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.
I've just finished up 6 cycles if R-epoch treatments and 4 cycles of high dose methotrexate. Doing fair just dealing with affects of the chemo and LYG.
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I've just finished up 6 cycles if R-epoch treatments and 4 cycles of high dose methotrexate. Doing fair just dealing with affects of the chemo and LYG.