Pembrolizumab steriods

I have had a gamut of pembrolizumab induced issues, and steroids in one form or another seem to be the only medical answer to a lot of them. My first issue was a rash. It was low grade and was managed with topical steroid cream, emollient and antihistamine. I was able to remain on pembro at that point. Later on I had a much more serious event involving kidneys and thyroid, with effects on lungs, bowels and nerves revealing themselves at a later point. I had no option but to accept high does steroids (refusing them would probably have meant progressing to dialysis, or worse) but I am still on steroids (admittedly now at a lower dose) 4 months later, and still managing the consequences to my health. I wasn’t able to continue with Pembrolizumab once that lot happened. 

Oh dear sorry to hear you’ve had all these issues following the Pembro. With hindsight after the rash would you have stopped it? I’m just wondering if it’s like a warning sign.. so hard to know with it having no side effects one minute and then going haywire the next.. all my blood work is completely fine but I have to have a course of steriods now for the rash

No, I wouldn’t have stopped it. It was working wonders on the cancer. It’s just my immune system reacted too well to it! I have a blog of it all if you can face it. community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer

Hi LJroux - How are you doing now? I’ve developed a nasty rash 8 days after Pembro after having pacllitaxol.  I’m on intravenous steroids for 4 days then 56 days on tablets - reducing dose.  
What did you decide to do? I’m also thinking that my consultant is questioning whether I could continue with Pembro/ immunotherapy. 

Hiya, welcome to the up all night club.

So I skipped a dose of Pembro, while I treated the rash with a 3 week course of steroids reducing dose. it wa a considered 40% of me but it was already reducing and it was pinprick not itchy or anything. The rash cleared after about 2 days of the steroids so for that reason my consultant felt it was ok to have another dose of Pembro because my immune system responded so quickly. 
now 2 days after I stopped the steroids it looked like it was coming back- so I used topical steroids they gave me for a couple of days and it kept it away and so far.. 3 weeks since my last Pembro, I’ve been ok. I do have a bit of eczema on my hand and I have some skin issues on my face who knows if that is Pembro…. 

I asked the specialist nurses if, for my MH they could request more often the extended blood work to make me feel more confident such as how all my organs are behaving. 

I’ve also required a blood transfusion but the consultant said that was from Chemo. So yea I get it I’m still nervous.. but I had scans this week and the whole regime is really working at my halfway point so that’s keeping me positive. 

half the battle is the mindset right? 

Sounds like your team are going in hard on the rash, I was told that was really normal to hit any immune response really hard so that it doesn’t escalate so altho I hated it, I had to trust them they’ve seen all this way more than we have and they are on our side. I was just really honest about my concerns and the consultant made me feel he had it under control. 

hope that helps and wishing you well xxx

LJRoux - haha up all night club - nice to know I’m not the only one  hopefully tonight the itching won’t wake me but maybe the steroids will  ….

That’s good to know you had another go on Pembro and it’s working out.  The nurses are telling me my rash is the worst they’ve seen.  It’s still a bit itchy in places but so much better.  I’m scared to take Pembro again but also scared not to.  I can’t win either way - just got to trust the team. Next week I’ll know more. 
Brill your scans are looking good - that’s the main thing.  

For some reason there is hardly any rash on my face.  I’m wondering if years of anti wrinkle factor 50 suncream might have saved my face

Sounds like you’re doing really well which is so good to hear,  all the best to you too

(thanks for the quick reply )  xx