Stopping Letrezole .

Hi Imelda,

did you discuss this with your BCN? Have you discussed it with your GP? Or even thought about talking to the Mac nurses on the phone line? (0808 808 0000) I would hesitate to stop without talking it through fully with a medically qualified person. What is your oestrogen status? I know mine is 8/8 so I’m just going to battle on, walking plus supplements seem to ease the aches. 

Hugs xxx

Hi there - I went through treatment similar timings to you (finished chemo July 18) and also struggled with the side effects from Letrazole. My consultant was very sympathetic and said there are other options so worth trying them before giving up on the oestrogen blockers. I am on Arimadex now and although I still have stiffness and ache in the morning it is much better than letrazole. I did get headaches and insomnia for a couple of weeks at the beginning but that settled and I am now able to walk more and have started to go to the gym. He said if Arimadex didn’t suit then to try Exemestane and if that wasn’t good Tamoxifen (even though I am post menopausal). I would certainly speak to your consultant and get them to switch to something that suits you more. I did try Femara which was better than the generic letrazole but not good enough for reasonable quality of life. If you can go to the reception of your oncology dept and say you really need to see someone before you go away. Good luck! Let me know how you get on. 

Annie6

Can I please ask how long you tired Femara for?   After 10 months my side effects on Letrozole were unbearable plus getting the same brand in my area is a nightmare.   My GP referred me back to the Marsden who said to have a two weeks break from anything then to try Femara.   Within 4 days of stopping Letrozole all together my side effects were dramatically improved and I was dreading starting the Femara which I have been on now for 3 days.  I have been given just one month to try then I need to report in and if Femara is needed long term I need to pay for it as my local health authority wont and it cost around £80.00 per month.  I m not happy about that but if my life improves because of it then I will be willing to pay.      

I tried Femara for about three months. The aches and pains gradually got worse to the point of intolerable. My Trust were ok to pay for it, however I have found Arimadex so much better (brand Teva). I think it’s a case of trying different ones until you find the least unpleasant. There are other brands of letrazole you could try as well. Which health authority are you under? I’m in west London. If it works for you could the Marsden not prescribe for you?  I hope you find one that is better for you as it really makes you feel about 90! I sympathise. 

Spoke to my Breast care nurse yesterday re; stopping letrezole and she has told me that my consultant has written a prescription for Tamoxifen for me !    Best news ever so fingers crossed for a goodbye to aches and pains , tiredness and generally being fed up .    I was on Tamoxofen 25 years ago and absolutely no  side effects so heres hoping .    Thank you everybody for your lovely helpful replies and yes I will keep you all updated .  Imelda  

Hi Imelda,

I'm so glad it’s been sorted for you and that there’s a med you can take which suits you!

hugs xxx

So pleased you can try something else x

Hi there 

I've been taking Letrozole (Fermara) for 7 months and I have had awful aches and pains, initially crippling. My oncologist has prescribed me a supplement, I take 1 tablet a day. The discomfort hasn't disappeared but it seems to be helping, I don't know what it is in the UK but on the packet it says: 

Normorelax: Food supplement based on Magnesium, Tryptophan, Boswellia Serrata Casperome® with Niacin 

and Vitamins B2 and D. Magnesium, Riboflavin and Niacin contribute to the reduction of tiredness andfatigue and to the normal functioning of the nervous system;

Magnesium and Niacin also contribute to the normal psychological function.
Boswellia counteracts localized states of tension.
Vitamin D contributes to the maintenance of normal muscle functions and the immune system.

Hi Moomy,

May I ask what supplements you take to help with the side effects of Letrozole? I have sent for some Starflower oil after reading it helps but I don’t know of anything else,

Thanks x

Hi NellieJanet,

i take Loratidine (began when I started taking Alendronic Acid almost 10 years ago and proved it helped) and also Glucosamine with Chondroitin approved by BCN and will be thinking of Vitamin B12 sublingual as I’ve read ihttps://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e21679t can help with joint pain too. My worst joints are ankles and feet, and wrists at present, walking helps but very stiff when I start. 

hugs xxx