20-11-2018 01:40 PM
Yeah, play it by ear and see how you get on.
My 50% is something my surgeon said - the more oestrogen positive your tumour, the more benefit you get from being on the hormone meds. Not sure how scientific that is though! The Predict equation is just giving the benefit of taking hormone meds over no hormone meds, it doesn't make allowance for how receptive a particular tumour was.
For me I feel like it's all a lottery anyway, the same as whether you get cancer or not in the first place - whatever I do or don't do it could well come back so I'm just giving it my best shot. If I didn't take the meds and it came back I'd always wonder whether I could have avoided it. I also adopt a healthy lifestyle -exercise, eat veggie (though I was veggie for 30 years before i got cancer, so that didn't work!) don't smoke, rarely drink, and have a BMI in the healthy range. I think all we can do is the best we can within our limitations and enjoy being alive right now, 'cos the alternative is rather worse!
All the best. x
20-11-2018 01:17 PM
20-11-2018 01:04 PM
Thanks Kate. Yes, I'd heard that about the fillers - isn't it amazing that something so small can make such a difference....? That's why it's good if people who are having problems experiment with different brands before throwing in the towel.
20-11-2018 12:50 PM - edited 20-11-2018 12:55 PM
Hi Optimissy, I too take Accord, and have been very fortunate with side effects. I was given Cipla at one point and found the side effects much harder, now my pharmacist makes sure I always get Accord. It seems one of the more popular brands to take. Do realise you’re on Anastrozole btw, a pharmacist I spoke to said brand differences can be down to the fillers they use. Kxx
20-11-2018 12:44 PM
Hi Kathy, I really wasn’t trying to influence any decision about AI, my post was more in response to what have people done naturally. Given a choice I wouldn’t be taking Letrozole but although I could refuse I felt I had little choice really. All the best x
20-11-2018 11:27 AM
Hi Serenity and other recent posters
I've been following these threads on and off and certainly respect anyone's choice as to whether to take hormone meds or not - it's our bodies and our life after all. But I just wanted to say that not everyone gets side effects - mine are minimal to non-existent after nearly 21 months on Anastrozole (works the same as Letrozole) - and if they appeared I would look at alternative AIs or Tamoxifen or whatever, or even a different brand of the Anastozole as i understand that this can often help. I've kept to the same brand - Accord - since the start when that's what I was given to begin with, and now it's specified on my repeat prescription.
According to NHS Predict the meds only give me about 1% improvement over people not on it, but the Predict site doesn't allow for how oestrogen positive your tumour is. Mine was 8/8, so 100%, which makes it much more worthwhile for me to take it than the Predict calculator suggests - possibly 50% better on the meds. Might be worth asking your oncologist how oestrogen positive your tumour was.
I was scared witless at the start when i read the list of potential side-effects of the drug but I decided that it wasn't the end of the world if I took it and if the side effects appeared and were unbearable then I'd just stop taking it and things would go back to normal. That still remains an option for me but is not necessary at this point, and may never be necessary - "so far so good" sort of thing. Every year on the drug confers extra benefit in terms of preventing a recurrance. I was just thinking that it might be worth your starting on the tabs and see how it goes - you might be surprised. The baseline Dexa scan will tell you how your bones are, and every two years you get another one to see if anything has changed.
I chose to begin the tablets after rads so took the first one the night of the last rads session. My onc was OK with that (well, I told him afterwards,,,,,,) Good luck with whatever you decide. x
20-11-2018 10:14 AM
Hi Serenity, your situation very closely echoes mine, down to our ages. I've just posted my thoughts on my choice and I'm about to have my oestrogen levels checked so the natural way forward seems for me to be the compromise between doing nothing and sentencing myself to possible years of misery.
I hope you make the right choice for yourself.
20-11-2018 10:11 AM
Hi Kate - as you say, I'm in a rather different situation from you and might be planning different actions if I weren't. Unfortunately for me, looking at AI side effects, virtually all of them are things I have problems with already - on top of which the joint pain I've been getting from Taxol/Herceptin (not sure which) has made me realise that there's no way I could live with that for years just for a few percentage points of improvement. Not only would I have a poor quality of life but virtually no life at all.
