Has anyone managed to get veoza prescribed for hot flushes? I keep asking my oncologist, but he says it isn’t approved for patients with breast cancer. He did prescribe me oxybutynin, but I stopped taking that due to the recently publicised dementia risk.
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Hi
I am currently taking oxybutynin but due to the recent dementia study thinking of stopping it. Could I ask did you have to stop slowly or just stop straight away?
thanks
X
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I just stopped straight away, rightly or wrongly
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I have Veoza privately, last year. My menopause specialist says it is available but a somewhat post code lottery. In my area you can get it through the menopause clinic but not GP, hopefully it will be by the end of the year. Although it hasn’t been fully tested on breast cancer patients, I took it after discussing the pro and cons with the specialist.
I had tried Oxybutynin but it didn’t work very well for me. I stopped straightaway without any problems.
I’m now on Venlafaxine, started on 37.5 mg now 75mg and only get 1 or 2 flushes with much less intensity than before. I’m also sleeping much better. I had thought I couldn’t take it due to other drug interactions but a pharmacist did a deep dive and couldn’t find any evidence of drug interactions. I have a heart tablet that it ‘ could’ possibly interact with.
Elinezanetant has been agreed by NICE but not the NHS and they have data with breast cancer patients at controlling hot flushes and improving sleep. Hopefully this will also be available soon.
Helen Addis MBE ( previously tittygritty on instragram) who worked on Good Morning Britain with Lorraine and fronted the change and check campaign has been able to get Veoza on the NHS and had success with no flushes. She can be found on instagram sharing her story.
Please ask to be referred to a menopause specialist. My oncology wouldn’t prescribe vaginal oestrogen but the menopause specialist stated all women should have it and I have recently seems a gynaecologist who said exactly the same. My menopause specialist shared a meta analysis study of American Gynae and Obstetricians looking at various studies that states it doesn’t pass through into the bloodstream after a few weeks and doesn’t increase risk of recurrence. Again I discussed my own pros and cons, with two invasive tumours and decided I would take it for comfort and to help prevent issues such as UTIs etc.
I hope you get the help you need.
Thanks for this very comprehensive reply. I’ll do my homework on these options before my next appointment.
I also wrote this. I try to update when needed. It’s been read over 5000 times.
Good evening @naughty_boob
May I ask if you experienced any unkind side-effects when you commenced Venlafaxine and if you did, how long until they settled.
Thank you
Hi @mrsjelly
Hope you are well.
I had headaches and some nausea. Fuzzy headed for several weeks. I started on 37.5mg once a day, when I increased to 37.5mg twice a day the headaches and fuzzy headed started again for about a week. I have since changed to 75mg slow release as the immediate release were out of stock in pharmacy.
After my daughter was born, many years ago, I was given an antidepressant and took it for two weeks and had to stop as I felt worse most zombie like. I had a baby and a toddler to deal with and I couldn’t feel that way. This wasn’t anything like that.
Take care
Thank you for the update @naughty_boob Very helpful as always.
I started it 37.5mg sustained release and after 5 days I stopped. Headache, nausea, no appetite, spaced out, couldn’t sleep. Lost half a stone. We had a holiday planned and it would have meant cancelling it. Somehow continued working whilst feeling wretched but is was awful. Drug did start helping with the flushes which at times have gone in for hours. They steal my sleep and when they really bad I have what feels like prickly heat
I have listened to Dani Binningtonks podcasts and one menopause specialist said that women stop Venlafaxine after 3 days because of the side-effects. Said you need to persevere for a fortnight then they settle. Saw GP again we agreed that I should try it again but I need to be off work That is the plan for next week. If I can’t tolerate it I can switch to Escitalopram.
I then had oncology review last week. Updated him about symptoms and side-effects and told him that my hair was falling out hence why I resorted to a buzzcut.Whilst on Folkestone seafront my hair was blown around. Saw the result in a restaurant mirror and it looked dreadful so found a hairdresser who shaved it off. When I looked at myself all I saw was a receding hairline which I was trying to cover with hair. Now I see my face. My confidence is back and I feel 10 years younger. I digress. Oncologist requestedbloods taken to exclude other causes for fatigue and hair loss rather than assuming it’s the Letrozole. As for hot flushes he said that as side effects were so troublesome then I could try Oxybutinin for 6 weeks instead. I am mindful of the cognitive effects and dry mouth. Not keen. The benefit of either of the other two drugs is that they also help with mood. That has been all over the place. Not because of cancer but because of work. Job share partner left in August and hasn’t been replaced. Feeling overwhelmed with it all. I am not as I was pre cancer, nor will I return to my old ways of working unpaid hours to keep a lid on it. It was too much when I worked full time and now I feel like I’m drowning. I am not a worrier or an anxious person but have turned into one 
.
I’ll give Venlafaxine another go and if it’s no good, I have options! X
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I used Oxybutynin but found its side effects hard to deal with. Dry mouth woke me at night as well as hot flushes. Had to drink more water to keep hydrated. I have also heard about long term problems so glad I stopped.
I’m so sorry to hear you have been struggling, the anti depressants mess with your brain and you need time to adjust, taking time off work is a good idea. So annoying your job share has left, I assume work is pressuring you into ‘covering’ their role or taking up the slack. Something you don’t need. If it becomes a problem ask for occupational health assessment.
I’m on Exemestane and am losing quite a lot of hair, as well as it being extremely dry, but for me I have a lot so not as noticeable. Hair thinning is a problem with lack of oestrogen. My MIL was complaining about how thin her hair had become and she is late 80s.
Take care. I hope your next try with Venlafaxine is more successful.
Yes, I have just had Veoza put on repeat prescription but it took quite an effort to get there! I finished my cancer treatment last year but was having frequent hot flushes after coming off HRT. I saw my GP who initially would not prescribe Veoza, but he did refer me to a private menopause specialist. She prescribed Veoza and it made such a difference so then she wrote to my GP to ask him to take over treatment. Veoza had only just gone onto the Dorset ‘formulary’ which means it is approved in certain cases, including for those who cannot take HRT after having breast cancer. So the good news was that he then prescribed it on the NHS and put it on repeat. He will monitor my liver function via blood tests, and the specialist said to try to come off it in a year’s time.
So it can be done - good luck!
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That’s great to hear. I hope it continues to work.