Hi all
I was diagnosed with NSCLC stage 3 in September 2022 & it’s spread to the lymph nodes in my chest but thankfully not anywhere else. I’ve been told it’s not operable or curable. My marker were high so my treatment plan is Pembrolizumab (Keytruda) for 2 years & this started in November.
I also have Psoriatic arthritis (controlled with methotrexate) and fibromyalgia, which means I’ve lived with fatigue for quite a few years. After my first 4 treatments I would be exhausted for 3 days but shortly after would be back on track with my normality for the short time before the cycle started again. Treatment 5 on 10th January was totally different & I have been beyond fatigued since. I had some itching but spending a fortune on Aveeno has helped that but I just feel weak & lacking in any sort of energy. My eyes constantly feel heavy, not like I have to sleep more to do with the effort of keeping them open!
I spoke to the lung cancer nurse, who has written it all down ready for me to discuss with the consultant at my appointment tomo. She’s mentioned cutting down my working hours but I’m fully supported at work & don’t feel ready to make that big step yet. She did say it’s not normal to feel so fatigued with immunotherapy but everyone is different & my other medical conditions could be a factor. She’s worried me slightly as said the consultant will speak to me fully to make sure nothing else is happening, so of course my brain is now in overdrive especially as I’ve had backache for the last couple of days which is making me worry it’s spreading.
I had a ct scan after the second treatment & it showed an improvement, so do you think im worrying for nothing?
My mood is low, in fact the best way I can describe it is I feel “grey”. Everything is an effort, I have fantastic friends but I’m struggling to find the energy to see them & would rather sit in my armchair & vegetate. Luckily for me my friends have not given up on me & continue to be supportive & caring but I do worry I’m pushing them away.
Has anyone else had this extreme fatigue after immunotherapy? This journey is a huge scary one, so maybe I’m not coping as well as I thought I was?
Any words of wisdom would be much appreciated.
Mxx
Morning M , I’m so sorry you are feeling low …I’m feeling very much the same at the moment but only started my immunotherapy last week so don’t know yet if it is that or not …. But I know what you mean about feeling grey …. I’ve asked to be referred to the oncology psychologist and have my first appmt next week …. I think it’s completely natural to hit low spots on the cancer trail now and then .. treatments tough , having cancer it tough , why would we not feel sad and low now and then …. But maybe you need a bit more support right now ? Always avail for a chat love 
