Pembrolizumab

Hi there. I’ve recently finished my course of Pembro. I had several side effects but they were not bad enough to stop the treatment (oral thrush, mucositis, knackered thyroid, joint pain, carpal tunnel syndrome, fungal foot infection). It was the psychological side effects I struggled most with - the constant hospital visits, stress, worry about the future etc. I thought I would feel better when the treatment finished but I’m still struggling with a few medical issues. I don’t regret having the treatment though. The infusions were straightforward - oncologist appointment, blood tests,  infusion two days later. I’d had 59 years of good health then 18 months of relentless appointments and treatment - I found that very hard to cope with. 

Best of luck with your own treatment. My one piece of advice is that if you have any symptoms that you’ve never had before they are probably down to the treatment - make sure to tell your oncologist that. Mine was a little reluctant to accept that all my joint pain was a side effect but it was.  A short course of steroids demonstrated that. 

if you have any questions about Pembro I’d be happy to try to answer them from my experience. 

Hello I’m 64 I’ve had my 3rd Pembro treatment for stage 3d. I’ve had a few symptoms, non bad enough to report thankfully. I do find it interesting noting them!! Mostly digestive linked, eyebrows turning white!! I wish you good luck and hope you sail through the treatment! 

Thanks, both, for this great feedback. It manages to be reassuring despite the subject matter. I feel encouraged, as I’m sure others will be. 

I am 72 yrs and have received Pembro for two years and have got on very well with it, it even stopped the dreadful Migraines I have suffered for years.! I hope you have now started treatment and will do well with it, I have just updated my profile if you want to find out more about my journey. 

I had 4/9 treatments of Pembro every 6 weeks but because this was too severe on my body it was 1/2 treatment every 3 weeks for part of it then stopped for a break. My side affects were enlarged heart, inflamed bowel, pancreas burnt out, joint pain, feeling sick. My oncologist decided to stop treatment after having the 4 of the 9 due as my body couldn’t take anymore. But after 10 months of my treatment finishing it looks like my melanoma is back and spread. But I think I’m just unlucky by the looks of things, I am 54.

i hope all goes well with your treatment, please feel free to ask me anything if I could help in anyway.

That’s awful Izzy. I’m about to have my 5 th  try few side effects apart from my thyroid being knackered, small price to pay. I’m stage 3c what stage are you if it’s ok to ask. 

Daisy and Izzy, thanks for letting me know about your experiences. It really does seem a lottery and quite daunting, but I start on Sunday and will be hoping for the best! 
I’m really sorry to hear about your troubles, Izzy; hope things get better….

Hi, I was stage 3C but waiting to see if it’s now maybe stage 4 unfortunately. Waiting for scan results to get this confirmed. Then to see what will happen next. Thank you hope all goes well with your 5th treatment 

Thank you Euphoria, I’m just waiting for scan results to see what happens next. Hope all goes well on Sunday