immunatherapy

No you are not crazy and it’s so easy to be down in these uncertain times.  If you are at all worried ring the help line and then explain your feelings and symptoms. I am on Nivolumab which is similar to Pembro and I used to get joint ache. I have been on the treatment for over 2 years now and I only have slight side effects like tiredness after the infusion and a pinprick itchy rash at times. Ringing will put your mind at ease.  

Hiya 

You are not crazy and yes please call someone. 

I’m not on immunotherapy, but on targeted treatment but I have had similar thoughts to you.  I recently had really sore gums - my mouth was agony and making me really miserable . I had my regular appointment to go through my medication and the nurse said I should have called them sooner rather than suffering - I just didn’t want to be a nuisance! It turns out type of gum/mouth problems this is a common side effect of my treatment. 

The advice they gave me is the one I am going to give to you, our care teams want us to tell them our symptoms and our worries no matter how small. They are there to support us and listen to us, so please ring! My gums were really sore but once I told them they prescribed something and my gums are no longer inflamed and sore. 

Hope you manage to speak to someone and feel better soon. Let us know how you get on 

x 

Hi Jan2021,

At the start of my immunotherapy (Pembrolizumab), I was terrified of the side effects. My oncologist assured me they were manageable and to always let them know how I am doing. So I use an online portal where I direct questions to my onc nurse. She then talks to my doctor and gets back to me within a day on the portal; one time it was more concerning so my nurse called me about a prescription they were calling in.  

Good luck! Cindy