Angioimmunoblastic T-cell Lymphoma - does anyone out there have any experience with this rare blood cancer? It seems a lonely place!

Hi.  I was diagnosed with Angioimmunoblastic T-cell Lymphoma in September 2025, starting with lumps suddenly all over my skin first appearing in June 2025.  Diagnosed at Stage 4 with this relatively  rare blood cancer with around only 140 cases in the UK each year

 I completed six chemo cycles in February 2026 and now await  PET-CT scan at the end of March.  

 Have visited a few online forums and there is very little mention of AITL and any posts are from years back.  Is anyone out there with experience of this? It seems a lonely place! 

  • Welcome to Cancer Chat, Jan70.

    I’m sorry to hear about your diagnosis with angioimmunoblastic T-cell lymphoma. It sounds like it has been a very intense time for you since last summer, and I can imagine that finishing six cycles of chemotherapy and now waiting for the PET-CT scan at the end of March may feel like a long and uncertain wait.

    As you mention, this is a rare type of lymphoma, so it can sometimes feel quite isolating when looking online and not easily finding others talking about the same diagnosis. But you are certainly not alone here, and I hope that by posting on the forum you will connect with others who may have had a similar experience, or who are going through treatment for lymphoma and understand what this time can feel like.

    If at any point you feel it might help to talk things through with someone, you are also very welcome to speak with one of our nurses. They are available on 0808 800 4040, Monday to Friday, 9am to 5pm, and would be happy to listen and offer support.

    I’m glad you found your way to the forum and I hope you will feel less alone here.

    Best wishes,

    Renata, Cancer Chat Moderator

  • Thanks, Renata, for your kind and encouraging reply.  Very much appreciated. Even if there are no direct responses here about AITL, i have found reading other messages generally really helpful.  Thank you.

  • Offline in reply to Jan70

    Good news that my PET CT scan shows complete remission, so will now be seen every 3 months.  Now adjusting to not being immersed in appointments, tests and treatments which is an odd transition and feels like a strange sort of limbo somehow.  But wonderful to be getting my energy back now that chemo sessions are well over and to be doing normal things! 

    Really why I am posting,  in case it may be helpful to someone, is I found out about a dedicated Rare Lymphomas Support Group run by Lymphoma Action which meets once a month online.  Am quite nervous about joining in in May for the first time but can't wait to make those contacts.