Hi

Hi , I have been on the immunotherapy Pembrolizumab for what seems like for ever (I’ve had 47 if you look at my profile you will see why , I must so a shorter version). I am assuming that you are on immunotherapy as an adjuvant treatment? I’m not sure if your on the same one as me, I had a quick look if it said anything more in your profile, but nothing was there when I had a look. I’m wondering how tired you have felt this first time? I have always felt tired after each dose, just for a few days, I would feel at half pace and need to nap, for upto 4/5 days. Sometimes it would impact the afternoon of treatment, sometimes not til the next day. We are all different, I wouldn’t describe mine as fatigue although one time early on I went for a long walk and suddenly hit a wall and nearly couldn’t make it back to the car. Knowing that I pace myself for those first few days, I don’t work so I have the luxury of being able to do that. I’d still do a walk but a circular one so that I don’t have to worry about feeling stranded, and listening to my body to do less, but to still do something. My husband always cooks for two evenings after my treatment. 

How have things been so far for you? 

Hi KTatHome,

Thank you for your reply; it’s really helpful. I am new to online community so haven’t completed a profile yet; not sure about navigating site etc. I’ve been quite tired since my first adjuvant Pembrolizumab infusion last Thursday, needing a nap most days. I feel quite weary, quite an effort to walk upstairs. Over the past four weeks, I had built up to doing more round the house and enjoying yoga, Pilates and walks  again but now feel quite drained; although I’m still trying.

Hi Mstee, Welcome to the community! I have been using the community for years but it feels like new at the moment due to some recent alterations and them still working through some bugs. 

Thats good that you were building up to doing more and I bet you feel back to square one again. That’s how I used to feel every 3 weeks, I now have treatment every 6 weeks which I imagine you are having, it’s a lot better got me, more ‘me’ weeks then a slow week. I used to find if I pushed myself it took longer to recover so I would say be kind to yourself. One oncologist said that I could try to take paracetamol to see if that shortened the tired times, the thinking behind that was the tiredness is like when you have flu. I did that once for me it didn’t seem to make any difference. 

There are others who have experience as well who I hope will help aswell with their experience.I hope you settle into a workable routine for yourself, Macmillan have some work support advisers on their telephone line and the ask an expert section if you need any support knowing your rights. 

The profile, well just think about it in your own time, if you click on your user name it take you to it and the edit button is on the right.

Best wishes

Thanks KTatHome for your good advice. Sounds likePembrolizumab suits you and is bringing good results. Hopefully in 3 months the latest node will have shrunk. I’m still taking paracetamol for pain although I have been trying to scale it back so maybe now is not the time given how tired I am.

I’ve made a start on my profile now

Virtual hug to you