Letrozole

Hello, your story sounds like a blueprint of mine! Although I've been taking Letrozole for only 3 weeks and I seem to be OK as yet. I'm sorry that you are having trouble with Lerozole, maybe speak to your breast nurse & ask if there is an alternative medication. I'm sure i read that there is on one of the links on here.

Re 'cording' I'm presuming you have had physiotherapy post op where massage and stretching can help. 

Thank you for your reply, much appreciated. My doctors have been no help, stopped taking meds, have a phone appointment with breast nurse this week. Re cording, doing self message and stretching.

Hi, sorry you're having such a bad time with side effects. I have heard some people say that trying a different brand has helped them, so maybe that is worth discussing with the pharmacist.  Best wishes 

I'm on exemestane, so similar. My BCN and oncologist said it takes 6 months for side effects to settle. I actually found it was a bit longer than that as I got severe wrist pain a few months in that lasted 6 months and then went away completely.

You also need to play around a bit with brands, but that takes a while. I didn't settle on a brand until my side effects had settled as it was then easy to tell when a brand didn't agree with me. I now have a note to have one brand only and my pharmacy are brilliant at getting it for me.

Good to read that side effects settle after 6 mths, makes it more bearable for those starting out. X

Hi just had two months of letrozole, skin rash, mood swings, but have been advised do to keep trying for a few months. Has anyone been on it for the five years I have been prescribed? 

Also having violent red itchy rash from my radiotherapy treatment ..... however, feel stronger and fitter. 

Hi, I’m new here and signed up because of acute pain in both wrists still after 12 months of Letrazole. Treatment caused me only minor issues but this drug has left me feeling utterly diminished, so painful and so many things I now struggle to do. Have been told to come off it for 4 to 6 weeks and now in week 3 and no improvement. Has anyone else had this problem and have you successfully changed medication.

Hi there I'm new to letrozole on it for nearly a month I was feeling well and energised after my operation then put on letrozole omg feel like I've been hit by a bus body aching so bad my hands wrists hips even my teeth ache I myself don't know whether to carry on I don't want the cancer to come back but I would like some quality of life its one them isn't it there is other types I know and I've heard nightmare stories about those but I believe letrozole is the best one for her2 positive cancer iam taking tumeric and starflower  I suppose time will tell if it gets any better it's early days for me but it it maybe worth taking starflower and tumeric see if it helps wishing you well hope you get better xx

Hi Fiona, thank you for this. I agree with you, quality of life is severely diminished now and it’s something of a dilemma knowing what to do next. I read on here last evening that someone is taking antihistamines to help with the joint pain caused by swelling but I’m somewhat anxious about self -medicating. I’ve had a month wait to see my GP. The BCN has been great but anything that happens now has to be organised by my GP. I’ve also never had a bone scan so don’t know how Vulnerable I am, that has to be ordered by the GP too. I’m seeing her on 11th April so maybe then something will happen. In the meantime, I’m just waiting and hoping that this period of ‘respite’ actually turns out to be so. Thanks for taking the time to respond and l hope your circumstances improve soon. X

1. Hiya Lah  I did have a bone scan before all my treatment started but because I'm now on letrozole they want to give me zoledronic acid to prevent problems with bones it attaches itself to the bone cells and slows down the rate of bone change but you have to have good teeth and see your dentist first honestly its never ending I've also got to go for an ecco scan as they think herceptin might have damaged my heart as I'm supposed to have 3 more preventative injections for someone like me I absolutely hate injections I must have had 80 odd by now anyway must stop moning there are much more people worse than me I've had such amazing care down in Cornwall take care and good luck with your doctor xx