME INFORMATION ON FENRENTINIDE AND SIDE EFFECTS OF TAMOXIFEN BOTH IN THE SHORT AND LONG RUN.

     http://clincancerres.aacrjournals.org/content/9/5/1877

     Cyclin D1 Overexpression Sensitizes Breast Cancer Cells to Fenretinide 

    and on Tamoxifen side effect   http://all-natural.com/tamox.html