@lynnpvw It’s so interesting the difference in approach. I met with the menopause team when I finished chemo after terrible hot flashes and chills continuing. I’d been on hrt for 5 years & was 8/8 estrogen positive. I was told not a chance they would prescribe veozah as they didn’t feel there was sufficient evidence that it was safe yet for breast cancer patients taking letrozole. I am going to ask again as I waited 8 months for that appointment & I’ve never been rushed out of a room by a Dr so quickly-I did not feel at all listened to. Post-treatment it’s still persisting & I haven’t even started letrozole yet so I’m very nervous about how much worse it could get.
@whataloadof I wrote this on the forum and still update. I had Veoza privately then stopped as it was too costly. Now on Venlafaxine which is working well to stop hot flushes. I swapped to Exemestane which is more tolerable than Letrozole for me.
@bobcat1 it’s really nice to read about someone not having issues with Letrozole. I think many posts on the forum are people asking for help and support, which doesn’t happen if you aren’t having issues. Dr Liz O’Riordan talks about side effects and makes it clear you might not get any and the severity differs between people if you do.
I think age and pre-existing medical conditions have an impact on how we tolerate medications such as Letrozole and their side effects.
Take care
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@naughty_boob Thanks so much. I tried venlafaxeline after coming off hrt last year & i didn’t do well with it-made me very dizzy & spaced out-not good. I’m on pregabilin now which did reduce the intensity initially but seem to be back into hourly now & it’s miserable! I’ll keep trying different things & hopefully will eventually find something that helps but guess I’m very very hormone filled! & was 5 years post-meno-hence hoping for veozah to help x
My hormone specialist hoped Veoza would be on the NHS between September and December this year, although she said something similar in 2024 but NICE didn’t approve until this year. I have some side effects with Venlafaxine which settled then I increased my dose and I’m a bit heady and fatigued.
Keep posting once, I think it’s so great to share.
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@whataloadof I’m also ER 8/8 PR 8/8. Just reading various posts on this thread there’s certainly a difference. I’d been to my GP at the end of last year for HRT as she’s swapped my usual pills for gel and I wanted to go back on the pills. I must have stuck in her mind as when she got notification of my diagnosis she immediately rang to let me know that Fezolinetant was now available on the NHS. It wasn’t mentioned by my breast care nurse initially although she’d previously suggested looking at the menopauseandcancer.org website and it’s listed there as an alternative to HRT (although it still says it’s only available privately, which is incorrect). When I asked if it was OK to take it she said that as it’s listed on their website it’s OK. No problems so far but I’m aware that could change. We’re all different and there could be a valid reason why they didn’t give it to you but it could worth trying to get another appointment for advice ![]()
@lynnpvw Thanks ever so much for sharing this. Her comment was I could have it if I was on tamoxifen but not letrozole as there wasn’t enough data on the interaction yet. Needless to say I won’t be giving up! I am about to start ameclabib as well which I know like veozah puts strain on the liver which may be the reason x
@whataloadof I’m finding it all a bit overwhelming to be honest. You take a drug to prevent something but then face a list of side effects and take another drug to ease those ….. but then face potential issues with your liver - and on and on it goes. Everything was fine until February this year, no lumps or signs that anything was wrong. Just a routine mammogram followed by recall for further tests. Now I feel (as Im sure the majority of us do) as though I’m in the middle of a nightmare but fighting to put on a brave face …. Not always successfully ![]()
I’ll keep my fingers crossed that you manage to get something suitable to alleviate your symptoms x
@lynnpvw It is completely overwhelming isn’t it? I didn’t even take a tablet for headaches before & so far I now have pregabilin for the sweats, blood thinners for the next 2 years after picc line dvt & it’ll be the biophosphates, letrozole & abemaclibib every day. I just want my body to heal naturally with good food & exercise but I know that’s not an option as it didn’t stop this happening. You’re so right it seems like here you go have another side effect & here’s a tablet for that too! Such a burden on our poor bodies. Very grateful all these things to keep us around exist & I will take them & hope to find joy in my life again in the coming months. Sending you all my best (with only one breast!) x
I am really sad to hear you’ve had such bad side effects ![]()
I am reading all these posts as I’m 4 wks post op and my consultant is keen to get me on endocrine therapy. However two of my friends have had had awful side effects resulting in one not being on it for long and the other having a break after 2 1/2 years.
