Thank you for all this information. I had a terrible menopause which was eventually well managed privately then via the nhs with HRT. I had to go cold turkey too once I received my diagnosis and my symptoms are back with a vengeance and this is before commencing my letrozole. I’m really dreading the side effects of this drug as am already not coping well with the symptoms I have.
I really appreciate you sharing your story and some helpful information which gives me some hope.
I’m glad you’ve been able to address some of the symptoms you’ve too been struggling with and wish you a good quality of living.
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I thought it was time to do a quick update on my progress.
I’m now 7 weeks on from starting vaginal oestrogen and I can say it’s made a huge difference. No longer sore, itchy or in pain. I can wear what I like and sit without discomfort.
I followed the advice to use everyday for 3 weeks and then twice weekly. I still use moisturiser 3 times a week and lubricant when needed. I’m now past the time that it may pass over into the blood stream (6 weeks) so that’s reassuring.
The Fezolinetant/Veoza has also stopped nearly all of my hot flushes, I’m definitely warmer than before and when I do get a hot flush it just a slight increase in temperature and pass quite quickly. My sleep is improving but I do notice my aches and pains can wake me or I get cramp. I find moving nd stretching helps more with the aches and pains. If I sit too long and get up I look like an 80 year old woman hobbling for a few steps until it eases.
I also just had a clear annual mammogram.
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@naughty_boob thank you for the update, it’s good to hear when things are actually helping. Your progress is champion, if you’ll excuse the pun, well done on your first year result too. Love and big hug xxxx
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Thank you @nannabee I think it’s so important to follow up some threads. I’ve read a few and I think people get ‘better’ and move on and probably forget to update and I’m always wondering how they got on.
thank you for your report on what could be available if i went outside the NHS
for political reasons I could not do this but i can see why you have done a runner towards a more sympathetic sector.
Seagulls
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@Seagulls as well as the BC I’ve just had skin cancer and the treatment left me with an awful large itchy dry flakey area in the centre of my back. My husband has been applying Cetraben Overnight Ointment twice a day and the area is now as he says “as smooth as a baby’s bum”. Not that he’d know how that felt as he never changed any nappies and my boys are now 51 and 48 so a long time ago. I don’t know if it’s been the right thing to use etc but I wasn’t getting anywhere with the creams/salves suggested by dermatologist and ended up deciding to sort it myself (I’m a typical stroppy and impatient old lady). Hope it helps xx
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Another update.
Hot flushes are mainly few and far between, much less severe and pass quickly. I sleep better. Vaginal oestrogen has allowed me to sit on a bike again! Feels more healthy and moisturised.
I have looked at the NICE website regarding the Fezolinetant and it looks like they aren’t meeting until March 2025 and publishing May 2025. That’s several month’s longer than I was advised (January 2025) so I will be reviewing the cost and whether to continue. As it’s not just the prescription, but a follow up consultant fee, prescription handling fee and postage, it adds up. I’m speaking to the menopause consultant soon so will talk this through before ordering more. There is an option on the NHS for Oxybutynin.
Here’s a study published in 2020 with good results.
i have been getting worsening pains in my knees ankles and legs and am finding them so horrible I am thinking of stopping letrozole. I have also been getting hot flushes which I did not get at all diring the menopause. It’s all making myquality of life worse although being an active gardener helps as I find gettomg totally absorbed in physical activity distracts me from thinking about other thins which miraculously reduces the pain to nothing. So worth a try to reduce dependence on pain killers. it annoys me that I have to payfor boxes and boxes of paracetamol and ibuprofen as the GP isn’t prescribing them.
I am thinking of putting in a request. I reallydo rattle and boil rather than rattle and roll.
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@Seagulls I know what you mean about paracetamol, every time I’m in a shop I pop two more packets in my basket. Those two packs don’t last long.
I’m sorry you are experiencing hot flushes that you didn’t have through menopause, I’ve been told it’s because the letrozole stops all oestrogen in your body not just ovaries. It affects our brains, joints, skin and so much more that we have all taken for granted over the years. I really wish the oncology teams talked about these side effects more and discussed how they can be helped. My GP is so reluctant to prescribe anything, even my Calichew D3 are not in my repeats, even though the oncology team wrote to tell them to do so. I have to put in a special request each time. So frustrating.
Gardening is something I enjoy also, but I find it so much harder. I ache much more after doing some ‘simple’ tasks.
Please talk to your oncology or breast team before stopping Letrozole. I have read that others move onto Anastrozole or exemestane which have reduced side effects. I talked about this several months ago and I was told it was too early to change and may need the options later on.
Hi @Seagulls sorry for not replying earlier…having some problems at work and my husband is probably having another MS relapse.
About the knee pain I am doing acupuncture privately but it’s very expensive and also my oncologist referred me to see a rheumatologist and I had a MRI on my knees waiting the results and seeing him again in November but he mentioned maybe having steroid injections for the inflammation as my oncologist wants me to continue with the Letrozole. I’ve got another 4.5 years.
Before all of that my GP prescribed naproxen for the pain so worth exploring this as well as the paracetamol/ibuprofen combo wasn’t working for me. I am doing exercises as well but some days is really hard. The knee pain can be horrendous and I am getting fed up but the thought of the cancer coming back is even worse.
Take care. Xxx
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those are exactly my symptoms and I am also finding ibuprofen and paracetamol don’t work. so thanks for the tip about naproxen as I have an appointment coming up on 15 October on the phone to talk about my health issues with the oncologist.
i am also weaker now so i keep falling over and banging my head when the springer spaniel / dalmatian rescue dog we have suddenly lunges sideways. I could moan for England but my hisband has decided his problems are far worse than mine and he is forever sending me off to get urine samples given in for a prostate problem he isn’t prepared tohave surgery for.
