LETROZOLE

[Bunny286]

Hi this is my first post 10 months ago when I just turned 60 I went for a routine mammogram and got a call back! Well it was like an outer body experience could not believe it was happening to me . So after 3 hours of mammograms, ultrasounds and biopsies they confirmed I had breast cancer! I had a 2cm lump plus nearly 3cms of calcification which was pre cancer so opted for mastectomy with no reconstruction best decision for me! It was so quick just 4 weeks from being diagnosed to having mastectomy and in the middle of covid! NHS are amazing especially Royal Free Hospital in London Anyway I reason I have joined the his site is that because my cancer was hormonal I am on LETROZOLE for 5 years and it’s ruining my life!! I have pain in every joint especially my knees, weight gain, lack of sleep, dry sore mouth, low mood, hair thinning, hot flushes and more 😩 on pain killers and naproxen for inflammation! Anyone in a similar situation?

[Happyrosie]

Oh you sound like me! I was meant to be on L for ten years. After two years of the same symptoms that you describe I was switched to Exestemane, which was about ten percent better. But the joint and muscle pains worstened last year and, after a bit of toing and froing I’ve been switched to Anastrazole. The three are very similar but could have differing side effects.I’ve only been on the latest for a week and have had NO night sweats so that’s a bonus. The joint and muscle pains are slightly less I think. I’m giving it three months then a review. If I’m still troubled by the side effects then I can stop after I’ve been on them for seven years rather than ten. My lump was 9 cm and much more aggressive than yours.

My own doc has an additional degree in pain management so has been more than usually helpful in getting the pain under control. I had about a year of trying different pain relief but for about five years have been on (increasing) doses of Butec (look it up) supplemented by ibuprofen and now co-codamol.

Anyway you have my sympathy but you WILL get through it.

[Bunny286 in reply to Happyrosie]

Thank you so much

[LJcjpe252tl in reply to Bunny286]

Exemestane works a little better for me.

[wendle3007]

Hi. Yes the letrozole is causing joint pain and stiffness for me. I take glucosamine and turmeric which frankly don't seem to be helping but I'm afraid to stop in case the pain is worse without them! In the last 2 weeks I've started moringa tea but no improvement so far. My oncologist as written to my GP to get referral to rheumatology and I'm waiting for that.The only pain relief I use is Voltarol gel and occasionally ibuprofen- I'm trying to avoid regular pain killers because I'm afraid of addiction and also, once codeine is no longer effective, the next stop is morphine.

[Kdiet]

Letrozole can be hard. Have you tried Accupuncture? It really cured my hot flashes and sleep problems. I like it also because you do not invest it.

[Jillyannepope28]

Hi Bunny x sorry to hear you are experiencing joint pain etc x I have been on letrazole for 6 years and previously 5 years on tamoxifen I do suffer joint pain but checked it out and I had severe arthritis and needed a THR lol 😂 I take naproxen too to help as sometime I feel like I have been run over x still have to wear a wig as this affects my hair and is so thin x it’s the gift that keeps on giving lol 😂 good luck and keep well x from a fellow survivor x x

[Bunny286 in reply to Jillyannepope28]

Hi thank you for sharing your story I will see what they say at my next appointment but I think I will just have to get use to living with joint pain 😩 x

[Kruza]

I have joint pain as well especially shoulder joints. Been prescribed a steroid for 14 days.

[Bunny286 in reply to Kruza]

Hi I hope the steroid gives you some relief

[Fran4]

I have been on Letrozole since May 2020 and before joining this website had convinced myself my joint pain and now feet pain was me just getting old (I’m 72 in a few months). I had been quite fit until recently so I think it had taken Letrozole a little while to catch me!Reading yours and the other member comments makes me feel less alone,

[Bunny286 in reply to Fran4]

Hi Fran 4I feel exactly the same the pain is so bad mainly when I get up from sitting down. Walking up/down stairs and also in bed. If I could walk around constantly all day it would be great! The naproxen that I take takes the edge off the pain but really I’m just learning to live with it 😩 I am still living in hope that these terrible side effects will subside a lady told me for her it took 2 years! So I’ve done one! I know I could try alternative tablets but they all carry horrible side effects. Well here’s to the next year!! Keep in touch and let’s hope pain isn’t apart of our lives for too much longer 🤞

[Fran4]

Thank you for your reply it all helps. As you can see my 2 years will be up in May so here’s hoping. Yes I feel the same about alternative tablets - I’m going with better the devil you know at the moment. Take care

[Clyde12]

I had aggressive breast cancer with spread to lymph nodes diagnosed in 2014. I have been on letrozole since 2015 and hope to be on it til I die. It has kept the cancer at bay. Yes, I’ve all the pain described specially in my hands and feet but I’ve been told that this is due to lack of oestrogen. To me the pain means the tablets are working at keeping the oestrogen away so I’m prepared to put up with the pain. Different brands of letrozole made the pains worse because of additives and for over a year I paid privately for Femara which is the same as letrozole but with no additives. It was expensive to buy (via the GP) but though I still had pain it was far better than letrozole. My GP asked whoever he had to ask and I was prescribed femara on the NHS. I hope this is helpful. Best wishes.

[Bunny286 in reply to Clyde12]

Hi clyde12This is SO helpful and promising thank you so much I will have a chat with my GP to change brands! You are an inspiration take and will speak again x

[Clyde12 in reply to Bunny286]

It cost about £130 monthly privately which I paid for almost a year and the GP said he would ask his ‘superior’ if I could have it on NHS cos I was so much better without the additives. Good luck to you.