I am awaiting radiotherapy and have said I need more time to think about it.
I have spent the last 10 years caring for my husband battling bowel cancer, lost him 16 months ago but I have seen how bad treatments side effects can be, and so I’m determined to have a good quality of life not just extended.
Best wishes to all on here ![]()
@hb1 Sending you love for being hit twice by this.
My view currently is I’ll try it & see how I do & at least get through the 2 years to go alongside the abemaclibib given how effective that is. I think trying is all we can ask of ourselves x
@whataloadof awww your sign off made me smile (in the most caring way). All my best wishes to you too x
Bless you, you are probably right ![]()
Hello everyone, This is my first post. Thank you all for providing a supportive environment!
I was diagnosed last August, 25 years after menopause. I had a partial mastectomy followed by 16 proton radiation treatments. I started on letrozole during the radiation. I expected terrible side effects given my medical history which includes fibromyalgia (diffuse pain), history of endometriosis, polycystic ovary syndrome, crohn’s disease and others. I felt fine for about 4 months. Then, I started to have much worse pain in muscles and joints, sleep issues, a few hot flashes, and GI symptoms. For me, though, the worse symptoms were cognitive and emotional. I felt depressed, unmotivated, and disorganized. I stopped it and most of the brain-related symptoms went away. Now trying anastrozole which has already caused severe GI and joint pain. For those of you just starting, please note that I likely am having a worse time than most with these medications because of my medical history. If any one else has a complicated medical history, I’d be very interested in how you are doing and what you’ve been able to tolerate. I have seen that some people do better on exemestane. I am in the US. Thanks very much for any replies. Best wishes to all of you!
For calcium supplementation you need to take vitamin D3 and K2, as K2 directs the vitamin D to bones rather than bloodstream.
Hi, I’ve been taking Letrozole for the past 3months and to be honest I too was worried after reading about the side effects. I can honestly say I feel fine just a few flushes but nothing drastic at all which I’m so glad of. After Chemotherapy these seem a breeze. So rest assured we’re all different but going through Cancer together. X
@dido1 This is very good to read-pleased for you that it’s possible. Just finished radio so going to give myself a couple of weeks then get going on this x
Hope all goes well for you. Please keep us posted xx
I was on letrozole for just over 4 months before starting abemaciclib. In that time I didn’t really feel any side effects apart from occasional hot flushes, reminding me a bit of menopause which had been about 10 years previously.
I’ve since finished my 2 years on abemaciclib (just over a week ago). The initial symptoms from that settled well, but overall I did have a sapping of energy, aches and cramps. Also hair dry and thin, dry skin, eyelashes and eyebrows thinner. I’m hoping for improvement of how I feel quite a bit now, but thinking that the letrozole will have been making a contribution.
Anyway I do think that I should feel pretty much ok for the rest of my Letrozole time.
I’ve been affected by the treatments I’ve had, chemotherapy, radiotherapy, lymph node clearance, zometa infusions, but as far as I can make out I think side effects for me are sort of light to medium, definitely not severe. So saying I’m glad to have finished the abemaciclib, it was dragging on me a bit.
All the best. xx
@cynoptimistic Thank you so much for sharing. It’s so hard to point at what is causing a symptom given how many different parts of our treatment there are! Wish you all the very best x
I haven’t had any side effects either apart from hot flushes, which sometimes are unbearable. I have a hand fan (from Amazon) and a pedestal fan with remote in the bedroom…works well