Well today I had the dreaded appointment where I informed the consultant that I had stopped taking Letrozole due to the side effects. I was given the talk about although I am low risk, the drugs would stop it recurring. I have changed my diet, become virtually alcohol free and have so far lost a stone in weight since the surgery. I have cut out dairy and am taking calcium enhanced dairy free alternatives.
the upshot is they were not happy at all with me stopping. Other inhibitors were mentioned. Exemestane and Anastrozole. They also said that despite being post menopausal I could take Tamoxifen if I am unable to tolerate the other drugs. My dexa scan showed that I have excellent bone density.
My questions is what do you all think? I thought Exemestane was non reversible. I asked about Femara as recommended by someone from BCC. Really in a quandary as I don’t want to feel crap but also don’t want to put myself at risk now the fear of God has been put into me but the Consultant.
I too am on Letozole and am having side effects. None I feel I can’t handle at the moment but who knows. That said I have just come back from a gynae appoinment so we’ll see.
I am not medically trained and don’t want to ifluence you in any way but just wanted to say something about a friend of mine. She was diagnosed last November the same time as me but couldn’t been operated on due to the tumour being too close to the chest bone. She was given Letozole as the only option. She has been monitored at the hospital for months and the tumour is shrinking. I actually saw her yesterday and the tumour has shrunk by 50%. She and and the medical staff are over the moon.
It’s a very hard/difficult decision but think about it carefully and hopefully you’ll reach the right decision for yourself.
My understanding is that Letrozole and Anastrozole have similar mechanisms and Exemestane is a little different.
This is from the Lancet:
Aromatase inhibitors are the preferred treatment for postmenopausal patients with hormone receptor-positive early breast cancer.
Third-generation aromatase inhibitors exist in two classes with different modes of action: reversible binding of the aromatase enzyme by the non-steroidal aromatase inhibitors anastrazole and letrozole, and irreversible inhibition of the enzyme by the steroidal aromatase inhibitor exemestane.
There is a paper in Science Direct entitled: ‘Exemestane, a new steroidal aromatase inhibitor of clinical relevance’ which explains the significance of irreversible inhibition, but it’s quite lengthy.
Hello,
You seem to be saying that based on medical advice, you now think you should take some form of anti oestrogen treatment to try and prevent recurrence (no one can guarantee that it will work).
So why not try another treatment and if necessary work your way through to find the best for you. And if you really can’t stomach any of them, should the risks spercede the benefits in your opinion, then you can say you gave it a good shot.
In the end, whatever med staff say or advise, it is your decision.
Apparantly, flaxseed is an oestrogen inhibitor - don’t take my word - do your own research. I read that St Johns Wort, Carbamazepine and rifampicin also inhibited - last two may be somewhat extreme ?. Not sure if it is the case but apparantly grapefruit juice and some other antibios increase levels. Grapefruit juice seems to get a hard time with lots of meds. I can’t stand the stuff personally, but then I also can’t be doing with too much debating about what I should and should not eat and drink now because of BC.
Very well done on your weight loss and hope you reach a treatment resolution that you are happy with.
As the others have said, it maybe worth looking at the alternatives. I’m now post menopausal & on tamoxifen with the option to go onto anastrazole. As I’ve been fine on tamox, I have stayed on it & both the oncologist & surgeon were happy with this.
rock and hard place comes to mind. Sorry to all for sounding like I am whinging but just want the best outcome for myself but don’t want to feel so unwell with the tablets. I know that side effects are par for the course.
Hi, I have been on tamoxifen for the last 7 years and had to have a full hysterectomy in 2016, since then my symptoms especially mentally have gotten worse to the point where I have been advised to come off the Tamoxifen and goo to Letrozole, my concern is a whole new set of side effects and the thought of having something else is horrendous, I just want to feel like me again!!! I am considering not taking anything at all(it’s been 7 years). I had stage 2 cancer and no one in my family has had it befire. Any advice would be great. Thanks
Hi iklemisspink
I don’t think we can advise you, but just share our own experiences and thoughts. I’ve been on letrozole for a while, and find the side effects a challenge but doable. I haven’t had any mental issues, eg, depression, but struggle with fatigue and bone/muscle aches and pains. I have cfs anyway, so sadly the letrozole makes this worse. Having said that, I have adjusted what I can do in a day, and learnt to pace myself. Personally, I would rather take the medication than not. I couldn’t cope with the worry and stress of a possible reaccurance.
Also, I think the general advice is that ht should now be for 10 years. Why not try it and see how you get on?
I had stage 2, grade 3, no family history and was advised not to stop taking it by my oncologist.
Sue xx