Changing hormone therapy

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Hi, I was diagnosed on 10 March 2022 and was put straight on to letrazole (they knew that the surgery would be delayed because I needed a lot of investigations prior to surgery)

I’ve found the side effects of letrazole very difficult to cope with - nausea, loss of appetite, fatigue, hot flushes, insomnia. The team were reluctant to accept that these were side effects of the letrazole (at least that’s how it felt to me) and were quite keen to put a lot of it down to anxiety because of all the investigations, the surgery, radiotherapy etc. 

Anyway having finished all of the above, 4 months in they have now suggested stopping letrazole for a few weeks to see if my symptoms improve and then moving to exemestane instead.

its 2 weeks since I last had a letrazole - oh my goodness, the difference in me! I’m eating, sleeping, exercising, no hot flushes in fact I feel like I did back on 9 March. 

(I  do feel vindicated - I knew it was the tablets, not my head!)

I’m rather dreading going back onto hormone tablets - I know they are different and that the side effects are potential etc etc and that I need to keep positive and wait and see, I might not even get any side effects etc. I do know all that -  I just need to tell people  who understand (that’s you) how much im dreading it. It’s rather spoiling this few weeks of normality and I really want to enjoy them. 

thanks for listening Blush

  • Hello,  I certainly believe you as the body doesn’t like to be so low on estrogen.  I did read that letrozole depleted estrogen more than anastrazole but not sure about the exemestane.  We are all different and sometimes it is trial and error to see what works.    I miss my hrt  but those days are in the past as am ER and PR positive.  I am doing ok on anastrazole but feel warmer, have severe dry mouth at night,  fatigue occasionally but overall ok.  Have been on it for about 4 months.  Good luck and enjoy the break.  
    Barbara

    Barbara 

  • I know just how you feel after a year on letrozole with all the above side effects. I changed to Anastrozole   Just couldn’t cope. Even worse.  Seeing my consultant on 22  nd aug to change yet again. See what he has to say.   People who have never taken this drug will never understand how it makes you feel !!!!!!! 

  • You’re absolutely right there. And to be honest when they said take these for five years I kind of shrugged and thought fine. I’d no idea how much they would change my life! 

    I have heard of anastrazole but hadn’t come across exemestane and I don’t know why they have recommended it instead Shrug♀️

    I have a call in with the breast care nurse but we keep missing each other - I have quite a few questions about exemestane 

  •  Hi, 

    I changed from Letrozole to exemestane and was even given the brand name Aromasin.  It was marginally better initially but I am not so sure now. I am in my early 70s and had some osteoarthritis before Cancer. Interestingly probably due to all the steroids given during treatment it virtually went away but is back now with a vengeance. I recently had feet X-rays and ultrasound and have worsened arthritis in my subtalar joint and additional arthritis generally in both ankles. Also a few other feet problems. I am awaiting steroid injections and I have also been given specially made boots which help a little (well a lot as I couldn't find shoes with a wide enough toe box to accommodate my swollen toes). I have recently found walking extremely difficult and exercise which I was doing has decreased. The trouble is it is difficult to know how much is down to age and original condition and how much to exemestane. I have less pain in my hands now than when on letrozole and my upper body is fine. 

    I think the worse thing about the letrozole was the immediate weight gain. I haven't added very much to this on the exemestane but I equally haven't been able to lose any. The weight of course impacts adversely on all the other conditions. 

    I am about to get  estriol0.01% cream for my vagina because I have some urinary problems which in part result from a prolapse of the bladder caused by thinning skin, caused in part by lack of oestrogen in this area. There is a slight risk from this very marginal estrogen addition but most research seems to think it is ok.

    Not sure how much this helps you. I would say it is worth a try. If you look at my profile you will see a section on current problems. I am pretty much the same except that osteoarthritis is worse. when I was looking to change from letrozole I seem to remember my research indicating that exemestane is slightly kinder than anastrozole.

    Best of luck would like to hear you get on. Xx

  • Thanks - I’ll have to wait and see I suppose. I have a long standing hip injury which has ‘become’ osteoarthritis. I’ve had steroid injections but they don’t last long. I find I have to balance the exercise - enough to get rid of the very variable pain in my hands knees and ankles from the letrazole, but not so much that I’m in agony with my hip… 

    I haven’t seen that it’s kinder (do you mean fewer side effects?) but it is different - anastrazole and letrazole are non steroidal, reversible and exemestane is steroidal and irreversible - so different but I have no idea what irreversible means in this particular pharmacological context. It’s one of my questions for the nurse next week. 

  • Hi Runner. Could tamoxifen be an option for you? I was on anastrazole for 5 months and was throughly miserable and unable to sleep a wink. Despite being post menopause the oncologist  switched me to tamoxifen, never even mentioned the other inhibitors. Tamoxifen took a bit of getting used to ( had horrible mood swings in the first three months) but sleep improved immediately and now nine months down the line I feel fine other than for occasional hot flush and foot cramps. Hope you get sorted 

  • Another of my questions is what criteria they use to choose which drug Joy  There doesn’t appear to be any rhyme or reason for choosing one over the other 

    Tamoxifen is on the cards if the exemestane doesn’t suit me, but why I’ve leap frogged anastrazole I have no idea 

    She did explain why tamoxifen is last in the pecking order but I can’t remember why now 

    I have been referred for acupuncture for the hot flushes which sounds interesting (the alternative was more drugs with more side effects) the hot flushes are no longer at the moment, but there’s quite a wait for acupuncture so I expect I will get an appointment if I need it when I am on exemestane 

  • It was pretty subjective, overall I found fewer people complaining about arthritic problems than those on anastrozole but it is a while back and I can't remember properly. I have tried to find out what exactly the difference is between non-steroidal, reversible and steroidal and irreversible but can't seem to find a straightforward answer that I can follow. Most just say they are equally effective which is not what I want to know. If you get an answer from your oncologist please share it. My treatment came to end during covid and all my consultations with regard to aromatase inhibitors were done over the phone and I never really felt I was able to ask or have effective discussions. It was also complicated by them initially forgetting to put me on any aromatase drug, it only came up when my daughter asked if all my tumours were being dealt with.  After saying of course the surgeon (who was telling me because of covid my mastectomy was on hold) suddenly said words to the effect of "Oh no, wait a minute, well spotted, one of your tumours is oestrogen positive." 

    Please keep me posted it sounds as if we have quite a bit in common. Certainly, for me, the very worst pain and debilitating effect on my life is the increase in joint pain, osteoarthritis. 

    xx

  • Hi. Can I jump in on this thread and ask all of you above, did you have a hormone therapy chat with your breast care team before taking these drugs or injections?

  • i count myself lucky then,i have the hot flushes and feel tired but once ime out in the garden the tiredness thankfully goes,dreading being stuck inside autumn and winter though.

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