Tolerating Oestrogen blockers

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I’m really struggling right now on Exemestane. Letrozole caused immediate intense headaches and it was stopped after only 5 days. I had a few weeks break then started Exemestane 8 months ago. At first, all I had was hot flushes & that didn’t really bother me too much. But gradually, other effects have built up. Joint pains ( made worse because I have Rh arthritis) deep bone pains in arms & legs that is not relieved with analgesia, not sleeping without medication, general malaise ( I think bordering on depression). My bone can also disclosed osteoporosis so this will likely deteriorate too. I just am not functioning well and I can’t face the thought of feeling like this for 5-10 years. I’ve had a good talk with my husband and he’s encouraging me to talk to my breast team this week about how I feel. But I’m conflicted. I don’t want to take any risk re recurrence but is it really worth feeling like this? I feel like the joy has gone from my life and that makes me sad because I have a lovely life, I idolise my family and have great friends. Have others taken the decision to stop their medication? ( I’m not saying I have made the decision, I’ll be guided by my team, but it’s difficult isn’t it?

  • Hello TJGS,  I can only imagine how difficult it is to be 42 and dealing with these drugs.  I was 72 when I started Anastrazole and have 2 more years to go as I was on the 5 year plan.  My cancer was 100% ER and PR positive.  
    All the positive lifestyle changes are certainly beneficial but they cannot replace the specific targeted medications.  Since you are young too with a small child I know it is challenging.

    There is a YouTube channel called Menopause and Cancer with Dani Binnington and her guests are wonderful and so many issues you are wondering about are discussed.  The guests are all experts in their fields.Dr Liz O’ Riordan is wonderful too.  
    hugs to you.

    Barbara 

  • Hi TJ. I’m the original poster. I won’t attempt to advise you on this as you should talk it over with your breast team. I was anxious about having that conversation but they couldn’t have been more helpful. They encounter this same dilemma every day. In my case I wasn’t +++ . I was ++-  My prediction score was 1% recurrance over 5 years if taking AI & 2% if not. BUT, I felt so bad with all the side effects that I decided that I didn’t want to feel like that for 5 yrs. So I stopped 11 months ago & I feel much better. No joint pains, carpal tunnel almost gone, fatigue improved ( not gone, but I’m 72 & have had other issues) . The debilitating anxiety has  very much reduced although I do still get periods of it ( I think anyone with a cancer diagnosis does). The bottom line is that for me, it was the right decision. Yes, it increased my recurrence chances but only marginally & who’s to know what’s around the corner. I’m living for today. Discuss this with family first, then your breast team, but ultimately it’s your decision.. Good luck. 

  • Hi all, I’m another Anastrozole pill  popper! It’s definitely a difficult and very individual decision, whether to continue with hormone treatments when you have debilitating side effects. I feel lucky that I’m now retired as for me this makes the side effects a lot easier to deal with. 
    I wanted to pop into this thread as there have been references to recurrence rates. Just wanted to check whether the rates being posted are from using the Predict tool? If so, my understanding (and I’m not a medic) is that this tool gives predicted survival rates, not recurrence rates. I believe that the gains regarding recurrence, of taking hormone therapy, are considerably higher than simply for survival. Getting facts and figures re recurrence is much harder, I’ve found, than for survival. But trying to reduce the risk of recurrence is important to me so I’ve tried to find out what I can. I’m not going to quote figures as I’m not sure! But if you search for information on recurrence and hormone therapy, there are some studies out there. Just not as easy to find as info on survival. I feel the two are sometimes confused here, and certainly the only figures given to me by my oncologist or breast surgeon related to survival. 
    Wishing everyone well with these difficult decisions, love and hugs, HFxx 

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • This has been the challenge for me re recurrence rates v survival. 
    From papers I’ve found, anastrozole gives a further 3% reduction in recurrence compared to tamoxifen alone in the study. 
    I plan to go back to ovary suppression and tamoxifen as I had much more manageable side effects. And then try an AI again in 12 months once I’ve recovered from all the chemo, immune therapy and surgery a bit more. 

    I just wish it was easier to make these decisions without the crippling fear of ‘what if’ 

  • Ah that’s interesting, didn’t know these figures re different combinations. I was definitely post menopausal at diagnosis (59) so none of that was discussed. And yes it’s such a challenge finding stuff out. 
    I really feel for you as you’re so much younger. I also don’t think that some of the medics realise how debilitating the side effects can be. I think Liz Oriardan has been mentioned here - as a breast surgeon who got cancer herself, she has been very honest as to what an eye opener it has been to be experiencing the treatments first hand.

    I will just tag someone who used to post here (and may still but I’ve missed the posts) - as she was often posting really useful research from reliable sources. Hope you don’t mind  . Xx

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Hello,  if you don’t tolerate the AI’s how about switching to tamoxifen?  
    Just a thought.  

    Barbara 

  • My plan is to go back on Tamoxifen with Ovary suppression. Studies show it gives greater protection that Tamoxifen alone. 
    Plus once menopausal I can have zoledronic acid for additional layer of protection. 
    My oncologist has said each treatment gives single figure benefits but when we layer them we see real gains

  • Sounds like a very smart decision and evidence based.  We really have to keep on pushing for ourselves and makes changes as needed.  Hope you feel better soon.

    Barbara