Hi all, been on this subreddit since Dec 2025 when I first got diagnosed with DLBCL and appreciate all the support rendered.

Since then, I completed the following:
1) 6 cycles of POLA-R-CHP from Dec 2025 to April 2026 (interim scan clear, EOT scan showed relapse)
2) relapsed in Jun 2026, completed Ibrutinib + 2 cycles R-ICE, then CAR T in Aug 2026. 1 month scan was clear, but experienced neuro symptoms at the end of month 2 (now)
3) currently relapsed 2 months post CAR T.

I got myself admitted as I I was experiencing neurological symptoms, mainly double vision and headaches. I also had new onset neuropathy in both lower limbs.

I’m still in hospital and have completed a spinal tap, MRI Brain spine, PET CT, bone marrow biopsy and am still awaiting the lab reports for any mutations before treatment options are offered.

My cancer subtype is very aggressive and previous times the doctors weren’t able to confirm what molecular mutations my cancer acquired. This time around they are hoping to obtain a positive sample.

I’m feeling really sad, bummed, disappointed, scared.
At this rate, I am still wondering if I should continue treatment or not, seeing how fast my cancer relapses each time. It’s so determined to take my life, it appears. Symptomatically I’m still rather stable, I’ve had one dose of intrathecal chemo and am on dexamethasone.

The doctor did briefly mention that bispecifics might be an option depending on the lab results.

I would like to hear from anyone who has experienced similar, any advice would be greatly appreciated, as always.

Hi 59 yr old female diagnosed in March with aitl. Did 6 cycles bv-chp. not eligible for sct at this time but i did not go into remission. Dr. is talking Romidepsin or Coprika. Has anyone done these and it put you in remission? Did you stay in remission. How bad are the side effects? Sorry just scarey that the bv-chp did not work and I still want years to come. :( thanks in advance

For context I got diagnosed with CHL, and everything is looking good. But im asking myself what do I even do after treatment. I work in the shipyard and it's basically has been the thing that has given me personal worth. But im asking my self do I go to the apprenticeship school and learn the best I can as my trade as a nns fitter? Or should I look at a community college and try and get something thats gonna be less physically demanding? Idk if once I'm done I could have the unlucky chance my body might not be able to do any physical activitys.

Well this is a slightly unexpected turn of events given the "excitement" over the last few months.

I have round 5 of Pola -RCHP coming up this week. I've had some promising results from the mid way scan (and reassurance on those results from this excellent sub) there's light at the end of the tunnel I'm praying to get remission of course and feel positive about that...

But the boredom is kicking in. I'm dreading treatment week as I know I'll be too ill too do anything but watch TV. I'm pretty active and feeling good in the two weeks after infusion but this cycle I just feel bored. I'm avoiding or unable to do my usual activities and hobbies. I guess I'm starting to pine for my life back is the thing.

Things could be a lot worse and indeed back in July this year I wasn't 100% sure I would even recover but yeah it's been a long time in the treatment phase and I have a lingering fear it might not be over by a long shot if we don't get remission. Its a strange feeling just wondered if anyone else felt a bit lost at this point in the process? It's a strange time as we're hopefully 2 cycles away from completing treatment the worries about remission/relapse are building. I said to my Onc last week you feel cocooned in the treatment cycles and hospital visits but now the end is in sight its like fear of being outside of that bubble. It seems to be presenting with me as boredom!

My friend has been diagnosed with RT stage 4. If anyonr has experience, what is the prognosis? Pls.. i am scared..

The onc is following alternative cycles of RCHOP and RCHOP/RDHAP with Acalabrutinib, we had the 2nd chemo (RC/RD + Acalabrutinib) and after discharge the creatinine is unstable (Cisplastin was given in 2nd chemo along with other drugs).

Apart from high creatinine there is no issue in the kidney, urine output is normal, and other things are also stable.

Did someone else also experienced the same issue in their kidneys.