Letrozole

[KittyT]

Hi thanks for all the info about Letrozole. I have been on it for seven month and am finding the joint aches almost intolerable. I am also piling on the weight (a stone since I started taking it) and having horrendous hot flushes. I feel like I've aged 20years.Do the alternatives mentioned here also have similar side effects as well as the joint aches.

[Kate21]

Hi Brendima, it is a good book, couldn’t agree more about dairy, and being aware of the source of any meat you eat. Not only does milk contain oestrogen, it isn’t as good a source of calcium as many believe! Are you aware of foodforbreastcancer.com? An excellent website if not, Kxx

[Brendima]

I bought a fantastic book called Take Breast Cancer off your Menu. It tells you all about the anti cancer foods. I highly recommend it. I no longer use cows milk and eat organic meat Meat and milk is full of oestrogen!!

[Brendima]

I am exactly the same. Pain at night. Heavy legs. I can’t run, can’t bend down. I keep stopping Letrozole and then starting again. I tried Anastrozole for 2 months but that was worse pain. I have just read a brilliant book called Take Breast Cancer off your menu that explains which foods are anti cancer. I have now started eating the healthy foods and take grape seed supliments. I highly recommend you buy this book.

[Melena]

It is good to know that you are staying on Letrolzole as I have been wondering what will happen after five years. I have been on it for a year now and aches, etc are settling down. I suppose we are all different.

[maltomlin1]

I've been on letrozole for over 6 years! Initially I found the side effects terrible but over the next few months they decreased...........when I was supposed to finish after 5 years I asked my onc if I could stay on for another 5 years........she's a great onc....into research etc............and she allowed me as long as my bone density didn't suffer.

I've given the pills more credence since my friend was dx with bone secondaries and was prescribed letrozole

[kzc01]

Hi

I was on Tamoxifen and had horrible joint pain.  I was taken off that and put on to exemestane which was even worse - joint pain, a 24 hour headache, tinnitis, chronic reflux and swollen feet.  I stopped taking it when I started to get chronic dizzy spells (they came in waves and made life impossible).  I am stil having the dizzy spells 4 weeks after stopping the meds.  My doc now wants me to try Letrozole and I don't know what to do.  My friends want me to try them but are they really going to be any different? 

K

[kar235]

Hi Ladies, have been given Anastrozole which I have been on for 6 days now and so far so good. Arm pain is still really bad but after a lot of complaining my GP is sending me for an X-ray today. Watch this space !

[Motherhubbard]

Good luck for Friday.

[kar235]

Hi ladies, I have an appointment to see oncologist this Fri, and have made a note of the other meds that u have all mentioned. Pain in my upper arm is now so bad I'm begining to think that I must have broken it, how mad is that. Really starting to effect my daily life, and sleep is almost impossible. Anyway, enough moaning, I'm still here aren't I? Will let u all know how things go, thanks again for all the support, keep well x

[Motherhubbard]

I found the only make that does not give me these pains are cipla. The closest to the original femera and the same coating. Also ask doctor to issue calcium with vit d. Dies help. I have been on letrozole since sept 13. Mine was left side too

[cyfrin]

I have been on Letro for just 1 week!  I already have bad knee pain and am waiting for a replacement.  Today I have noticed both knees are painful, as well as my righ shoulder.  I had a mastectomy on the left side.

I am thinking of stopping them as I have enough pain at the moment!  

Is there a natural alternative?

[Ann_R]

Dear Ladies,

Have you discussed other medication options with your team? There are other tablets that you could try and it certainly worked for me.

Obviously you have to make your own decisions but my consultant begged me not to stop. She said the death rate was escalating due to ladies stopping meds.

Regards,

Ann

[Sans61]

I to have stopped taking meds i was fed up of being depressed, in pain it was awful my friends think im crazy for taking the risk but i dont think i could have managed any longer :{

[SonjaT]

I have stopped taking all of the hormone therapy medication as well as painful joints my hands and feet where swollen, I am alot better now each week I improve, I decided that quality rather quantity life is better for me

[Ann_R]

Hi,

Sorry for the delay in replying. Initially I had terrible nausea and headaches with joint pain (which was fairly mild). I wanted to give up again and was told to have another two week break and then restart. Which I did and this time the nausea and headaches did not return. So like yourself initially I experience slight joint pain which is bearable and has not increased 10 months on (unlike Letrozole which got worse and worse). Good luck,

Ann

[kar235]

Hi Ann, Thanks for reply. What sort of side effects did u have with the Anastrozole? I had slight joint discomfort when I first started taking the Letrozole, which I could put up with, but 2 months down the line the pain was unbearable. They are aware that I have stopped meds so expect to hear from someone soon. Take care and thanks x

[kar235]

Thanks for your replies girls, they've been very helpful. Been off the Letrozole for nearly a week now and the pain has improved quite a bit, so am obviously thinking was the meds that was causing it. Will write down the alternatives u have given me and see what the onc has to say. Thanks once again for the help, and keep well all of u ❤️ xx

[Ann_R]

I had terrible trouble with Letrozole. I was told to stop taking them for four weeks and that this break would not put me at risk. So don't worry about a short break but don't stop meds altogether! I was put on Anastrozole and although the first couple of months weren't great things have gradually improved and a year down the road side effects are bearable. There are options that can be discussed with your consultant. Good luck.

[Motherhubbard]

I to am on letrozole and have been for a year, I have had bouts of joint pain and like you on the side that had not had surgery. I have worked out that different brands do effect. I have now insisted that only brand that suits is cipla. Hope that this helps.

[H144]

Hi I suffered with bad side effects when taking Letrozole ( mostly problems with my joints) and so after 6 months my oncologist put me on Aromasin (also known as Exemestene) instead. She said there was there was no difference in the effectiveness between the two different tablets. I have found Aromasin to be much much better and only suffer very slightly now with my joints.

[hazelmary]

Hi,

There are other aromatase inhibitors that you could try but I found, and others as well, it could be due to the brand of Letrozole if you are on a generic version. If you are lucky to be offered it, the Femara version of Letrozole might be better with less side effects.

I have just finished 5 years of Letrozole and whilst I wasn't completely okay on it I tried various generics and found Teva the best. Initially I was on Femara but once the cheaper generics came along that was it as the cost is so much cheaper although my Onc did say that he had written to GPs saying that he would like his patients to be given Femara where there were side effects if they were on generics.

I'm sure that you will give other posts regarding your problem.

Hazel

[kar235]

I have been on Letrozole for about 3 months now. Yesterday I decided to stop taking it due to pain in my arm from shoulder to elbow. I saw my GP last night who could find no physical cause for the pain and he suggested it was probably down to the medication. The pain is not on the side that I had my surgery. I am about to ring my oncologists secretary to inform her that I have stopped taking it. Does anyone know if there is an alternative to Letrozole ??. The pain in my arm has improved slightly even tho I've only missed 2 doses. Obviously I'm now worried that if I don't continue with the meds the cancer could return. HELP !!