Hi, I’ve been on Letrezole for a couple of months now and some of the side effects really resonate. I seem to get very painful legs but one thing that is helping a lot is a weighted blanket, it might help xx
2 Likes
That’s strange that your team want to change you. The first I’ve heard of letrozole is on here. We decided I was probably perimenopause before all the treatment started. I am on tamoxifen and haven’t been told I will change. I have the goserelin injection every 4 weeks also. I was told after my first injection that I am now basically post menopause! Can’t have the bone infusion unless you are post menopause. No bloods or anything to check, just you are 
1 Like
Hi, I’ve been taking letrozole for almost three weeks, having put it off for a couple of weeks for fear of the side effects. I haven’t had any so far. Could it be I may get some when I’ve been on it longer?? I hope not!
They say the manufacturers do vary in what ‘extras’ they put in so trying different brands have helped a lot of ladies.
2 Likes
Ive been diagnosed exactly the same as you but I’m twice ur age… I’m 60
Your post made me cry… it’s so pissing unfair…
This cancer shit is awful…
Dunno what to say… I think I’d go back and spk to the docs and weigh up the pros and cons of letrozole… see if there’s an alternative?
2 Likes
My dear, the conditions you describe, such as depression, muscle pain, bone pain, etc. are not necessarily or exclusively due to Letrozole. I have been on Letrozole for 16 years, since November 2008 to be exact when I was diagnosed with breast cancer, bone metastasis, strong ER and PR/ HER negative; I suffered from terrible depression, but that was induced by chemotherapy (see immediate adverse effects of chemotherapy) but also by the shock of this terrible diagnosis; it was a chemically induced depression and I was cured only by following medication specific for depression, a treatment that the psychiatrist prescribed for me; I had muscle pain and bone pain during treatment with ZOMETA (biophosphanate for the treatment of bone metastasis); the only adverse effect felt by me with Letrozole is a poly peripheral neuropathy (tingling/paresthesia sensations in the lower limbs) which, however, can also be triggered by the chemotherapy treatment. Anyway, I will take Letrozole (aromatase inhibitor) for the rest of my life because, over time, it has been proven to work for me. And scientific studies confirm that Letrozole - regardless of the name under which it is marketed - is extremely effective in advanced breast cancer. If you want honest advice from a stage 4 breast cancer survivor, take your depression seriously. Go to the psychiatrist, he is the only one who can help you. Also, trust that, with a correctly administered treatment, you will be healthy and your life, the one before the cancer diagnosis, will return. I wish you good health and a long life, so long that you forget you had cancer. i hug you
7 Likes
I was also on letrozole supposed to be for 10 years but I stopped taking 5 1/2 years in not due to pain as I was fortunate not to have these problems but my hair thinned a lot and that got me down so I stopped taking. The 5 years I was on it I always had the same brand Accord. The pharmacist at my local Boots was great and made sure I always got this brand. So it’s definitely worth looking at. I’m sorry to hear at 38 you are suffering with so much pain. Wishing you well. X
2 Likes
So pleased to see this post and that Accord brand has helped u feel so much better. It’s ridiculous that something as simple as this can make such a huge difference. We don’t get enough information about this. It’s so good that we can help each other on this forum and give advice that might help make life more bearable. Xx
1 Like
Speak to your BCN and get an appointment with your oncologist ASAP. This is your quality of life and your body and you can do this. I couldnt tolerate Letrozole so have happily switched, another friend couldnt tolerate Letrozole or Anastrazole (which I am on) and had lasting pain (neuropathy) so its not for everyone. Agree with other posts though so do look at options around anti depressants - they can help with back pain aswell as what they are designed for and are not addictive
2 Likes
Glad you’re feeling a little better. I think we all know that feeling that this sometimes feels the hardest part, post surgery…
I too could not cope with Letrazole (tried for four month by which time, amongst other symptoms, I could no longer get up out of a chair, or walk dog let alone bend to pick up his poo ). Had a break then switched to Examestane. Been on it two months and much better. Aches and pains still there but much more manageable.
I also take (recommended by oncologist) turmeric and black pepper, daytimes and sage and magnesium (for night sweats and better sleeping).
Hope you find your path a bit easier on this long journey we are all on. It’s not easy and only us warriors know just how hard it can be, but remember there are lots of us out here, all supporting each other. Xx
3 Likes
Hi I have been on Sun Pharma Letrozole since March and I have experienced the side effects of aching joints but have started to take Tumeric and Black Pepper capsules and that seems to have made a difference. I haven’t found any of the symptoms too excruciating just now and again something happens and it is off the side effects list! I may be lucky but I think at the moment I will just stick with it - did have a different packet once and change back to Sun Pharma after just 5 days as I could feel a huge change.
1 Like
Thank you all again for the messages, support, advice and love. It does definately help knowing you are not alone
I am, thankfully, doing much better at the moment, its very sad to read that first post I wrote and remember how desperately sad I was feeling.
