Letrezole - pain!

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

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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 :woman_shrugging:

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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.

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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?

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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

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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

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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

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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

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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

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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.

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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!!

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@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