Letrozole users

[wnicola31]

Hi is there any letrozole users here? Wondering about people's side affects?

[GINI-54]

Hi, I’ve been taking letrozol since June, the main side effect I’m struggling with are the hot flushes, the water just pours off me, it’s at its worst for a couple of hours after I take it, then it settles down. I also get some joint pains but not too bad, and worth it as the lump in my breast has started to shrink since I’ve been on it.

Xx Gini.

[choconut56 in reply to GINI-54]

Been on it just over a year .aching legs swollen ankles hot flushes .im 62 never thought I would have to put up with them again .i did have very bad mood swings but they seem to have settled down .oh yes and some weight gain

[Lily-Anne]

Hi

My experience of Letrozole isn’t a good one. I took them for about 3 weeks but was suffering with dizzy spells, breathlessness. We started to record my bp and it was high or low. If I took it after a shower it was really high so I spoke to GP and oncologist both said to keep with it. In the end I stopped.

I saw my palliative care doc two days later and my bp was so high I was at high risk of stroke. All my symptoms together raised the drug company markers and my doc had to inform them of my reaction

It’s two weeks since I stopped and my bp has settled down now I’m starting to feel better.

I was disappointed that it didn’t work for me. I hope you have a better time but do look out for side effects

LA xx

[Bliney]

Started taking it in the morning with breakfast. Terrible side effects, splitting headaches, dizzyness, blackouts. Then by chance another patient mentioned that she takes it last thing at night so I tried this. Much better, symptoms went. I now just have night sweats and hot flushes but I can cope with this and it may be working - hard to tell. Might be worth trying to persevere.

[AlisonBoyd]

I've been taking it for about 8 weeks and the main side effect for me is fatigue. IAlso get some hot flushes and a bit of muscle soreness. Persevering with it to see if it can help stabilise my cancer (I have primary peritoneal cancer).

[Bluel]

Hi I started taking it a few months ago...main symptom was fatigue and joint pain and it sometimes sent my heart into AF. My onco changed me to anastrazole but after a few days I could hardly walk with joint swelling..so back on letrosole. Taking it last thing at night has helped. Still have fatigue and some joint pain and fewer heart episodes but it's bearable. No idea of long term effects. I think each drug has different effect on each of us...explore what's on offer and see what suits best. Very best wishes, Lesley x

[juliamillen]

Only been on it a week but so far no side effects to report. Good luck with it. I have to have a dexa scam to check my bone density as it can thin the bones.

[Btte]

I have been taking Letrozole for a year, just had five weeks off I was hoping I would feel better with regards to the fatigue and breathlessness, it hasn't made any difference so have decided to go back on as they have kept the cancer stable. Weight gain mood swings muscle and joint pain a general feeling of being unwell, I persevere with them as I didn't want more chemo. I guess I just have to come to terms with the new norm some of you talk about. I think you have to try for yourself we all are different in the way we cope. Love Bridie

[Hidden]

I took Letrozole for a few months in 2016, I didn't have any side effects but then it didn't work at all!

Good luck with your treatment, Dawn