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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
@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.
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@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?