Letrozole

Hi I’m new to this forum.  I have had breast cancer twice, 2nd time round was in the same breast.  Because of this I decided to go for a double mastectomy to avoid a “3rd” time.  First time round I was put into Tamoxifen for 5 years, apart from the common side effect of hot flushes & mega weight gain  I felt well on then.  However, I’m now on Letrozole, have been taking them for just over 12 months and am experiencing just about every single side effect listed and more.  Recently I have been getting excessive sweating, dull like growing pain in my left leg from hip to  knee, excessive fatigue and more recently bouts of Vertigo & Tinnitus which are so debilitating I keep having to take time off work.  I’m interested to find out  if anyone else is experiencing this on Letrozole?  I also have aching joints which I can cope with, excessive itchiness all over the body, mainly at nigh but I take antihistamines for that.

With all of this going on it’s making me feel like a complete hypercondriact... is anyone else experiencing all of this and how do you cope? 

I look forwards to your comments xx

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  • glad I read this. I have been on anastrozole 3 years and complained of joint pain. Was given a month rest then put on letrozole. Oh my god been on it a month and I just want to lie down and die cannot take this pain any longer day and night. Constant headache shoulders hips knees feet hands. And I have a good pain threshold. Not taking it again 

  • Update my Doc took new blood test after I stopped taliking Letrozole. My liver enzymes had risen whilst on it, they went back to normal once I stopped taking it! . No more Letorzole for me, still have bone pain 

  • I found it took about 6 or 7 weeks after stopping the medication for bone & joint pain/stiffness to cease.

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    Hi Claire,

    You're lucky in that your bone and joint pain have gone. I stopped taking Letrozole in July 2017. I had 2 knees replaced while I was taking it and, I still get severe joint and bone pain.

    Kind regards,

    Jolamine xx


  • I stopped taking Letrozole in 2017 after too much bone pain, I had a shoulder replacement in 2018, a knee replacement in 2019 and my other knee is being done in January 2020. So many reports of bone pains yet still it is prescribed.

    for a while I took nothing then a new consultant gave a different drug

    I now take aromasin also called EXEMESTANE .

    dont just suffer, talk to your consultants, there are alternatives out there ladies.

  • Hello, I've just been diagnosed and need a lumpectomy. I'm eighty three and about to start on Letrozole. The side effects sound frightening so I came online and found this chat room. It seems like I'm right to be worried! I don't know whether to start on the pills or not. I'm not sure at my age whether I am strong enough for the operation and radiotherapy - mentally or physically.

    I wondered if anyone regrets coming off, or going on, Letrozole, and if anyone my age has any information generally.

  • I would say have the lumpectomy & then radiotherapy if you need it.  It doesn't happen together.  They wait until you're healed.  Radiotherapy didn't start till 3 months after op for me.  They need to examine what they remove to make sure they've clear margins & if you need further treatment.  If the tumour is oestrogen positive/receptive then you get prescribed, in my case, Letrozole then Anastrozole then Tamoxifen.  The new one is Exemestane.  Letrozole is to reduce the oestrogen level which the cancer feeds upon.  At 83 I don't think I would start Letrozole.  Unless it is to shrink it before removal?

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  • I would say have the lumpectomy & then radiotherapy if you need it.  It doesn't happen together.  They wait until you're healed.  Radiotherapy didn't start till 3 months after op for me.  They need to examine what they remove to make sure they've clear margins & if you need further treatment.  If the tumour is oestrogen positive/receptive then you get prescribed, in my case, Letrozole then Anastrozole then Tamoxifen.  The new one is Exemestane.  Letrozole is to reduce the oestrogen level which the cancer feeds upon.  At 83 I don't think I would start Letrozole.  Unless it is to shrink it before removal?

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