Secondary CNS T Cell Lymphoma

Hi. My mum was diagnosed with T Cell intestinal non Hodgkin’s lymphoma in April 2023. She had 6 rounds of chemo followed by a stem cell transplant (autologous). She was given the ‘all clear’ in February 2024 then in May 2024, after presenting with fatigue, weakness and confusion, attended A&E, had an MRI and was diagnosed with Lymphoma in the brain. Things seem to change so quickly. One minute we’re told she can go home and have chemo as an outpatient, next minute the steroids haven’t worked, her condition has worsened and she’s lost use of her left hand side. She’s now been in hospital for 3 weeks and has just finished her first round of chemo. We’ve been told the tumour is incurable but the aim is to shrink it with chemo so she can go home at some point. Her diagnosis seems so rare and I’m struggling to find information/stories of people who have been through similar. Anyone out there experienced/experiencing similar?  

  • Hi Natalie951,

    Welcome to Cancer Chat. I'm sorry to hear of the situation with your mum - this sounds like a lot to deal with and I can understand all the changes and confusion must be difficult. I hope that she is able to go home soon.

    My reply here will give your post a little boost, so a few more people should see it. Hopefully you'll get some more replies soon, particularly if others with similar experience see it. Either way, I hope that this forum can be of some help to you. It is a supportive community and we are always here if ever you need it, even if it's just to write things down.

    You can also use the search function at the top of the page if you'd like to find other discussions or people to connect with.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator