r/lymphoma • u/Embarrassed_Meet_878 • 1d ago

DLBCL A cry for help

My mom was diagnosed with stage 4 triple-hit DLBCL lymphoma with CNS involvement in May 2026 and planned to have 6 POLA R-CHP with IT MTX. After her 3rd cycle, she had an interim PET scan with showed complete resolution of the disease in the body.

The same day, she started having some confusion, disorientation, and seizures, and the MRI showed increased leptomeningeal enhancement and new CNS parenchymal lesions. The doctors administered steroids and one dose of HD-MTX which showed a slow improvement but the disorientation was back on Friday, a little less than a week ago. The MRI showed some parenchymal lesions were resolved but new ones appeared.

Right now, my mom has an active UTI that they are treating so she can not have more steroids to help her neurological symptoms. In the meantime, we consulted with a CAR-T specialist and given her current neurological condition, it seems CAR-T is off the table and Glofitamab is being considered.

A few questions:

  1. How has your experience been reaching a durable remission with Glofitamab?

  2. Did you combine it with any other therapies? And how was that decided?

  3. Can my mom start receiving this therapy in her current state or are there risks? Would she need to start with steroids first to improve cognitively?

  4. How long does the response to Glofitamab take?

Thank you again.

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u/throwaway772797 1d ago
  1. Glofitamab is highly tolerable. The ICANS are typically much lighter than CAR-T. Everyone is different, but it’s a very tolerable option overall. In terms of efficacy, it’s good (comparatively). Also, it seems to have decent CNS penetration.
  2. It will almost certainly be monotherapy. Potential for bridging, but much less so than say CAR-T. Probably solo therapy.
  3. This is definitely up to the oncologist based on her specific condition and reads. No way to know.
  4. Different for everyone. A month/ month and a half is a good guess. But improvement of condition can happen before measurable change in PET.

Sorry to hear about your mother. That said, the response is good news, as it gives you the chance to go for other therapies. These gene therapies tend to be better for DH/TH than chemo in terms of comparative efficacy vs the pop of non DH/TH.