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Looking for anyone with a CNL diagnosis
My father was recently diagnosed with CNL. Looking for anyone out there with experience in this area to help with a few questions, guidance and advice. With this being on the more rare side of diagnosis, I feel a bit disconnected and would like to connect with others that are either going through this journey or walking alongside someone who is.
Thanks!
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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.
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1 ReactionHi 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?
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