side effects from treatment

Hi there, those side effects sound pretty tricky to manage. Have you spoken to your GP or oncologist about this?  It might be an idea to, to try and understand if this is letrozole related. I know some people have tried different brands of letrozole - whilst the active ingredient is the same, the fillers that make up the tablet can sometimes make a difference. Best wishes 

Hi, I was on Letrozole but, after  lots of research, realised  that only brands manufactured in northern  europe/uk  were any good for me. The fillers and half life times of cheaper brands  meant  unbearable pain and stiffness. Although I Was prescribed the original  medication,  I was being given generic tablets manufactured in India, Pakistan, China 

Eventually I was switched to Aromasin/Examestane by Pfizer. The side effects  have been oresent, but bearable.

Thank you - they have mentioned the brands before and I was on a 6 week holiday - so have gone back on them and I am thinking it could be brand related again, although I am not on the one I initially thought caused the most discomfort.  I have an app with my nurse in May and am going to go over it all with her to see what else they think.   

Thank you - I think it must be the fillers.  I know a friend of a friend has to stop letrozole altogether as her hip pain was so bad.  Thankfully mine is not and although I am managing it as they say, it can be very wearing some days.  I will mention the Aromasin to my nurse in May too.  Thanks again.

You are all so lucky to have a nurse you can speak to. I have to do it all on my own- even had to write my own 4 page care plan to submit to force the oncology department to do all of my follow up through the hospital - I didn’t get an oncology follow up for 2.5 years - had to organise it all myself. The tamoxifen was horrific. I’m about to try aromasin but the oncologist has already said if I have side effects just stop it - no let’s see if we can help… just stop it. Not even sure I want to start it now tbh. Too many comorbidities  - would rather have some sort of life - plus I got to go to work so can’t be ill . Now you know why I choose the mar I did for my ID

These side effects are very common with the tamoxifen, anastrozol,.metronome group.These are hormone inhibitors.  The joint issue ,or so I've been informed, is caused by  the lack of oestrogen. The joints dry out basically. Oestrogen keeps things moist. It's why we dry out after menopause.

The first time in Tamoxifen the told me it would give me an extra 17% protection against it coming back. I had a complete breakdown after 5 years trying to work and deal with the pain, poor memory , poor sleep etc. The second time after a month I said no. It was only giving me 1% protection. This time I'm trying to tough it out but it's hard. They left an affected lymph node in last time which doesn't help plus the other breast was triple negative not helped by these drugs anyway. 

My oncologist nurse has suggested that acupuncture might relieve some of the symptoms but at £50 a session I'm sort of hoping it doesn't work.

What makes it worse is people think when the scars have healed and the hair has grown back it is over and that is far from the case.

Sympathetic hugs for everyone in this vicious cycle.

So sorry to hear that you have had to go through that.  I have been so very lucky with all the support and service I have had and so very grateful.  I have now changed to Exemestane - month 2 and so far I think better  but waiting for a little longer to decide for sure.

Just had app for lymphoedema in left breast (surgery breast) - Will now start the lymphatic massage to see if helps.

I am feeling a little more positive now - but oh the moods with menopause.  

I hope you are better on aromasin and that things do get better for you.

I am so sorry to hear all you are going through.  I hope acupuncture does help, although can understand on the cost - is there no way to get this via the NHS for you?  I am not sure if you could change to or have already tried exemestane, but been on for two months now and so far I think better than letrozole.  The hip pain so far is not there.  Am holding out final verdict thought until a few more months, but letrozole did show pain sooner.

I have had all lymph nodes removed under left arm and today met with a lymphoedema nurse as having this in left breast.  The app I thought was very helpful and so nice to chat with her about it all.  I am away to try the lymphatic massage now and she had given me her email if anything.

When I chatted with her she had a great analogy on this cancer journey.  You are diagnosed, you get put on this mad train that you have no control on and then at the end of treatment you are just let off the train to get on with life. But it is not just scars healed, hair grown and away you go (as some may think) it is still a journey that takes at least a few years to start to come out off with all emotions etc that go with it, as well as trying to live with hormone treatment and its effects. 

I had to agree completely - I find my emotions are very up and down and feel sometimes if anyone just pushes the balloon once more - oh dear.  Then other times all what I would say was normal.  Oh what removal of estrogen and accelerated menopause does to you.

Sending huge hugs to all.