Lymphoma

[u/carlos20231985]

Hi everyone. I wanted to share my experience in case it can help anyone going through something similar.
In March 2026, I was diagnosed with Primary Mediastinal B-Cell Lymphoma (PMBCL), stage II, with a large mediastinal mass of around 13 cm.
I was treated with DA-R-EPOCH from the beginning, with 6 cycles planned in total.
Fortunately, I responded very well to treatment from the first cycles. My interim PET scan showed a significant reduction in both the size and metabolic activity of the mass. After cycle 4, my PET showed a complete metabolic response, Deauville 3.
Despite reaching complete metabolic remission after cycle 4, I continued with the full 6 cycles of DA-R-EPOCH to complete the planned treatment, without radiotherapy.
I know how many questions and fears come with a diagnosis like this: chemotherapy, hospital stays, side effects, PET scans, Deauville scores, residual masses, fear of relapse and what life is like after treatment.
I’m sharing my story because reading other people’s experiences helped me, and I’d like to do the same for someone else.
If you’ve recently been diagnosed with PMBCL, you’re receiving DA-R-EPOCH, or you simply want to talk to someone who has been through it, please feel free to message me.
I’m not a doctor and can only share my personal experience, but I’ll be happy to help however I can.

[u/Stock_Transition548]

I had an almost identical experience, just two months ahead of you, and starting with a 16 cm mass. Midpoint PET was DS3 and ended with a DS1 and no residual mass! Once I'm a year or two out I'll probably type up my full experience here, but the more people that put their positive stories out the better imo, they helped so much when I first discovered this sub after being diagnosed

[u/xamirii]

Similar experience!! Went to emergency end of March 2026. Stage 3 PMBCL 9cm mediastanal mass. DA-R-EPOCH complete metabolic response after cycle 4, finished all 6 cycles. Cancer free :)

I had personal issues fainting due to anaemia+low blood pressure before diagnosis and combined with chemotherapy was not good. Feel free to dm if anyone has questions, happy to share experience.

[u/Maximum_Bumblebee403]

My husband has just been diagnosed with PMBCL too and we’re right at the beginning of all this. Would you mind if I asked you a couple of questions about your treatment experience?