Pembro - Should I be scared of side effects or not?

Hi Lucia, I am over twice your age, and on Pembro, I had dose #54 at the weekend, so not just on adjuvant treatment.

I remember the long list of possible side effects when I first started Pembro back in 2016, and wondering if it would work. The side effects weren’t something that I was concerned about then. Most people on Pembro who had spoken on here had continued to work full time, I was not and am still not working but in my retirement like to go for a walk everyday.

The day after treatment while out for a walk with my husband a wave of tiredness hit me and I found it really difficult to push myself on and back to the car. I don’t know if it was low blood sugar level for me (it’s always said it’s more likely to send it up rather than too low) or what but my answer was to do a circular route on the days just after treatment so that any walk back to the car was more manageable if it happened again. Tiredness has been my only side effect and I’ve found if I ignore it it takes longer to recover, and if I over anticipate it and couch hug that doesn’t work either, so just keep on keeping on and rest when my body tells me to. So not sick and not too tired. Someone else must have had one or two of the other side effects that must be long lasting and as they can pop up a while after treatment stops it’s something I haven’t forgotten about, and we all have blood tests for and they have plans and medicines for.

My only bit of advice is to be hydrated for having the cannula put in, drink more water than you normally would for the day before and the day of treatment. The year will pass sooner than you think it’s only 9 visits, and try to have something else to remember those 9 days for, which has been more challenging just lately. I hope that doesn’t sound to dismissal and preachy, it’s a weird time starting treatment but a few years ago there was no adjuvant treatment and watch and wait was weird for some to. 

Hi Lucia,

I think the essential truth is that the vast majority of patients on adjuvant pembro stay with it. Something in the region of 86%. Given your age and lack of co-morbidities, you should be fine. 
There is always the risk of hearing anecdotal scare stories, but the bottom line is that adverse events (side effects) with checkpoint inhibitor medication is way more random than chemo, for instance, and much less severe across the board.
For what it’s worth, tiredness and fatigue seems fairly universal (it was with me) 

I wish you well

Tim

Hi, I was same as you on reading the literature but now had 4 doses of Pembro and no major side effects at all. I take plenty of fluids to prevent the odd stomach/bowel pains, discovered that after a bad day, and only other effect is a mild itch all over my upper body which is mild enough that I dont treat it, just avoid the urge. I am a 65 year old relatively active male and have no sickness, no fatigue and can generally get on with my life with regular walks/cycling/gardening etc. In my experience Pembro is not scary and is eminently manageable. be safe and stay positive

Ron

Thank you all for your amazing answers, they have been super helpful in understanding Pembro and its side effects. Thank you and take care!

Start Pembro on Monday. Interesting that 86% of people see it through. I was thinking of quitting already but will now see how it goes.

Thanks.

 how are you getting on with pembro? 
how are you x 

I have my treatment consultation next week and just reading up on treatment options xx 

Hi.  It has now been 6 weeks and I am due my second treatment on Saturday. Not a single side effect. It has been brilliant. After the doctor went through 3 pages of possible side effects I have not had one. Go for it. 

Thank you so much for replying ! 
So every 6 weeks for 1 year ? 

so much to read up on but pembro seems to be sticking out to me the most. 

Yes. 400 mg every 6 weeks or 200mg every 3 weeks. You have to have blood tests before each treatment. You just sit in an armchair for an hour while the drip slowly delivers the drug. No problem.

Your putting my mind at ease so much! I am looking into the treatment options but I have no idea if I am braf positive or negative.