Letrozole

Hi! I've been taking Letrozole since September 2016. Please do try to persevere with it by changing brands etc where possible as it does make a difference! I've been told today (and the same last year) that instead of taking it for 10 years as I was originally told, they intend on stopping me from taking it after only 5 years. It's interesting to me that you have only just started taking it and you've been told you'll do so for 10 years! It looks like I will have to fight for my life this time next year! 

Yorkshire_defector Just out of curiosity, how long have you been told that you'll take Letrozole for?

giglingertie

Its 10 years for me so far, did they tell you why they were shortening your term?  Maybe there's new thoughts/research??

Yorkshire_defector The oncologist seems to think this is Barts hospital protocol - in other words it's a money saving exercise! Postcode lottery again. Last year  (same onc) told me it was because of a trial. When I asked him which one, he told me to 'Google it)! I've told him today that I want a meeting with the team to discuss it. He told me this would have to be next year in August. His reason for this is that they will have forgotten about it by next year if we have it now! I was Stage 3/grade 3 

giglingertie you are right to fight for it. It must be really difficult for you that you were originally told you would be taking it for 10 years and that your team can then change their minds. Why is that due to a trial? It is fantastic that you have done so well on the Letrozole and I would have thought the success is all the more reason to continue with the treatment. I wish you all the best in your efforts to persuade your team. I have also recently started on Letrozole and have been told that it is potentially 10 years, depending on how things go. 

@Procta I also started taking Letrozole in April this year and I am on the Sun Pharma brand. I have awful joint pain all over. It does ease when I move around but if I am still for any length of time I seize up. I wake up regularly about 4 hours after going to bed feeling like a piece of chipboard and hurting all over. However, as it does ease to a good extent on movement, I am determined to continue. Do you get muscle aches as well? I find that the slightest exercise will make me feel like I have done an intensive workout and that old injuries (like tennis elbow) seem to return and be magnified. I also had lower back strain which was hard to shake off whilst on Letrozole but it did heal eventually.

Currently I am also suffering with indigestion. I am wondering if anyone else has had indigestion with Letrozole?  And sleep disturbance? I seem be awake every couple of hours throughout the night.

The hot flashes are fairly intense but I can cope with that.

I will ask for a different brand next time but have about 6 weeks of Sun Pharma tablets left to enjoy first.  Still determined to continue, the potential gain from AI's for me is too great to even think about stopping. I also think it gives me some reassurance that I am taking a medication to be honest.

I would be interested to hear what you are told about supplements that are OK to take. Thanks.

Sending hugs. x

PictureThis2 I take Naproxen for the pain. I also take Tumeric although no one seems to know whether it should be taken with Letrozole or not..... I try to do weight bearing exercise  (even though it's exhausting and painful!) as this is good for combatting osteoporosis! The side effects of Letrozole include insomnia....I wake up a lot in the night with hot flushes/heel pain/headaches and needing the loo! 

giglingertie sorry to hear about the joint pain. yes its an ongoing challenge keeping the exercise up but its worth it and as you say, the weight bearing ones are so important. I have read lots about turmeric but I haven't managed to get any conclusive answers about any sort of supplements from the NHS. Your nocturnal habits sound exactly like mine. Gone are my days of actually sleeping through the night. Letrozole likes to wake me up nice and regularly, about every two hours for one reason or another. Sending hugs x

Hi everyone, since the end of my chemo In January my hair hasn’t really grown back too well! It’s there but thin and still short. I was just reading up on it and discovered that Letrozole can cause thinning hair, has anyone else experienced this?
Just to add that I was also experiencing painful knee joints and after reading moomy ‘s advice to try Clarityn I did. Pain gone but wondered if it was just a coincidence. Ran out of Clarityn for a couple of days and I’m like an old lady again so for me it works! 
Hope you are all feeling good!! x

Hi picture2 your pains are mirrored by mine.With regards to the indigestion I take omprazole 20mg every day and never get indigestion so worth asking for that...When I talk to the oncologist I will let you all know what he says about supplements including hemp gel which someone recently recommended.

Good luck