Pembrolizumab

Hi , I’m sorry to hear your having trouble with fatigue. I’m changing to 6 weekly Pembro from 3 weekly tomorrow and that will be #44 of Pembro for me. Each time I feel at half pace for a few days, so I feel labelling my fatigue doesn’t sit right right for me. I’m also not working so I have had the luxury of not having to work through things. I did find though that as I like to keep active I only found I could do the 30 minute warm up at my walking netball instead of the full hour. It also made me very wary of walking too far so instead of a long walk, I changed my route for a circular one during those days. I found if I tried to ignore the tiredness and tried to plot on regardless it took me longer to feel normal again. I would give myself a few days slack with ironing etc and catch up in tHe good weeks and I’d make my husband do the cooking for 4 days, he likes looking after me

I don’t know if you have read the Macmillan section below

https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/tiredness

It might have some coping ideas for for you and it mentions talking to your GP, this might be good for a fit note aswell, but I have no experience of it. The dr might be able to suggest a reasonable adjustment for your work, during the days that you have difficulty. I don’t know what your job is but he could tailor advice to it. You are covered by the disability act. You might want some expert advice from the Macmillan advice line or the ask an expert section. Link below for you in case it helps.

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask-a-work-support-adviser/discussions

Did you find going from 3 weekly to 6 weekly any worse ? 

Final thought for now has been working and on 6 weekly Pembro and might have something more useful than me to add, and anyothers who can share their story I bet would be useful for you.

Please let me know how you get on.

Hi

I’m on 6-weekly Pembro too, I’ve just been this morning for Cycle 8. I haven’t really had any problems to be honest, so I’m not sure what I’d advise. I was quite tired the evening after my treatment in December, but I’d had a full day of appointments and was generally knackered from work, so it’s hard to know if my treatment had anything to do with it. I was quite interested to see how I’d be this time, but just had 2 sleepless nights so the same problem really!

 Work have been fantastic about me going for treatment and numerous appointments, but I do find it quite stressful trying to juggle my workload around everything - especially when I’ve struggled to book meetings in, then get told about clinic appointments at the last minute and have to rebook everything. How have you been doing so far on the work front?

Sorry I’ve not been much use!

x

Thank you KTatHome, for your advice. I have only been on 6 weekly cycles. I managed fairly well the first time, although I did notice sudden feelings of exhaustion from time to time. I was quite shocked about my reaction yesterday. I will follow the links you have provided and hopefully will be able to manage things better.

Hi Katybb,

Thank you for replying to me. I'm pleased to hear that you have managed so well so far. 

My employer has been very understanding as well which is great. Yesterday was the only day I have had to take off so far and I will probably work from home the day after treatment next time or take as sick leave if necessary.

I've been told by the oncology doctors to try to keep doing the things I do to keep fit which make me very happy. So I am trying to keep things as normal as possible.

You have been a help - it's good just to have a conversation about this.