Hi everyone, this is the first time I have posted though have accessed this wonderful forum since my initial diagnosis in August 2023.
I had surgery, chemo, Herceptin, radiotherapy and am now on Letrozole for 5 years. I returned to work once my chemo had finished in Feb last year. My issue is the awful fatigue I’m feeling. Work is a real effort at the moment, which is directly attributed to the fatigue alongside some brain fog. I thought the effects of treatment would have improved by now, as I finished treatment in May but it isn’t any better. I try to look after myself as best I can with diet and exercise. I’m just wondering is this a common problem post treatment? Thank you in advance x
2 Likes
Hi @denib i am also HER2+ and was diagnosed in May 2023. Had surgery then chemo/herceptin, now on Letrozole and Zoledronic acid. Finished Herceptin mid September 2024, so 4 months on.
I was teaching in a primary school covering teachers planning time. I was signed off from the beginning of my treatment. I’m 55 now and suffer with fatigue, brain fog, aches & pains, hot flushes (heat surge for me ) and now have cording ( I’d complained since Feb24 about pain in the area and it took 3 physios until Nov 24 to diagnose it). In February I had the option to take redundancy from work, so I applied and was accepted. I’m still signed off, I sleep terribly and struggle to get up in the morning. I would not be able to work with the side effects of my medication and the fatigue.
I try to exercise but struggle to lift any weights, physio advised against it. I walk and do light yoga and tai chi. After 21 months I had hoped I would be back to ‘normal’ but I’m not. I also think there is a psychological aspect to our diagnosis that isn’t fully resolved. I’ve had 2 lots of counselling but still not fully ‘dealt’ with my diagnosis. I volunteer on this forum to try to help others and hopefully it helps me.
As you are HER2+, I wanted to signpost you to a thread that has been going for over a year with others. There are people at the same stage as us, those just on Phesgo/Herceptin/Kadcyla and some still having chemo. They are a lovely bunch.
It’s probably the letrozole, some people get bad side effects, it sounds like you have a couple of them.
Maybe try a different medication!
Trish
2 Likes
Thank you naughty_boob, it’s reassuring to know it’s not just me feeling like this. I’m actually planning on retiring in December, a little earlier than planned but needs must x
1 Like
Yes, I think it is. I have tried several brands of Letrozole and a different times of the day. I’m going to ask for a 4 week holiday from it and see if I feel better. Then if the symptoms go away I will discuss changing to different medication. I did speak to my team some time ago and they were reluctant for me to stop Letrozole.
2 Likes
Hi denib,
Yes that’s a long time to still feel so exhausted. It is probably down to some of the issues already mentioned. But…. I felt terrible after each of my two separate bouts of breast cancer. After the first it turned out my thyroid had packed in, and thyroxine brought things right. After the second I couldn’t get well and was eventually diagnosed with coeliac disease. It seems that cancer treatments can trigger latent autoimmune disorders ( I have heard this from other people as well). So if you haven’t already, you really should go to your GP and asked to be screened for other conditions. It is just a simple blood test. I think it is natural to assume everything is down to cancer treatment and occasionally it isn’t.
Hope this might help you, or somebody else. All the best and I hope you feel better soon.
Sending hugs,
Eily
1 Like