Diagnosed with MPN ET

Hi @Sandra, I hope you don’t mind me jumping in to check in. It sounds as though it’s an understandably worrying and confusing time for you. I just wanted to echo what Erica has said here and say you’re very welcome to reach out to our support line if you’d like a bit of support or just a space to talk things through with someone (0808 2080 888).

It can indeed feel so very difficult to make decisions around treatment. May I ask, Sandra, how you’d feel about getting in touch with your Clinical Nurse Specialist prior to the next call to talk through your concerns? It’s so important to have what you need to make an informed decision, and I believe this includes the chance to talk about your worries and questions.

I understand that you’ve been reading and researching so I do apologise if you’ve seen these webpages already, but I thought I’d paste them here just in case they’re useful-
Acalabrutinib (Calquence®) | Macmillan Cancer Support
Venetoclax (Venclyxto®) | Macmillan Cancer Support
Obinutuzumab (Gazyvaro®) | Macmillan Cancer Support

Please do feel free to give us a call, Sandra, if you’d find it helpful to talk things over.

Best wishes,


Hiya I have only recently been diagnosed last February and I will be honest with you this site is very important to me because it’s a great wealth of information from people who are in the same situation as us.
I have experienced the biopsy that you have to mentioned, it’s over quickly and you should share your thoughts and feelings here my friend.

Take care pal.