Hello Mary-Mc30

I'm sorry to hear that you were diagnosed with chronic neutrophilic leukaemia (CNL) last year. I hope that despite the rarity of your diagnosis and the difficulties that you're having with Jakavi treatment, you feel well supported by the specialists involved in your care. 

I can't see that we have any other members who have been diagnosed with CNL, but we do have a number of members who have shared posts about the same treatment. If you use the search bar at the top of the page to look for the term "Jakavi" or "Ruxolitinib", you will be able to read through some of those posts. 

It's worth having a look at the Blood Cancer UK forum, as I can see from a quick search that there are two members there who have spoken about CNL, so hopefully you will be able to connect with them through their forum. 

If you'd like to chat with one of our team of nurses at any point, you're most welcome to give them a call. I know they will be happy to listen and offer any advice, information and support they can. They're available Monday to Friday, 9am to 5pm on 0808 800 4040. 

I do hope that you can connect with others living with this diagnosis Mary-Mc30. Keep posting here in the Cancer Chat forum if it helps to have a safe space to put things down in writing. We're here for you. 

Best wishes, 
Jenn
Cancer Chat moderator