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.
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!
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.
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.
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.
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…
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.
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/
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!
Another update.
Oxybutynin I was on it for 7 weeks with no real change and then the pharmacy gave me the owing medication which was a different brand, a week or so later. I began to notice a difference, mainly less or none in the day or evening but I still have some at night especially around 2:30/3:30am. Aches and pains also wake me up and I have to move to get comfortable. Vaginal issues has mainly resolved using Imvaggis and Blissel. I have reduced my dose to once a week, even though menopause specialist said twice a week would be safe. My breast surgeon/ oncologist suggested lowest dose for shortest period of time. I decided if I can manage on lower dose it would be better. I don’t use the Blissel every week either as the outer area is so much better. I can wear anything and sit on a stationary bike to exercise.
I spoke to my team recently and we agreed I would come off the Letrozole for 4 weeks as I’ve been on it for over a year and have ongoing issues with aches and pains, that I’m not sure if it’s the medication or wear and tear. I had an MRI on my neck in October and it found 2 bulging discs ( pre prolapse) which is common with age and some other wear and tear. The doctor said my aches elsewhere could also be wear and tear and that my chemo/Herceptin treatment could have exacerbated the issue. It would be great to have a full body scan but nobody is keen to do this. I was told they would call in a month to see how I got on and if I noticed a difference earlier that I could call them. We discussed Anastrozole, Exemestane and Tamoxifen as alternatives. All with possible sides effects.
I have spoken to a few other ladies who have stopped Letrozole altogether and others who swapped to one of the above with greater success. As usual it’s so individual.
A friend told me about Veoza just yesterday but I’m not sure exactly what it’s meant for. From what you’re all saying it seems to aid with physical symptoms of menopause. Can anyone tell me if it’s meant to help with the mental effects as well or not please?
I am on tamoxifen after a reoccurrence. I was on letrozole and zoladex last time but became suicidal on them so they stopped them immediately and left me to see how I got on. Once they were out of my system I improved a lot but then had the reoccurrence so I need to try to stay on the tamoxifen this time. I’ve been on it 2 months but I am already starting to notice my mental health going down again already. I have an appointment with my oncologist next week and was wondering if Veoza would be a possibility to help me stay on the tamoxifen.
Any info would be greatly appreciated.
I’m not sure if it affects mental side of things but I have read many anti depressants will deal with hot flushes as well as mental side effects. My menopause specialist mentioned Venlafaxine.
Here is a link for MacMillan.
Dani Bennington has a video on the above link and started the charity Menopause and Cancer after her own cancer diagnosis. There are over 150 podcasts with a variety of experts. Episode 143 has alternatives to HRT with Dr. Zoe Schaedel, a British Menopause Society expert. There are ,any YouTube videos aswell.
I would recommend a chat with a menopause specialist, you have a right to be referred urgently, but that can take some time, I waited 9 months on the NHS but paid privately to see her earlier and then continued on the NHS. Our mental health is entwined with the cancer diagnosis as well as oestrogen depletion, excluding any other issues we may have.
Well as seems to happen at the moment in the NHS the Oxybutynin from Strides Pharmacy that was working for me change be sourced. So I decided to stop them as the others were causing severe headaches and not really dealing with the hot flushes or urge incontinence.
After stopping Letrozole I noticed an improvement in fatigue, hot flushes, aches and pains, although they didn’t completely go away. Probably due to wear and tear in the joints and that the oncology team said that my treatment will have affected other parts of my body.
We agreed I could try Exemestane and they agreed to post a prescription with a re in 4 weeks. Royal Mail didn’t deliver the letter, so after a week I chased up a new prescription. I started the new medication on Wednesday this week. All seems ok so far.
I am continuing with vaginal oestrogen as already mentioned but I have decided just to use it once a week and it seems to be keeping everything moisturised enough. I was advised that aromatase inhibitors are limited evidence s they haven’t been researched as long as Tamoxifen so I feel better being on half the dose.
Thanks for replying. I did try many antidepressants including venlafaxine last time, all unsuccessful sadly.
I will have a look at the podcast but I’m definitely going to ask to see a menopause specialist when I see the oncologist next week.
Thanks and I hope trying a different AI helps you. Having cancer is bad enough, then having to deal with all of the menopausal stuff as well really is the gift that keeps on giving.
Hi @kazaroo, you sound like you were having a difficult time with the drugs you were on.
Please remember we are here to chat things through, especially when you feel like you’re having a bad mental health day and you could do with someone to talk to.
Here is how to reach our nursing team: Speak to a nurse | Breast Cancer Now
Sending our warmest wishes
Bernard
Your post popped up and I resonated with it, when I had my ovaries out I struggled with my mind. Never experienced mental health issue before but omg was it bad. I invested in a Ladycare magnet and have never looked back. I wear it all day every day, the best £45 I’ve ever spent. Would definitely recommend you give it a try xxxx.
Thanks for replying. I’ve never struggled with my mental health before cancer either. I think that adds to the frustration of it for me. I used to be able to deal with anything so why can’t I now but it shows the power of hormones.
I’ve never heard of the ladycare magnet but I will give it a look. Thanks
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…
but told to wait 4-6 weeks and was suggested could have double to dose.