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

  • Hi clairebr did you just stop taking them altogether without permission from the consultant or did he tell you to. stop taking them did you also have bad side effects from the tablets kind regards judpet

  • Hi clairebr think I might have misread your last post sorry did you mean you changed from letrozole to anastrazol and it took six weeks for the letrozole to get out of your system if so are you ok with anastrozol now kind regards judpet

  • Actually I moved from Letrozole after one year, after complaining about pains & aches, then onto anastrozole for 3 or 4 years (not any better) then moved onto Tamoxifen.  It was only after 6-8 weeks on Tamoxifen that I was able to move again.  I did keep stopping anastrozole myself for a month at a time but because I was doing this the consultant recommended moving me onto tamoxifen which I wasn't keen on because of side effects friends had, but I've definitely been better on Tamoxifen.  I was not going to carry on with anastrozole.  Quality of life was more important than being crippled.

  • Thank you for your prompt reply could I ask when you stopped taking them fora month did you feel any better also my main side effect is nausea did you have that as well I can’t seem to get rid of it kind regards petjud 

  • I didn't see an improvement after a month.  I did have light nausea first thing in a morning or just after breakfast, but nothing major.  It was the pain & stiffness that I suffered from.

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    Hi Judpet,

    I'm glad to hear that you have switched to Anastrozole. You are probably expecting too much too soon. As Claire has already said, the Letrozole will continue to be in your system for a few weeks still. It will also take a few weeks for the Anastrozole to start to take effect, so don't worry too much about not seeing an improvement yet.

    I sincerely hope that you do see a result soon. If not, have another word with your oncologist and see what else s/he can suggest.

    Kind regards,

    Jolamine xx

  • I have read the sandoz brand of Letrozole is no longer being made, which would have been my first choice aside from Femara, which is so expensive, so hard to get prescribed. So have been looking at the ingredients of Teva and Accord letrozole as the ones my local pharmacies seem to have commonly. I want to choose one which will has less side effects, so decided to look at their ingredients. The ingredients are the same, except Teva has two extra E numbers Accord doesnt have. Tartrazine E102 yellow colouring, the side effects include anxiety, migraine, depression, blurred vision, itching, general weakness, hot sensations, a feeling of suffocation, purple skin patches, and sleep disturbances. It also has E132 which can raise blood pressure slightly. 

    Accord only uses Iron yellow oxide E172, which doesnt seem to have any stated side effects. It also has Hypromellose E464, used as a binder or slow releasing agent, and also used in opthalmic solutions to increase eye lubrication. Teva doesnt have hypromellose.

    So out of those two, i would prefer to take accord, and not have the added side effects of the 2 extra E numbers, especially the tartrazine E102.

    Femara has the same ingredients as Accord, other than having a higher macrogol content of 800, to Accords 400. Macrogol is used for constipation.

    It was interesting comparing the ingredients.

  • I now take turmeric for joint pain, which seems to be working. I also take sea buckthorn capsules and since taking these I don't feel so anxious or low. Might just be a coincidence. 

  • I'm finding all this very interesting. I started on Letrozole about 9 months ago and initially thought the side effects weren't too bad. I already have arthritis so the increased pain was hard to definitively blame on the drug. However, as time has gone on the spread of joint pain has got worse and recently I started to bleed. I took a week off the drug and everything started to improve. Changed from Teva brand to a different one but all the side effects are back with a vengeance. Oncologist is insisting on every conceivable test to try to find some other reason for the problems but I have chosen to stop again and the effects are lessening. I'm still going through the tests because at some point they will have to admit it's the drug and I think it's only fair for other people that this can't be covered up. 
    I'm contemplating whether to try a different drug if they offer it, which I think my gp will back me up with, but I honestly don't know. I feel I lost last year due to the attempts to kill me with the chemo and if I only have a short time left I'm really not prepared to waste it struggling from one set of loathsome side effects to the next.

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    Hi Sajom,

    Welcome to our forum. I am sorry to hear about the problems that you are experiencing with Letrozole. I have had 2 bouts of breast cancer. The first was 11 years ago and the second was 10.  I initially had a lumpectomy, followed by Tamoxifen. When I had a new primary in the same breast the following year, I had a double mastectomy, followed by Letrozole for 6 years.
    Like you, I was already arthritic, so it was hard to say what had caused it to get worse. I eventually had to have bilateral knee replacements and 5 eye operations. I understand that, even when you stop taking this, it takes about 4 weeks for it to get out of your system, so I wonder whether there were in fact any changes, when you found things so much better when only off the drug for 1 week?  It is all too easy for us to convince ourselves that things are much improved, just because we expect them to be.

    Have you discussed the fact that you are coming off the drug sometimes with your oncologist or consultant? It is always worth keeping them abreast of what you are doing. There are other drugs that you could take, but most of them have side-effects. Have a chat with your care team and see what they suggest.

    Kind regards,

    Jolamine XX