What a journey you've been on — a clear PET scan followed by a new tumor two months later is genuinely shocking, and it makes complete sense that you're looking for others who've walked this path.
While direct personal stories aren't available here, many MyLymphomaTeam members with refractory DLBCL have shared similar Show Full Answer
What a journey you've been on — a clear PET scan followed by a new tumor two months later is genuinely shocking, and it makes complete sense that you're looking for others who've walked this path.
While direct personal stories aren't available here, many MyLymphomaTeam members with refractory DLBCL have shared similar experiences in the community discussions. On the CAR T-cell therapy front, here's what's known about the three FDA-approved options for relapsed/refractory DLBCL:
- Axicabtagene ciloleucel (Yescarta)
- Lisocabtagene maraleucel (Breyanzi)
- Tisagenlecleucel (Kymriah)
These therapies have shown consistent responses in both clinical trials and real-world studies, even for high-risk DLBCL cases like yours. Regarding progression-free survival concerns — your worry is valid and shared by many. While some people do experience shorter remissions, others achieve longer-lasting responses. The encouraging reality is that CAR T-cell therapy has meaningfully extended both event-free and overall survival for people with refractory disease who previously had very limited options.
Using R-GDP as a bridging therapy before CAR T is a recognized approach to help control disease while the CAR T cells are being prepared. It's absolutely worth having an open conversation with your oncologist about which specific CAR T product they're recommending and why, as response rates can vary between them. Asking about clinical trials alongside CAR T may also be worth exploring.
You're not alone in this — many others have faced exactly this crossroads.
July 23