As mentioned further up the thread I switched from Sun Pharma to Accord and the difference to the pain is unbelievable, from not being able to get down the stairs never mind leave the house, I am now out and about walking the dog each day, back on school pick ups, out for lunch with friends. If I push to hard I do ache but managed with a sit down and 2 paracetamol im back up later in the day.
I did also start taking CBD gummies and I do believe they are helping my mental health, I was very skeptical at first but was in such a bad place it was worth a try, after around a week it felt like somebody had taken a big black cloud out of my head and I am thinking clear and rational thoughts, as the days have gone on I feel like im me again for the first time since my diagnosis. Everybody is different and its no one fix fits all, but if anybody has considered CBD I would recommend a trial for a month I do truly believe it has helped me.
After reading a lot of replies ive also just ordered some tumeric capsules so will give them a try and see if they can help with the lingering aches
Sending love to you all, wishing everybody well in your continued recovery, we are all amazingly strong women to go through this, to keep fighting and to want to help and support others, cancer picked on the wrong people!!
2 Likes
@scousesurvivor so glad you’ve found a brand to suit you. Strange that for me it is the swap to Sun brand that has made an amazing difference! Good luck
2 Likes
Please don’t worry about the moan. That’s the beauty of the forum. I haven’t been on for a while but I know what it’s like to live with chronic pain. I was diagnosed 8 years ago. I had both chemo, radio and surgery and have taken aromasin for about 7 years and I’ve suffered chronic pain for all of that time. My worst pain was in the months following chemo and I’m guessing you may be in that time frame. You can ask to have a break from your hormone suppressor to see if that helps with easing your pain.
It’s a fine balance though between the pain and the risk of recurrence. I’ve been taking aromasin for 7 years now and my oncologist is happy for me to stay on it for 10 years.
I live with chronic pain, I’ve learnt to manage it or live with it through tablets but also well supported Pilates and gentle exercise. It’s really tough living with pain and it’s tough accepting that it’s as a result of your past and ongoing treatment. Sorry maybe not what you were hoping to hear and I’m sure otherswill have very different stories. Xx
2 Likes
After reading your post , I just thought I would ask - did you check with anyone if it was ok to take CBD gummies with letrozole ? I have read they are good for sleep problems which I suffer from v badly but I had suspected it was another product that would probably clash with letrozole
Anyone got any tips for a good night’s sleep which I desperately need ?! I take sun pharma brand of letrozole
1 Like
Hi,
I didnt check with any consultants but read up online and couldnt find anything to suggest there would be a negative interaction.
I was reliant on sleeping tablets before trying the CBD, id been on them for months and worried about the addictive nature of them so id do a few days without them and then when the exhaustion really kicked in id do a day or two of sleeping tablets, wasnt ideal at all but I genuinely got about an hour or two broken sleep without them.
When I started the CBD I stopped the sleeping tablets, I take the gummies in the day and before bed I take the oil under my tongue and for me it has really helped, I dont have the restless tossing and turning anymore and my mind switches off wheras before it was a constant running commentary going around my head, I find I fall asleep within about half hour and if I do wake during the night im very quick to drift back off and probably get about 6 to 7 hours a night now so a vast improvement for me.
I did then mention it to my consultant when I last saw him and although he said he couldnt suggest it (not enough testing etc) he wasnt against me using it if it helped so he wasnt concerned about drug interactions.
Everybody will be different but ive really found it beneficial for me, I was very skeptical to start with but im glad I have it a go.
I hope you find something that helps, the lack of sleep is so difficult to deal with xx
1 Like
That sounds exactly like my night’s sleep too ! It has become much worse over the last few weeks and I now dread going to bed. Have tried the usual pillow sprays, podcasts, even a noise sleep machine. But nothing has worked as yet.
I aim to visit my GP after holiday period but do not really want to rely on sleeping tablets myself. I am not sure I am brave enough to try CBD gummies though as never tried anything like that before but the thought of having so little sleep is terrifying
out of interest , where do you purchase them to make sure they are safe to take?? Thanks for replying, much appreciated
Appreciate any body else’s input too into things to try for poor sleep too
Through McMillan nurses you can have free access to Sleepio app which has a program that may help sleep. It was recommended at a taking control session I went to.
Oh Thankyou very much for that info.
So do you contact a local McMillan nurse or can you do that online ?
I was the same, I was quite wary of taking it, all new to me but I got to such a desperate place that I thought give it a try.
I did a bit of research into different companies and ended up using Supreme CBD because they are endorsed by a lot of sports people, had great reviews and were best value for money.
Ive never had a negative reaction or side effect from it ive only had positive experience, id recommend trying it if its something youve considered, if you dont like it after a few weeks you can always stop, that was my plan, I tried the bundle with the gummies and oil together, ill add the link below it should get you an extra 25% off if you do decide to give it a try
For me it was contact my breast care nurse
1 Like