Hi yes i went on it for two years had no side effects at all i was on the saron trial , diagnosed in November 2020 and been stable for a year now with being diagnosed with stage 4 lung cancer i feel lucky
Thank you for replying. This is all very new & sadly I also have a secondary brain cancer., which I have had treatment on too. They tell me it’s not curable. But you can never say never
I was similar to you, I had 2ndary brain tumour caused by primary lung tumour. Luckily my brain tumour was operable, and the tests showed I was 80% suitable for pembrolizumab so I went straight onto that. I ended up on pembrolizumab for 5 years, complete with side effects, because I had insurance. Eventually I got another tumour and that led to a lobectomy and I've been okay since.
The side effects with pembrolizumab are weird. For starters it's different for each of us, ranging from zero through to severe. There's no predicting how you'll react, so take it as it comes. Going 3 weekly rather than 6 weekly helps reduce them if they're bad. As for the side effects themselves, you need to remember that they are NOT a reaction to the drug itself but the immune system reacting to things it normally ignores. That's an important difference because you can experiment to find the triggers that set the immune system off to cause a specific side effect. It's the same thing with treatment: pembrolizumab doesn't get rid of the cancer, it's the immune system that does that because the presence of a tumour is a trigger.
Other than that, communicate with your oncologist - get the conversations flowing. Ask questions (and write down the answers there and then.) Exercise regularly to stimulate your immune system and eat enough protein to make those extra white blood cells.
I’m pleased to hear how you well you have done we with your recovery and that you brain tumour was operable. I'm seeing my consultant this week so will have a discussion with her over the decided frequency of my treatment. I’ve been trying to improve my protein intake and exercise. I was prior to my diagnosis fit & active but lost a lot of my muscle prior to diagnosis. If you don’t mind me asking were you on steroids. I’m currently am due to the stereotactic radiotherapy I’ve had for the brain. you never know they may come up with some amazing new treatments. Best wishes
Yes, I was on dexamethasone as soon as I was diagnosed with the brain tumour to reduce the swelling. It made the symptoms disappear, but I was weaned off it just before surgery. It was only after the operation that they could find out that pembrolizumab was viable for me.
New treatments get approval all the time, and more wait in the approval queue. I always thought of it as just surviving until the next best thing was available to me.
