Hi,
Over the past three months I’ve been diagnosed with CNL and wondered if there was anyone on the forum with the same diagnosis that wouldn’t mined sharing their experience/treatment as I’m struggling to find any recent information
I appreciate this is a rare blood cancer so the numbers globally are low & the likelihood of finding someone is remote but you never know.
Thank you.
Hi @AndyH and a big welcome to the forum.
I’m glad you have found the forum. It’s a really supportive place and even though your diagnosis is rare, we often experience those same feelings following diagnosis.
I hope others can share their experiences with you. In the meantime, I have shared some past links to conversations around CNL which may help.
I look forward to hearing more about you. Please take good care of yourself. There is always somebody here to listen so you can say how things really are for you 
I can’t seem to attach the links. If you type CNL in to the search bar the conversations threads will come up.
Hello - just randomly scrolling and came across your post. A family member was also diagnosed with CNL last September after a period of gout.
After lots of research we were able to be referred to UCLH who work in conjunction with our local cancer service.
We have been told that there is no treatment plan as the condition is so rare, so treatment is based on the reaction to the drug therapy. Currently on injections with blood transfusions as necessary.
We are getting on with life , although the main symptom is fatigue, so we manage that as we can.
One tip is to use fake tan on your face as without it he looks grey and unwell !
I hope that you are doing well
Hi and thanks for responding to my post.
Sorry to hear that your family member has been diagnosed with CNL and fully empathise with where they’re at, with the lack of information or others to converse with.
Everyone is different and I’m sure the treatment plan is tailored for each individual but I feel that I’m presently in a positive place and doing reasonable well, so hopefully that will give some solace.
I’m a 66 year old male and when initially diagnosed in June ‘25, I was placed on hydroxycarbamide to manage the neutrophil levels and it was explained that there was no ‘set’ treatment plan other than continuing with the drug or the possibility of a Stem Cell / Bone Marrow Transplant which I opted for and fortunately a suitable donor was found reasonably swiftly.
The Stem cell transplant was back in January ‘26 and I’m convalescing presently & doing okay but there are no guarantees with this treatment.
I can only but praise the NHS support I received from both Derriford & Exeter.
I hope the about is of some help.
I wish your family member, you and your family all the very best.
Brilliant , so pleased that you are doing well. Unfortunately a transplant wasn’t available to us due to age, but we are plodding on and are hopeful that treatment will continue to be effective