For me, at 68, widowed no children or family, it just doesn't seem worth it.
19-11-2018 09:28 AM - edited 19-11-2018 10:06 AM
I was diagnosed straight to stage 4 so my position was very different to yours at diagnosis. I started Letrozole in October 15 along with Denusomab for my bones. I have been incredibly lucky on Letrozole as I haven’t really had any side effects which affected my daily life. I did, however, have to stop my denosumab, due to a problem with my jaw, for about 10 months in total but this has now resolved and I’m back on the treatment.
When I got my diagnosis I wasn’t overweight, had never smoked and was only a social drinker, ate (what I then considered) well and although I didn’t go to any gym or classes was a very active person and walked a lot. I did however, have a very sweet tooth, cake and chocolate over wine any day for me, was a real night owl and had had considerable stress in my life having nursed both my parents.
As I’ve said my position is very different being stage 4, no surgery etc., straight onto aromatase inhibitors, that said I truly believe lifestyle changes have helped me. I feel very well and as I said don’t have any side effects from the Letrozole that affect my daily life. I made dietary changes, giving up processed foods and anything from a cow, only eat natural sugars ie fruit and honey, very little dairy using goat, sheep or plant milk and yogurt, mainly plant based meals, I do eat some organic chicken and lamb and wild caught fish, always organic whenever possible. I take several supplements with my Oncologists approval, now go to bed most nights at a reasonable time and joined a couple of exercise groups, I walk more and cannot recommend Tai Chi enough, and importantly try to eliminate unnecessary stress from my life, easy to say and much harder to do! I’m very lucky that my Oncologist is lovely and so easy to talk to and she is aware of what I’m doing, she doesn’t say much but did have more to say about the effects of stress. Shortly after my diagnosis I went to the Penny Brohn Centre in Bristol, it’s a charity and absolutely brilliant if you want to take an holistic approach. They now do outreach courses but I would go to the centre for the two days if you can, you can take someone with you for support, in fact they seem to recommend it the first time you go, and it’s free, although I think most make a donation but there is absolutely no pressure to do so.
I cannot say anything about your position as it is so different to mine, I’m not under any illusions that doing this will cure me but do think it keeps me as well as possible and in a better position to deal with whatever lies ahead. While I appreciate it isn’t for everyone, importantly I’m happy with the changes I’ve made and genuinely enjoy my diet, don’t miss chocolate at all and if I want an odd cake have it, but find I rarely do, and I feel far better than I did before my diagnosis, Kate xx
18-11-2018 08:57 PM
I am 68 years old and had WLE and SNLB 3 weeks ago. Grade2. Margins all clear and nodes negative. I have been told I have a Nottingham index prognosis score of 3.15 which I understand means that my prognosis is good. I will have 15 radiotherapy next month . The MDT has said I should start to take Letrozole now for five years. Surgeon said it is not for my current treatment but is preventative. I have said I want a dexa scan first and that I want my radio over and a short break to get over all the emotional and physical hurt and will then decide if I want to take it. How do people decide on the risks and benefits of Letrozole as I know some of the side effects can be really bad. I have used the nhs Predict calculator which suggest that over 10 years I would be 1% better off with taking it but not really sure what that means.
18-11-2018 08:20 PM
At the moment I feel it unlikely that I'll want to take an AI or, if I do give them a try, that I'll stay on them for long so I've started changing my diet and looking at other lifestyle modifications.
At the start of this year I was around 6.5 stone overweight but have lost 2.5 stone over the last 6 months of chemo and I've switched from drinking a couple of (largish) glasses of wine 6 nights a week to having either none or a couple of glasses a fortnight if I go out for lunch. I've given up most dairy and am gradually going organic with about 80% of my diet being vegetarian. These are all enormous changes for me.
I'd be interested to hear from anybody else who's gone down the same route (either with or without trying hormone therapy first) or who is planning to do so.