Hi sjnut,

Welcome to Cancer Chat. I'm sorry to hear you're experiencing difficulties with this. It sounds like you've done the right things in terms of discussing it with your consultant and doctor - but keep doing this if you need to find anything out, and particularly if you're considering stopping it.

If you feel you'd like to talk things through with one of our nurses, you can give them a call on 0808 800 4040 (Monday-Friday, 9-5).

You can also search this forum for 'Letrozole' to find other discussions on here, in case this is helpful.

And we also have an information page on our website about Letrozole here.

Wishing you all the best,

Ben
Cancer Chat Moderator

Sjnut

Hi Sinjut I also have been on Letrazole for just over one year like you. Its tough know and the symptoms/side effects you get from taking this drug are not nice. I don't suffer with any vision problems like you say that you are,but I do have so many aches and pains running through my body, and yes it does affect my hands,I haven't much strengh in them now,and I find it hard to open things now,but I bought one of those things that help you open things. I do struggle with sleeping,and I have a number of other health issues  rotator cuff inflammation and Impingement in my right shoulder  , and I have arthritis in my shoulder ,/neck,knees,hands ,and elbows, and I have mild lymphedema in my right arm/hand, and planta fasciitis in my left heel ,which all cause pain. So it's hard to know,if some of the pain  ,is  the letrazole, but all I know I didnt ache ,feel.like I do now before I started taking it. I've now been diognosed with Vin 3 ( pre cancerous cells of the vulva) so I see a dermatologist and a gynecologist for that. But I've been told I will be on Letrazole for 10yrs so another 9 to go. I'm 65 now ,and will be 66 this November, so the thought of being on this letrazole drug till I am 75 is daunting,but then I'm so happy that I found my breast cancer early. Cancer has tried to get me,I had a right side bowel resection  where they took half of my bowel away and a small piece of my intestine, and my appendex,as its atrached to the bowel on the rigjt side ,that was in 2015,because I had pre cancerous cells. Then I had a hernia repair,as the bowel came through my stomach wall,then I broke both my wrists and was in two plaster casts,at the same time which was hard. Then I got gallstones ,was soposed to have my gallbladder out, but the surgeon didn't realise I had mesh inside my stomach,from my hernia repair, so said he couldn't do it and I was put back on the waiting list to see a specialistsurgeon who could hopefullydo the opp , li was left for over a year,in that time I started eating normaly  and as I didnt  seem to get any pain, or problems I decided not to go ahead with the operation as I'd really by this time had enough,so I've still.got the gallstones lol.  Anyway my decision is to stay on Letrazole  as there is so much cancer in my family,my son was diognosed with testicular cancer not long before I found my breast  lump, he was only 34,he's doing well ,cancer free  has check ups like we all do,from time to time. I  don't like the side effects ,but I try to put my positive head on,and tell myself every day just how lucky I am, as I'm still here,and I wouldn't want to stop taking the letrazole as its hopefully helping to stop cancer returning  yes I know there are no guarantees that it will stop it,but I have a better chance if it not returning  if I continue with the letrazole.  

I don't know if you know this,but there are many brands of letrazole out there and its the yellow coating on each brand that can be duffernt,ie differnt ingredients in this coating,and it this that can affect how your side effects are. I know you don't always get the same brand given to you and its trial and error at first untill you find one brand that you can tolerate.  I've found for me the Accord brand is the one that suits me the best,yes I still get problems, 

Muscle aches ,pains etc  but I've had some brands Cipia  being the worst I couldn't even get out of bed when i was taking it ,I was In sooooo much painwhike taking that,and had tonstop it,as it stopped me from functioning. 

When I go to get my letrazole prescription, if its not the Accord brand I sent it back and wait till the Accord brand comes in,I always order before I run out of letrazole  and my pharmacy is now going to let me order 2 mths supply at a time, which will be of great help.

What I did ,  I wrote down all the different brands I had taken when I was first put on it,I wrote down how I was feeling etc. And that's how I knew ,what brand of letrazole suited me the best . 

Good luck with everything  ,I'd talk it over again with your oncologist if you really feel your not coping ,he or she may be able to offer some help and advice.

Hi Jassoscared

thank you for your reply. I do hope you feel better soon. I had a small tumour removed and five lymph nodes, that thankfully were all clear. My biggest problem with all these side effects is that it makes it difficult to work. I'm a school science technician and I'm having problems with the weaknesses, swelling and pain in my hands. I've had my hands X-rayed and have been told I have chronic arthritis - I never had any of this before taking letrizole. I struggle to hold a pen, let alone make chemical dilutions. Now my eyesight is being problematic, blurred vision, multiple large floaters and cataract. After years priding myself for never be off sick I can't even get to work. I had a month off letrizole for my first eye surgery and all my pain went, I also slept 9 hour a night and felt my old self again. Back on letrizole and I'm falling apart again. The eye that was operated on is loosing vision, the other eye now has cataract. I will have to stop taking letrizole for the second eye operation because of the inflammation it's causing. If all my pain and swelling go away again I think I will take my chances x