Pembrolizumab

Does anyone have any experience of Pembrolizumab immunotherapy treatment? I’ve been told my cancer has gone but because there was 20% Clear cells in the tumour I meet the criteria for treatment but there haven’t been any studies on the type of tumour I’ve had, I’m an anomaly apparently, are the side effects as scary as they seem? If I didn’t have the 20% I wouldn’t have been offered any preventative treatment just monitor over the next few years.

So confused, the doctor said there’s no right or wrong answer & to just toss a coin to decide if I want to go ahead.

Parents
  • 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

Reply
  • 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

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