Looking for anyone with a CNL diagnosis

Hi @lauraleenc -

I assume you are referring to primary central nervous system lymphoma. If not, please disregard the information below. I believe the treatment for primary CNS lymphoma is different from my diagnosis of secondary CNS lymphoma so I am referencing @mepowers who was treated at Mayo for primary CNS lymphoma. Hopefully hearing about her successful treatment and long term remission will provide some encouragement.

Wishing you and your father the best possible outcome in his treatment.

My diagnosis and treatment for secondary CNS lymphoma is detailed below in case this is helpful.

Diagnosis and Treatment for Secondary CNS Lymphoma:
I was diagnosed with Diffuse Large B-cell Lymphoma (DLBCL) in November 2023. I had multiple tumors in my body (stomach, lungs, brain). Because of the brain tumors, mine was also classified as secondary CNS lymphoma. Below are details on my treatments and remission.

If you have specific questions on these chemotherapy treatments from a patient perspective, please feel free to reach out and I can share my experiences.

My Treatment:
I received 4 rounds of R-Chop therapy and 4 Matrix treatments at Mayo Clinic to target the multiple tumors. The final phase of my treatment was to include an autologous bone marrow transplant but I was unable to complete the transplant after chemotherapy due to insufficient stem cells.

My Current Remission:
I had good results with the treatments and am now in month 17 of post treatment remission. I get scans (brain MRI and PET) and labs every 3 months to confirm continued remission.

Hi Laura, While waiting for members with Chronic Neutrophilic Leukemia to reply I just want to welcome you to Mayo Connect. Looking through a quick search I wasn’t able to find anyone specifically mentioning CNL but this is a global site and people trickle in from all over, so it may take a little time.

In the meantime, so many of us in the Blood Cancer & Conditions group have had serious and complicated experiences with leukemia and lymphomas. So while we may not have the exact diagnosis we know the range of emotions as patients as well as our loved ones. We’re a very supportive group so please don’t hesitate to ask questions. It can feel pretty lonely without someone to talk to about a diagnosis.

From what I understand CNL, which involves the overproduction of neutrophils is rare and can be a bit challenging to diagnosis. If you’re interested in reading informational articles, I’m posting 3 links which I felt had merit and provide a general overall synopsis of CNL.

From Healthline.com
https://www.healthline.com/health/leukemia/chronic-neutrophilic-leukemia
From Sciencedirect.com:
https://www.sciencedirect.com/topics/medicine-and-dentistry/chronic-neutrophilic-leukemia
Chronic neutrophilic leukemia from Medicover:
https://www.medicoverhospitals.in/diseases/chronic-neutrophilic-leukemia/
I know how a diagnosis like this can really feel like the rug has been pulled out from under a person. How is your dad doing through all of this? Is he receiving treatment?

@lauraleenc, just checking in. How is your dad doing? What treatment plan has been recommended for him? How are YOU doing?

@j0318 Hi. I, too, have been diagnosed with stage 4 DLBCL with secondary CNS lymphoma at diagnosis. Interesting, as my onset was also in Nov 2023, but was misdiagnosed (not at Mayo) as encephalitis. Came to Mayo AZ and was properly diagnosed and initiated treatment in March 2024. I had MR-CHOP for treatment. I’m currently in remission, with MRIs every 3months. I have been looking for someone else who may be going through the same thing, without much luck— as it is pretty rare.

@juliej14 Welcome to Connect. With being a bit of a rare bird with your diagnosis it can feel pretty lonely out there. So I’m glad that you were able to see the post by @j0318. She’s always so upbeat, encouraging and helpful.

I just read your bio and my goodness, you have endured an incredible medical adventure, to say the least. It’s amazing what the body can go through and recover from…and that doesn’t take into account the intense mental fortitude and spirit of endurance required to push through! You’re amazing, Julie, along with your team at Mayo-AZ. Mayo Clinic has been the face of hope for so many of us, including myself. So I’m very happy for you to be in remission and making great strides in your recovery.

Wishing you continued good health! It can be challenging to move past the PTSD from medical trauma like this. What have been your greatest recovery challenges?