Hi, I was diagnosed with BC in September 2021.
After lumpectomy, clear margins and nodes, radiotherapy then on Tamoxifen (taken off again after 6 wks due to pain) then put on Anastrazole.
This I tolerated for 2 yrs but out of the blue my hair started to fall out badly!
This was not a side affect I was prepared to accept. I then came of Anastrazole.
I must admit I feel great!
Having recently been told of a horror story of someone else (I won’t go into detail) but it scared me and now I’ve got a phone appointment with my bc nurse to talk about starting again.
My question to you all is - which in your opinion is the best to be more tolerable- Anastrazole, Letrozole or Exemestane???
Also which brand names are again more tolerable??
Love & Hugs
CB xx
Yup, same happened to me. Thought I might get away with it in the beginning due to a very good Predict score but something happened to someone I was doing rads with who had a similar histology to me and so I swallow the horrid little pills in the hope I don’t find myself in the same situation .
I’m on Letrozole which is known to reduce the most oestrogen out of the three types. I have linked a paper which answers your question. If you can’t be bothered to read through all of it (who could blame you?) zip down to the conclusion at the bottom. Exemestane is a steroidal AI and is used in specific circs I believe. As to brand, it’s so personal. I have Accord on my repeat prescription and I usually get it but I’ve read on here that some people don’t do so well on it. It’s probably a suck it and see.
Differences between the non-steroidal aromatase inhibitors anastrozole and letrozole – of clinical importance? - PMC.
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I hate reading some of these comments because I made the decision not to take Tamoxifen and take my chances & obviously don’t know if it was the right decision. I’m 76 so it’s probably an easier decision than someone who is much younger & had I been younger I’m sure I would have taken the oestrogen blockers. I’m aware the cancer can return as secondary cancer, but some people have had it return when taking blockers, I just can’t face any of the side effects & not knowing what it is doing to my body long term. It hasn’t been an easy decision & I’m anxious all the time about a recurrence, but for me personally I decided to go for quality of life, as apart from the cancer I am fit & healthy. I hope you find the right medication that you can tolerate.
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@Tigress as I’m struggling with S/E of Letrozole and was seriously considering coming off it that article has made me decide to stay with it, thank you.
@country_bumpkin its not an easy decision but there are lots of people on AIs who have no side effects at all, hopefully you will be one of them.
Eeeek @nannabee I try very hard not to influence anyone to pursue a form of treatment or not pursue a form of treatment - if the literature has helped then I’m glad as long as you’re sure.
My er+ score was 8/8 and Letrozole is just made for that but I have a neurological condition which impacts QoL and I’m still not sure if Letrozole makes it worse or not. I keep telling myself I can stop the Let tomorrow if I want - I have had a couple of breaks from it - but, so far, each day is one on which I have consciously elected to take it and therefore feel a bit more in control. Good luck to you.
One reason that has stopped me from restarting Anastrozole was that the first few weeks on it before the joints pains started were awful. At least 2 hot flushes every hour accompanied by a thumping pounding heart that was really scary and then going to the GP for an ECG . On top of that I was bursting into tears all the time and not able to remember anything from one second to the next . Those symptoms did settle down but anyone but it really puts me off any ideas I might have about restarting any therapy , luckily enough my personal circumstances mean that I have the backing of the breast team which made it an easier choice to stop - I would have tried harder to continue if my circumstances were different . For anyone reading this who hasn’t already read it I do have a friend who didn’t tolerate Letrozole but has managed to continue AI by switching to Exemestane . Xx
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Hi @Tigress , I’m also er 8/8 which to be honest I haven’t got a clue what that means. Don’t worry you aren’t influencing me and I also took a week off of Letrozole last week. I did it for two reasons, one I needed a break and two I wanted to make sure it was that that was causing the side effects. I also have lupus which gives me severe fatigue, joint pain, brain fog, hair loss etc etc and the Letrozole is just making those worse. At the moment I’m on Sun which seems to effect me the least of the four brands they’ve given me in six months but I’m having to fight for each prescription as the pharmacy just want to give you any old brand. I even asked my gp for a two month prescription this time thinking at least I’d get two packs of one brand - no two different brands for one prescription, I give up. I’m going to speak to my surgeon at my one year review in November but for now I am coping.
Wishing you a peaceful and happy bank holiday, stay strong and keep posting, I often think about you and hope you are good.
xx
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It just means @nannabee that your tumour was 100% receptive to oestrogen and therefore the obliteration of oestrogen means any cancer cells lurking about can’t feed and grow. So any drug that reduces oestrogen, and Letrozole would seem to be the best for that in post-menopausal women who can tolerate it, will keep recurrence at bay. Unfortunately it’s this reduction in oestrogen that causes the side effects. For those of us with co-morbidities it just means we don’t know completely how much the endocrine treatment is to blame. Anyhoo, when I’ve taken my breaks (6 weeks one year and 8 another I think) the side effects went away reasonably quickly so it won’t always be like this. As for the brands, I was given Sun to start with and was fine on it but the oncologist said to the GP that she should put one brand on the repeat prescription and recommended Accord, so that’s what I mainly get. Unfortunately it would seem that pharmacies are at the mercy of drug wholesalers who are given incentives by the pharma companies month to month so sometimes our preferred brand isn’t available to the pharmacies. Good luck with getting Sun, I find it helps to have the confidence that we’re taking the tablet of our choosing. Big hugs for a lovely weekend back.
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Hi
I was so glad that I am not the only one having trouble.
I had a diagnose in December of 2022. I have had a lumpectomy and Radiotherapy. I started with Anastrozole which made me feel like killing someone. Then on to Tamoxifen which caused a terrible rash. Then on to Letrazole but I have just come off due to severe fatigue. I’m going to give Anastrozole another go but I don’t feel positive.
I hadn’t realised the horizons therapy would be quite so difficult in terms of the side effects.
Is it just a case of putting up with it?