I need help and I have had a call from my GP who has referred me to the social prescriber team. He did suggest I book in to a travelodge with the dog if I need a break. I am looking forward to booking in soon for a week of freedom!
seagulls
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thanks naughty boob. iwould complain about adcal not being on repeat. that can’tbe right as you have totake it to counteract effects of oestrogen depletion on bone strength.
seagulls
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Hi @Seagulls that’s a great idea of just having a week off everything and everyone 
that’s absolutely up my street…my son is in year 11 and doing GCSEs this year so I can’t do that but one can always dream…innit…
Please let us know how you get on with your various appointments.
Take care. Xxx
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Just another update.
I had a phone call with the menopause specialist and we discussed my ongoing issues of hot flushes (surge of heat nothing fluffy about it) and urge incontinence especially at night. She advised that the NICE review of Fezolinetant has been delayed and if agreed in May could be as late as December 2025 before it can be prescribed in the NHS. That’s cost prohibitive for me as it would be 18 months on a private prescription including consultations would be in excess of £1600. I have said I’d like to go back on it as soon as it’s on the NHS as it worked so quickly and was quite effective ( didn’t stop all flushes but the ones I had became bearable) We agreed I would start Oxybutynin as it helps with urge incontinence and hot flushes in an Australian trial.
I’ve been on them for 2 weeks and the urge in the day is better but still having hot flushes and urge at night. I think it’s the hot flushes every 2 hours that wakes me up and then I need the loo. Told it can take 4-6 weeks to work. Have another review in 3 months.
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Hi @naughty_boob I am so glad to hear that Veozah worked for you…I also saw a menopause specialist and she acknowledged the fact that there was one recently done trial for the safety of the drug but it’s not clear if breast cancer ladies were included in it…in the article it’s just saying people who can’t take HRT but it doesn’t specify anything else…there is also a problem with the liver as with most drugs that’s why I need to have regular blood tests, checking my liver enzymes…
She also told me that it won’t be available on the NHS for quite a while which is very disheartening…
Did you have regular blood tests whilst on the drug?
I am seriously thinking about starting it even though I can only get it on a private prescription and the consultation with the specialist cost me £250 already…so it will be huge chunk of our household budget but I have been really struggling…
I was on oxybutynin as off label drug for hot flushes. My oncologist prescribed it to me. I was on it for about 18 months and unfortunately, didn’t work for me… hopefully, it will work for you…
Hi @mun4o
Sorry to hear the oxybutynin didn’t work for you. Now 3 1/2 weeks and still getting flushes. 
but told to wait 4-6 weeks and was suggested could have double to dose.
The Veoza /Fezolinetant worked with a few days, it didn’t take the hot flushes away totally but the ones I did have were manageable. Yes it is quite cost prohibitive, with £250 initial consultation, then £150 for follow up every 3 months by phone and then the cost of the drug, pharmacy charges and postage costs. I have made it clear I want to go back on it as soon as it’s on the NHS. I had no side effects from it, whereas Oxybutynin is causing headaches and in the long term can cause glaucoma ( already have family history and yearly eye tests on the NHS, so don’t want to make it worse).
As far as trials, I don’t believe the published ones were specifically done with breast cancer patients but there is supposed to be one ongoing. I don’t believe all drugs are trialled specifically on breast cancer patients such as anti depressants prescribed for hot flushes. I took it that it had no hormones so it was safer than HRT (NICE preferred drug for flushes).
Let me know how you get on with Veoza if you decide to give it a go.
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HI I am Hugely interested in more information on Veozah as I had been taking it until my diagnosis and it was a total game changer for me! (Privately purchased) I am awaiting hormone therapy prescription and dreading it. I have to confess I “stocked up” before formal diagnosis and have used Veozah a few times post op. I’ve tried contacting Trial but doesn’t look like they are recruiting in GB. I really don’t understand the risk as it’s non hormonal but guessing I won’t be able to get consultant to approve me using it! I have my Oncology appointment to plan radiotherapy on 21st. Any advice would be greatly appreciated x
@wee-emm Ask for a menopause specialist appointment, it can be prescribed off licence for breast cancer as long as they discuss the risk and benefits.
I’m not doing very well with Oxybutynin, it has helped with urge incontinence but hardly touched the hot flushes and I’m 7 weeks in now. The pharmacy face me a different branch for some that was owing, so I’ve swapped to them to see if the brand makes a difference. I’m really disappointed as the Veoza (Fezolinetant) worked really well but it’s so expensive ( for me it was nearly £2000 with the medication, pharmacy charge, postage and consultant fees each visit).
I’m sorry you are experiencing such awful symptoms. It’s very upsetting as I can buy Veoza legitimately for £75 from Asda Pharmacy prior to diagnosis by doing online consultation questionnaire. I hadn’t been taking long enough to consider kidney function check with GP but I certainly don’t seem to suffer ill effects. They really were a godsend and I grudge losing that along with the other stuff BC brings. I hope you get sorted. I received this link From Azella who are running Highlight Study into use of Veozah in Breast Cancer patients. It doesn’t look like any UK recruitment https://www.clinicaltrials.astellas.com/
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I understood from the menopause specialist that there were trials ongoing and with breast cancer they may have to wait 5 years or more to say if it affects recurrence/mortality. But I’m not sure how they can say for definite as some will be on other medication and no one can say why we get breast cancer and why some have recurrence and others don’t.
I had to pay £75 but also had consultant fees £250 initial/£150 follow up 3 monthly, pharmacy fees and postage. Apparently the GP can do a private prescription but they wouldn’t without consultant approval (cancer and menopause). I have wondered if I could ask for one now as I have the approval and I was on them before. It would then be £900 annually unless the GP/local pharmacy chose to charge!