Inoperable stage 4 nsclc, diagnosed March 2020. I had combined chemo and immuno at the beginning, I had to come off them at different times because each caused problems to my health. I later had radiotherapy.
I'm now in the position of my tumour being stable and there nothing else that is highlighted. 🤞 it stays this way for a lot longer.
I went to my GP, had bloods done, no problems there.
My problem is that I am so tired all the time even though I get plenty of sleep, I've got no energy and I ache all over.
Has anyone else found this or has anyone got any ideas what will help.
Thank you in advance.
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Fighting4life
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Welcome to the forum and sorry to hear of your ongoing symptoms. It is encouraging that your tumour is stable and bloods are normal. Symptoms such as tiredness with aches could also possibly be a viral illness and if you still feel the same or worse, it may be worth going back to your GP to be reassessed or referred to a specialist.
You could perhaps also discuss this with your lung cancer nurse specialist or ask for an appointment with your oncologist through their secretary, if nothing else it may give you some peace of mind.
I assume your diet is well balanced and maybe check with the GP practice that your B12 blood levels were checked.
If your treatment was recent then these could be side effects, your symptoms may not have anything to do with your cancer, but it would be worth considering going back to the doctor.
We have an online support group through zoom and you can view and register for these through this link:roycastle.org/help-and-supp... or you can email our support coordinator Ellen Knapp at ellen.knapp@roycastle.org
You are welcome to contact us on our ask the nurse helpline if you would like to chat on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
Sorry to hear of your exhaustion and lack of energy. So wearing - some patients experience fatigue after radiotherapy but it could also have other causes. I remember telling my respiratory consultant how tired I was and how despite sleeping, I wake up tired. He sent me for a sleep study test and it turned out I have sleep apnoea which means I wake up for small amounts of time during sleep which means it isn't restful even if it's for a long time. Fatigue can have many causes - when I'd reported it a couple of years ago I had blood tests and was told it was a deficiency in vitamin D and folic acid and given a 4 month course of each. Worth pursuing with your doctor as GPs often only do basic blood tests and we assume they've tested lots of things when they may not have done. If you're still under an oncologist or have a clinical nurse specialist lung nurse, worth asking them for advice too. Are you active? I've always found that keeping active improves energy levels paradoxically as we assume if we are active it will be even more tiring but sometimes we can be mentally tired but physically not - and I always have better sleep if I've swum or walked during the day. hope you get some answers soon.
Congratulations that you are stable and all your blood work looks good 👍. I too have the fatigue and body aches and pains (but for different reasons), and just getting over pneumonia. I am doing imfinzi immunotherapy and I definitely think the fatigue is a side effect from it. Though my body aches is from Letrozole a drug I take for breast cancer - it's a known side effect. I have two primary cancers that I am battling - stage 4 metastatic breast cancer and limited small cell lung cancer. I think when we are fatigued by nothing other than our treatment (everything else ruled out) - our bodies are trying to heal and sleep is the best thing. If I were you I would talk to my oncologist about it to rule out anything else first. I at one point because of the constant fatigue had a blood transfusion, my blood work was low. But other things can cause fatigue like thyroid. I would most certainly tell my oncologist. Are you doing imfinzi immunotherapy or other drugs?
I had radiotherapy in 2023 and I can honestly say that it is just this past month that my energy levels have increased. I'm absolutely convinced this is because of the radiotherapy even though I've trawled the Internet to try and see if this is a side effect. I can only see that you are expected to feel tired for a matter of weeks after radiotherapy. I have stage 1 nsclc and had no treated except for the radiotherapy. My specialist told me that that the radiotherapy continues to work long after the treatment is finished so, to me, it makes sense that the chronic fatigue would be there as well. I have other health problems, incurable and untreatable, that cause fatigue but there has been no worsening or improvement in these conditions, they've stayed the same.
I feel a lot more aware of my body since learning I have cancer and I am less tired so I'm quite confident that I'm right about this. Give yourself plenty of rest and time, you've been through a lot and although you're stable now, it's never really over, is it?
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