Refractory B cell lymphoma spread lymphatic sustem

Been told that b cell lymphoma has spread in lymphatic system (throughout) had cat y cell therapy, radiotherapy and numerous chemotherapy but now all deflated and not sure what this means…I know it’s incurable but now wondering is there any point? Nothing has worked at keeping it at bay for longer than 2 months, is anything else they are going to offer likely to or is there just no way of knowing?

  • Hi. I am supporting my Dad who has Diffuse Large B-Cell Lymphoma. He was diagnosed in November 2022, following loss of balance and a CT scan revealing a huge tumour in his head. Dad started intense chemo, but sadly it didn’t work. He was scheduled for a stem cell transplant but they cancelled this as told him in May last year her was terminal and they couldn’t cure. He was given Radiotherapy and this worked wonders, but given it was on the brain, he cannot have any further Radiotherapy treatment. He started a new chemo in Jan 24, this year, but this failed to reduce the tumours, and activity. He then asked about Glofitimab. It’s newly licensed on the NHS and generally offered after two failed systemic treatments. Dad started this in March, and it has significantly reduced the cancer activity on his latest PET scan. Ask the team about this drug - it may have a criteria, but it’s worth the ask. Another drug they considered was Ibrutinib. 
    Don’t give up. There are always drugs being developed. Persist with asking your team. Sending my best wishes. 

  • Hello and thank you for contacting us. 

    I am sorry that your B-cell lymphoma cancer has come back despite treatment, This will be a difficult time for you.

    Unfortunately, as I am not a doctor I do not know what treatments they may suggest or offer next. They will be discussing you further at an MDT (multidisciplinary team meeting) and then decide on a plan.

    You must talk through with them how you are feeling about the treatment, and whether it is worth it. The doctors will discuss with you potential side effects and quality of life so you see the risks versus the benefits of further treatment.

    I am sorry I am unable to answer your question more specifically but do also read through our pages on b cell lymphoma, as different treatments are talked through on those pages.

    Take care and if you want to talk anything through with one of the nurses on our helpline the number is Freephone 0808 800 4040. The lines are open from 9 am till 5 pm, Monday to Friday.

    Sarah.