Stopping Exemestase

FormerMember
FormerMember
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Hi, I gave up on Tamoxifen after awful side effects and oncologist telling me taking was not worth my physical and mental demise. Spent a really lovely 1yr + without medication and feeling wonderful, best I have felt in years. And,here we are again. Recommended for me to take Exemestase now. Have been using for five months,joint pain over and above the usual rheumatoid arthritis pain, feeling miserable and back to wearing a wig again as I am losing hair constantly.

Btw, I am 70, diagnosed breat cancer October 2018, surgical removal of lump (cancerous) then lymph node removal, no further treatment needed as lump was barely 7mm. I know I am really fortunate and that I was very lucky to have such a minor incident. But, I don't want to continue on this or any other medication. I try and think realistically about the time I may have left, I don't come from a family of long lived people, everyone gone by 75, so I really want to enjoy my time, especially after sheilding for 18months in Scotland! I have wonderful friends, a fabulous husband and I live on a Scottish island, yes it really is that good! Am I being selfish, should I just be grateful it's not worse and just grow a pair lol. Dithers struggle with this issue,? I feel guilty that my cancer was so small when I see so many brave and courageous people fighting for every day. Please, I am not afraid of being told off by any of you, so please let me know your honest feelings. Btw, my husband and closest friends are totally on board with whatever decision I make.

Thank for listening to me prattle on Blush

Chris x

  • Hi Cdfergus welcome to the forum and please don't feel guilty about anything you have been through the mill same us all just at different levels ans we never tell anyone off because the choices we have to make sometimes are not east at all.

    I m not sure why they want you back on to the medication, has something else happened in the interim.? 

  • Hi Chris

    My mum was diagnosed with ( I think  this was the  list!) DCIS , invasive DC and invasive lobular all in the same breast about 8 years ago now, at the age of  around 67. After lumpectomy and radiotherapy, she was put on tamoxifen, lasted about a month on that before side effects became too much, then exemestane for about 2 weeks before ditto and then finally Letrozole which she coped with for about 2 months before being unable to  put up with it any longer. So with her oncologist’s agreement ( same as yours re your reaction to Tamoxifen), she’s taken nothing since and so far so good.

    (it’s my turn now, being diagnosed with invasive mucinous carcinoma (I joke with mum that where she went for quantity I went for rarity) . I was on Tamoxifen for 6 months without issue and then switched to Letrozole. Ive just been told I can go back to Tamoxifen because Letrozole has sent my blood pressure and cholesterol right up.)

    so, I suppose what I’m  saying in a long winded way is , if it feels right for you then do what my mum did. 

    all the best

  • FormerMember
    FormerMember in reply to GRANNY59

    Hi granny, They want me on medication because that is the protocol for the 5yrs after diagnosis. I am at  21/2 yes. My follow up mammograms and ultrasound have all been good. I just feel as though IBlushm playing Russian roulette by choosing to not take the medicine. Thanks so much for taking the time to reply Blush

  • FormerMember
    FormerMember in reply to Mollusc

    So glad to hear your mum is doing so wellHeart exclamation️  Thank you for sharing your story, and I wish you all the best in your journey. Funnily enough, since stopping the medicine I am having massive night sweats, lol. Probably just realigning my hormones. Take care, Chris x

  • Could always be this weather of course! Yes, it probably will be your hormones adjusting

    yes, mum is doing well on this regard ( she has acquired a new list of problems with age unfortunately!) . She’s now on the usual 3 year mammogram pattern.

    Thank you for your good wishes Grinning- I feel fine on the main except for the joint aches and fatigue which I’m hoping will now wear off. 

    All the best xx