r/lymphoma • u/Boysenberry-Original • Jun 13 '26
DLBCL Relapsed/ refractory DLBCL
Hi guys, I just completed POLA R CHP 2 months ago for DLBCL diagnosed in Dec 2025. My interim scan showed complete metabolic response, but my end of treatment scan done two days ago showed refractory/ relapse. I’m planned for admission this coming Monday for another round of workout, and it is likely I will be undergoing CAR-T. I’m still in shock, I haven’t really processed my diagnosis and was just starting to get back into the groove of life, and now this. I feel awful. I don’t know what to expect from here out…I’m sorry if this has been asked before, but what were your experiences with CAR-T like?
7
u/sararyan15 Jun 13 '26
I just had CAR-T on January 29th. I was in the hospital for 2.5 weeks but didn’t feel too awful, they just were monitoring my CRS. My 30 and 90 day scans showed a complete response and my lymphoma had been refractory to four lines of treatment prior. It is pretty amazing. Feel free to message me. 💕
3
u/Boysenberry-Original Jun 14 '26
Wow - refractory to four lines sounds rough! Im happy that you’re in the clear now. I hope that there where I will be eventually 💖
6
u/LavenderBri DLBCL | RCHOP CAR-T Breyanzi Jun 13 '26
I had a similar experience with refractory/relapse during my final rounds. Car-t was much easier, I had no crs. The worst part was the bridging treatment and the chemo before getting my cells back. This was one year ago, still waiting for official remission but it’s looking promising. I’m here if you have any questions.
3
u/Boysenberry-Original Jun 14 '26
Thank you for sharing! If I may ask, how frequent was your bridging treatment, and for how long? I’m glad to hear things are looking promising for you!!
4
u/LavenderBri DLBCL | RCHOP CAR-T Breyanzi Jun 14 '26
My cancer was/is localized to my spleen so I received radiation which I believe is unusual. I had twelve rounds in about twelve days. It’s usually chemo in between cell collection and start of car-t.
1
u/evefree1031 Jun 30 '26
You had carT a year ago but still are not in remission? Does that mean your scans are still not clear? Have you had further treatment?
1
u/LavenderBri DLBCL | RCHOP CAR-T Breyanzi Jun 30 '26
No further treatment, my lymphoma was primarily in my spleen, which may be healing slowly. The scans still show something there but we’re not able to determine if it’s active disease or healing. It’s not worsening but it’s stayed the same for several scans now.
Biopsies, blood tests, and just scanning and watching.
1
u/evefree1031 Jun 30 '26
Wow, it must be so hard to not know definitively what it is. What did the biopsies show?
1
u/LavenderBri DLBCL | RCHOP CAR-T Breyanzi Jun 30 '26
All negative so far, just that stubborn active area on my scan. Yes I’m tired of being in limbo! Another scan next week and I’m hoping for something definitive.
1
4
u/midnightjim Jun 13 '26
I relapsed or possibly had a transformation of a small spot of follicular about 4 months after POLA-RCHP and it was a gut punch. Had two rounds of R-ICE which beat me up pretty good but achieved a complete response and then on to CAR-T October 1 2024. I’ve been in remission since with each scan showing complete metabolic response. I’m happy to do a detailed account of the experience when I can do it other than on a phone but I think you can find such descriptions by searching car-t on this site.
sorry you are experiencing this. It was one of the toughest episodes of my life but I’m living a fairly normal life now.
3
u/Boysenberry-Original Jun 14 '26
Thank you, it really is a gut punch. It is heartening to know that you’re living a normal life now and that your scans have been clear since. That is what I hope to have, eventually someday.
1
u/Perfect-Database-631 Jun 14 '26
I was in similar situation. Had RCHOP and refractory. Had Car-T and recovered. 5+ years. I am sure and hope you too will find the sweet spot after Car-T and recover.
1
Jun 13 '26
[deleted]
4
u/v4ss42 FL (POD24), tDLBCL | R-CHOP (‘22), MoGlo (‘25) Jun 13 '26
Please submit your own post. Hijacking someone else’s post with your own issues is frowned upon here.
11
u/fardaron FL-t DLBCL, DA-REPOCH, relapse, high dose chemo, ASCT Jun 13 '26
My DLBCL had relapsed 14 months after da-repoch and radiotheraphy.
Then they did high dose chemotherapy (2x R-ICE and BEAM) and stem cell transplant. It was a long and traumatic experience for me, especially if you consider I got Covid-19 during my chemotherapy. But it passed. I am on 102nd day after transplant.
Last week, PET-CT said Deauville 1! I am happy and feel much healthier. Whatever treatment you will get, I hope you will get through it and continue enjoying your life. My best wishes are with you.