@jamie72 - How was your visit at NIH?

I was diagnosed with stage 4 DLBCL in June 2019, CNS involvement, Lungs and adrenals- All of them bilateral. I actually moved to Rochester Mayo to have my treatment, they put me on R-Chop for 6 cycles and Methotrexate for six cycles - total of about 5 months. I had a rough time during my third cycle but eventually got through it was what they call a complete response.

I never heard for LYG at that time but apparently it's hard to diagnose and many people (from what I have been told) start out with some type of lymphoma diagnosis.

Since I needed to be monitored, once I moved back home, I found a doctor at Mass General that specialized in DLBCL. After consulting with Mayo and given the history, it was concluded that I had LYG.

My choice was roll the dice and hope the cancer does not return or go through a BMT. I decided not to roll the dice and had my BMT during the start of covid 🙁

Very rough and took me two years to recover. As of this date, I am cancer free and I owe my life to Mayo and Mass general team. I was googling and randomly found this thread, it is amazing how hard it is to find anyone with LYG.

I obviously were stage 3 like yourself, just never diagnosed with it until later.

How is your journey going?