Letrozole and it’s affect on my bidy

FormerMember
FormerMember
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Hi, not posted on here since finishing my treatment back in July 2018 to treat my HER2 aggressive breast cancer, 7 lots of chemotherapy followed by a mastectomy.  I’m suffering from horrendous joint and back pain, my wrists are often swollen and painful, my back, hips and legs constantly painful and if I stay still for too long am unable to move properly due to severe pain. I fear the worst with every  ache but have  been assured it’s not the cancer returning but possibly down to menopause, possibly fibromyalgia but I still maintain it all started when I went onto tamoxifen and then letrozole, just wondering if anyone else is suffering, I’m 52 but my body reactions are the same as my 80 year old mothers.
feeling tired and miserable but also lucky to be out of treatment

  • FormerMember
    FormerMember

    Hi

    I having treatment for ER+ DCIS and Invasive cancer.  I've had surgery, lumpectomy, then further surgery to take more tissue to get acceptable border, plus sentinel lymph node biopsy (2 nodes removed but clear, fortunately) as Invasive cells found in first histology of tissue removed.

    I'm now waiting for Planning (20 April) and then Radiotherapy, starting 4 May for 3 weeks / 15 sessions

    At my last clinic appt, I was prescribed Letrozole, to start straight away.  I had breast cancer, lobular invasive on the other side (Right) 9 yrs ago, had lumpectomy, Radiotherapy and Tamoxifen, later changing to Anastrozole due to joint pains (which didn't improve with the Anaztrozole).  I eventually stopped these oestrogen blockers because the side effects of joint stiffness and pain were impacting on my life.  The benefit of taking these meds was estimated at only 2% so I didn't fell it was worth the problems at all.

    As I say, I'm now on Letrozole and have taken the grand total of 11 tablets (1 daily) but have actually decided not to take any more for now.  My knees, fingers, shoulders and neck have got rather painful already.  In addition, I've still got limited range of movement in my left shoulder since dislocating it last year but also had nerve damage which has taken roughly 6 months to heal, ie by mid-Jan 2021.  As a result, my left shoulder is very stiff at the more extreme ranges, particularly limited on external rotation.  I've been working hard on getting more movement in shoulder so I can get as near to getting my hands above my head, with elbow back, for radiotherapy.  I feel that, since taking these Letrozole, both my shoulders are stiff and painful and threre's no way I'll manage to get my arm into the desired position, as things are at the moment.  In fact, I am not able to move it as well as I was a few weeks ago!!!  So, for that reason, I've decided to leave off the Letrozole until I've finished RT (assuming that I'm able to have RT with such a stiff shoulder)

    I also suffer from depression (severely, at times) although on antidepressants.  I've recently felt incredibly irritable (not like me at all), tearful, depressed, no motivation, joint and muscle pain/stiffness etc, all of which are listed side effects.  I can't see how I'll manage these meds at all, let alone for 5 yrs! 

    So, yes, I sympathise, and empathize, with you.  If you can take anti inflammatory meds, they with Paracetamol can be very effective so defnitely worth a try.  Unfortunately, I can't take anti inflammatory meds!!!

    If you are really struggling with side effects, it would be worth dscussing with your BCN and maybe get changed to an alternative.  I really wish you all the best, both for a good future free of cancer and only minimal side effects from these oestrogen-blockers ;)