Immune therapy

Hi Jane, sounds like you have had a lot to deal with in a rather short time. I hope the kind and informative input from other site-users here will help you as it has me. I have no personal experience but I have read about others getting immune therapy, particularly in USA  and some really encouraging stats about slowing progression. I had heard recently that it was being offered in UK. Sending you very best wishes Hx 

I don't have any personal knowledge of this treaatment, but wish you the very best with it. Hopefully, some members may know more about it? Otherwise Google may tell you all you need.

Hi Jane, I am currently undergoing Immunotherapy in Scotland. I am taking Avelumab by iV every 2 weeks. If my body can take it, the treatment is for 2 years. The treatment process involves canulation (ouch), then 2 paracetamol, then a short dose of anti-histamine via IV, a quick flush, then the immunotherapy over 2 hours, then a 10 minute flush. My first treatment, my body reacted badly, aching back first, then constantly crazy shaking & feeling cold until they got me under control. Since then, I have my immunotherapy over 2 hours - running at half speed which has sorted out that issue. The nurses say that the younger you are, the more likely a reaction as your immune system is stronger. (I'm 63). From cycle 4, I started getting awful itching on my skin, mostly my arms & waist. This is very slowly improving with more anti-histamines & hydrocortisone cream. Last Thusday after cycle 6, I started getting diarrhea in the mornings. It's a known side effect. I get a phone call from the nurses just before each treatment, I will let them know about this.

Hi Coojee, so helpful  that you are able to provide such clear information about Avelumab. I was pleased to catch up with where you are in your treatment. Sounds like you are getting regular support from your specialist nurses, I think it feels far less overwhelming when you can directly feedback to a medic who knows you, about side effects. Also discuss how doses can be managed to match your specific needs. I hope you are getting same beautiful weather up in Scotland and feel well enough to get outside enjoy your spectacular countryside and listen to the birds. Sending love H x

Hello Coojee, Thankyou for taking the time to share your experience- makes it a bit clearer. Good luck with your treatment x