Hi Lynnie

There are lots of people on this forum who have related their experience of Pembro, mostly good things. A forum search should bring them up.

This medicine can be life changing for the better, do not worry about the long list of side effects, you most likely will get very few.

I am on a similar immunotherapy drug Cemiplimab, I get fatigue which I can manage with resting once or twice during the day and early to bed 10pm, and an itchy rash, which is managed well with creams and lotions. The upside is after just 4 months multiple 5mm tumors are now just pinhead size or vanished altogether. I feel better knowing the cancer is being beaten back and I'm making the most of life, having just had a holiday between treatments and off for a long awaited visit to see my family.

Id say to you give it a try. You can always discontinue it or even have a short break if you do not tolerate it well. You team will monitor you closely with regular blood tests and scans when required. You will be given a direct 24 hour contact number should you have any concerns. Obviously it is your choice but with cancer always take the belt and braces approach to minimise any recurrence.

Ed

Hi Lynnie

I had Pembro alongside my chemo for breast cancer in 2023/24.  I did have one severe allergic reaction which resulted in a rash and a short hospital stay, but it was treated quickly and, as Farmer_Ed says, you will have access to a rapid response team should you have any symptoms of side effects or high temperature. 

Unfortunately I have also had a delayed reaction to the Pembro (my last treatment was November 2024) where my kidney function reduced to just 19%.  However, I was not aware of the symptoms and delayed seeing a healthcare professional for about 4 weeks, putting the symptoms of dry mouth, loss of appetite, severe acid reflux down to winter bugs/gastritis etc.  Once I saw my GP in January, he ordered blood tests. I was taken into hospital straight away once the results came through and given IV fluids and am now on a course of steroids.  Two months later my kidney function is back up to 48%.  However, on the plus side, the Pembro helped to completely destroy all signs of cancer, so I would say if you decide to proceed with it, just monitor yourself very, very closely and be aware of any subtle changes.  You can always call the professional team if you have any concerns and they will advise whether a trip to hospital is necessary for triage.  I only got as bad as I did because I ignored the symptoms, but I have learned my lesson!  I'm hoping to reduce the steroids soon as I absolutely hate them! 

Good luck with whatever you decide to do.  But remember it is your decision and, also as Farmer_Ed says, if you really can't tolerate it, your oncologist will either stop or adjust the dose to suit you. 

All the best. 

Carol

Hi Ed,  I was just wondering what creams and lotions you are using for your rash.  I have a chemo rash which is driving me crazy.  I have tried Moogoo, Aveeno, had steroid creams, nothing seems to work.  I have to have my chemo dose lowered I think because of this rash.  I am hoping you can give me advice as to what you use.  Many thanks

Lee x

High Lonnie,  I had my first dose of Pembro, that’s how the nurses etc. refer to it, last New Year’s Eve. At least it’s easy to remember.  Doctors told me, as they probably did you too, of all the horrible possible side effects, including life threatening, that can happen. Then they said it’s up to me to decide, won’t give advice.  How do you make a decision like that.?. I found it very difficult.  It was talking to people on Cancerchat that reassured me .sSide effects for so far have been fairly mild. I do get very tired easily,but being retired I can have a nap in the afternoon, and easily confused over silly things. Also I forget to do things so I leave myself notes all the time.  All in all I am coping with it and believe I made the right decision to go ahead.  Best of luck. Tony

HI Lee

I use mometasone steroid cream,  e45 anti itch cream or balneum which can be available on subscrition. Also use e45 or oilatum bath oil instead of soap which can dry skin out leaving it itchy. You can use oil in shower by putting some on a wash cloth. Be careful as it makes shower base slippery.

Hope this is of help

Ed

Hi Ed,  thank you for the information, I had mometasone cream before for eczema so I might ask doctor for repeat prescription for this.  I will also get some E45 anti itch cream.  I am on chemo tablets indefinitely as I have secondary cancer but just cant stand this itch.  Thanks .

Lee x