Examastene

Hi Norberte

I’ve found that Exemestane suits me much better than Letrozole. I haven’t had water retention with either but I’m very tired on Exemestane, more tired than I’ve been on either Tamox of Letrozole. I mentioned it to my BC and she said that I’d ‘just have to go with it’. Out of the side effects I’ve had over all it’s the easiest to manage to be honest.

The other thing is that if I wake up around 3.30am to 4.30am I feel absolutely at rock bottom, way beyond what I would call feeling down. If I sleep through that period then I’m fine and I’m OK during the day. This has got to be something to do with Exemestane. I take mine in the morning with my breakfast. Just a thought if you get that sort of problem.

Best of luck with Exemestane. My onc told me that it was the best out of all the AI’s with the least side effects.

Jan xx

hi jan,

Glad all is still going well with the exemastane, i was comforted to hear that you have the same problem as me with tiredness, because most report that exemastane is kinder than the other AI s . I am coping with it- and the aches and pains and it does not stop me from doing anything but i have to be more organised i cannot just get up and go .

hugs
x

Hi charhie

I know what you mean I have to organise myself too. My aches and pains went off eventually. Sometimes in the morning I had to shuffle downstairs on my bottom but that seems to have gone away now, fingers crossed, and I’m back to normal as far as joint stiffness is concerned. It’s really just tiredness and this awful extreme depression in the early hours. I’ve managed to sleep through it for the last few nights.

I’ve been taking Exemestane since last September how long have you been on it for?

J xx

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Norberte - just to reassure you, I find I am fine on Exemestane. Maybe I am lucky but it doesn’t cause me any fatigue. As I’ve said before I have been able to lose lots of weight and I have much more energy (probably because I an carrying around 3 stone less than I used to!) I didn’t do so well on Arimidex and my doctor suggested that I change to Exemestane. Hopefully you will also find this one suits you better than Letrozole.
All the best
Anne

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hi, yes been on exemastane now for 16 months, i do have to be honest and say i felt better when on tamoxifen but as most of the reports are so favourable of exemastane i am determined not to give up on it, everyone is different .

Hi
I agree with you Charhie, I will move heaven and earth to stay on Aromasin, I just couldn’t not, feel that there’s too much at stake.

Feel the side effects are worse than Tam, however seems that EX has better results than Tam for keeping cancer at bay…so have to grit my teeth and go for it… So far fatigue and hot flushes have been the worst…concentration is appalling.
Bobbie

Please tell me this awful fatigue wears off as my body gets used to Examastene or vice versa
Bobbie

hi, I am not sure if it gets any better, but i have found i have learnt to accept it and adjust things, if the tiredness sweeps over me i stop what i am doing and have a tiny break, and yes there are good days when i think " oh great back to normal " then i come down with a bit of a bump, so i plod on and take each day as it comes and although it can be annoying ,i do cope.

Annie

hi,im not sure the it gets better, but i think you just learn to live with it. i find the side effects of exemestene are far better than those i had with tamoxifen… now when i feel exausted i sleep for a few hrs… some days i think whey great im feeling fantastic… and others im just washed out…

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Hi

I’ve found Exemestane the best. I’ve had Tamox and Letrozole. I too have times when I feel great and then Exem comes and bites my bum and I feel tired and fed up. I haven’t had as many hot flushes on Exem though. Tamox I just had one hot flush which never stopped!!

I think we have to accept that whatever we take we are going to get side effects. In my experience if the side effects are too bad to live with then the onc is only too happy to change it for something else.

Good luck Norberte, take the plunge and get ‘em down yer’.

J

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Just a query. My understanding is that Examastene is a steroidal Aromotase Inhibitor, whereas Letrozole/Femera is a non-steroidal AI. I was also under the impression that as it is an AI, it is only suitable for post-menopausal women, and is usually prescribed for those when Letrozole has failed. I’m just a bit confused because people above seem to be talking about going straight from Tamoxifen to Examastene, could someone clarify please?.

Hi Lemongrove

Not sure about steroidal/non-steroidal. But there is research evidence that for post menopausal women 2 years tam followed by 3 years AI gives improved disease free survival. You have to be post menopausal for the AI. For pre menopausal women they are recommended 5 years on Tamoxifen.

I have just been switched from Exemestane to Letrozole - my cancer recurred while in year 3 of Exemestance (after 2 of Tamoxifen)

K

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Hi Norberte

I found it very difficult to shift any weight on either tamoxifen or exemestane! Was hoping Letrozole might be different - but not holding my breath!!!

K

Hi Kmans/all, I know there is a bit of a debate about survival advantage, over SERM’s versus AI’s, but that’s not really why I raised the question.
I have a particular understanding of how Exemestane/Aromasin works, and I’m surprised that women appear to be going straight from Tamoxifen to Exemestane. I am also surpised that others are going from Exemestane to Letrozole - and I will explain why
Firstly, it’s true that for post-menopausal women with oestrogen receptive BC, doctors prefer AI’s like Letrozole rather than SERM’s like Tamoxifen, because most oestrogen in post menopausal women is created via aromatization. However, because of the way Exemestane works it is seems quite a large leap to go from Tamoxifen to Exemestane, and illogical to go from Exemestane to Letrozole … because:
This is how Wikipedia describe Exemestane:
“Exemestane is an irreversible, steroidal aromatase inactivator, structurally related to the natural substrate androstenedione. It acts as a false substrate for the aromatase enzyme, and is processed to an intermediate that binds irreversibly to the active site of the enzyme causing its inactivation, an effect also known as “suicide inhibition.” In other words, Exemestane, by being structurally similar to the target of the enzymes, permanently binds to those enzymes, thereby preventing them from ever completing their task of converting androgens into estrogens”.
To me this suggests that Exemestane does what Letrozole does, except that the effects of Letrozole are reversible. So the questions I have are
(1) Given that Exemestane is irreversible (and steroidal), would it not be more sensible to try Letrozole before Exemestane?
(2) As Exemestane does what Letrozole does, but in a more permanent way, what is the sense of prescribing Exemestane before Letrozole?.
Sorry if these questions seem odd, but to me, the analogy would be that it’s a bit like going from an NSAI type pain killer like Aspirin, to a perception altering drug like Morphine, back to Panadol.
Maybe I’m completely ignorant, so I would appreciate information please.