Advice from post chemo posters please

Afraid I'm not in the same boat as you and don't have any words to help but just wanted to send you a virtual hug. Hopefully someone will reply xx

Are you on Letrozole as I felt like a 90 year old woman getting up out a chair when I was on it? I’m temporarily off it whilst on chemo but the thought of going back on it and feeling like that for 5 years is scary.

Thanks Tired Minion appreciate the virtual hug! OrangeAngel no I’m not on any treatments other than phesgo, my cancer was oestrogen negative, very slight progesterone positive but nothing they were really concerned about and HER2 positive, it must be hard knowing you’ve got to go back on it if it made you feel ill, feel for you x

Hi Anna12345. I finished my Phesgo at the end of June last year after lumpectomy, chemotherapy and radiotherapy and I was absolutely exhausted and wondered when the dreadful fatigue would lift . Like you I was exercising as much as possible - and then snoozing every afternoon! Was desperate to know if it would get better and saw a post from somebody who said that it took about 6 months after finishing Phesgo for the fatigue to lift . She said one day she noticed she didn’t feel as bad . It’s gradual but it does happen! I no longer need a sleep during the day and yes it took about 6 months and yes I do still sometimes occasionally feel that crashing tiredness but it’s usually when I’ve done too much .10000 steps a day is a lot for the stage you are at but I understand why you do it ! 
it does get better . I found a combination of 500mg of paracetamol and 200mg ibuprofen taken together worked for pain .It really is early days for you but it does get better . I am just back from an hours keep fit in the park - 4 months ago I would probably have cried at the thought! x

Thank you so much for responding. Interesting! I’ve seen so many people say they had zero side effects from the phesgo that I’d pretty much discounted it. It would make sense that it has some effect, of course I’ve had it along side the chemo up until November and then had surgery so I’ve not really had much chance to see what it’s like just on it’s own. I’m sure it’s not helping that I’m having hot flushes at night and therefore not sleeping great. The naproxen does seem to have helped a bit today, thanks very much for your help x

I do think Anna12345that you should get in touch with your oncology team and speak to them about your symptoms. Hopefully your BCN is approachable and helpful . You need to know if  your symptoms are expected side effects and how to manage them . Don’t just carry on . I have readily available medical help in my family , so I was reassured about my symptoms but if I hadn’t had that I would have contacted my BCN . You should speak to them today . x

Thanks Moppers funnily enough I’m in getting my next phesgo injection today, hopefully I’ll get a helpful chemo nurse to speak to, it really is pot luck, some are amazingly helpful and others not so much so. I have found that since I’ve had chemo and surgery the BCN team ( my named nurse left and wasn’t replaced) aren’t quite as helpful as they once were, I’ll see how I get on today and if I’m unlucky I’ll email them, thank you x

Good to know Anna12345 that you can speak to somebody today . If your chemo nurse doesn’t have any answers , she should get in touch with somebody who does . I would expect her to contact your team and not that you should have to email them . Good luck! x

So. Spoke to a nurse and she was very sympathetic and listened but said she wasn’t sure. She said to keep a daily diary from today as to how I feel to try and offer some proof either way. She feels my RA diagnosis may be a factor, maybe it’s exacerbating a side effect. So I’ll give it a go and see what I think, she also said to keep taking pain killers xx

Doesn’t sound very helpful - sympathy although welcome doesn’t do a lot when you’re in pain .Also if your rheumatology team say your pain isn’t related to your RA I would believe them . I would have thought that oncology would take note of their opinion and explore the side effects issue - maybe that email is needed?
I hope you get some pain relief . No wonder you are feeling so exhausted .  I think the cumulative effect of all the treatment is so mentally and physically demanding and we tend to think once the chemotherapy is over the tough times are finished so we should be recovering but you have been through a lot and are still having treatment . Try to rest from time to time if you can - your body needs it and it will help speed up your recovery . xx