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Looking for anyone with a CNL diagnosis
Blood Cancers & Disorders | Last Active: Mar 18 6:18am | Replies (8)Comment receiving replies
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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@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.