I am due to start immunotherapy treatment with Keytruda plus a drug called Lenvatinib. Has anyone had this treatment? Potential side effects look quite scary so wondered how people fared with this?
I have no experience of immunotherapy but wanted you to know you are not alone and hopefully someone on the site will have experience of it. Have you spoken to your medical team about the likelihood of the side effects? I remember reading what Jane2511 has written about what she was told about the side effects of chemotherapy, stating that they lost everything but most people don't get all of these side effects. X
Thank you. Oncologist said there was no way to predict side effects- just had to try it and see - as everyone is different. Feeling very alone at moment so thank you for responding x
I started an immunotherapy drug called Dostarlimab in late January and like you was terrified as told about possible scary side effects. But I've just had cycle 5, and so far just feeling cold is the worse it's been sometimes after my evening meal, so I just layer up, and check temp is ok which it always is.
Just remember you will be closely supported with a 24 hour phone number, you will be reviewed every cycle and bloods taken. Good luck.
Hi. I have just been taken off this drugs regime because the lenvatinib gave me too much protein in my urine meaning I was at risk of my kidneys being damaged. I started the treatment in July 2022 and was supposed to be on it for two years. Before the kidney thing the most prevalent side effect was diarrhea, not really wanting to eat very much sometimes and nausea out of the blue. They will give you something to stop any side effects. It was discontinued in January and does work as most of the time I felt good. There has already been a progression in my lymph nodes and lungs so they want to put me back on Carboplatin. I'd rather be on the immunotherapy! Good luck and I hope you don't have too many side effects.
Thank you that’s helpful to know. For me the combination of the two things with their myriad of side effects is what makes it most scary. My circulation has been a bit off since chemo so I sympathise- often wear walking socks to bed! Thanks again
You did well to continue til January! Sorry to hear about further spread. Are you trying anything else other than oncologist, such as looking at diet, acupuncture and so on? I am consulting a functional medicine practitioner but have only had one meeting so a way to go. She recommended a book by Julia Bradbury which I am reading at the moment. I feel I am at the slightly desperate stage at the moment! Thanks for replying x
Hi. Not really looked at my diet as I try to eat healthily although I am partial to wine! My oncologist said I did well. I'm the patient that had tolerated the longest as many people can't cope with the side effects. I'll certainly look at the book. I am aware that you can take supplements such as mushroom/apricot kernels and teas to boost your immune system but not tried any yet. It certainly can't do any harm to try.
