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Just wanted to introduce myself

Hi all I started this journey back in July 2023 feeling fatigued i am 58 years old,after visiting my doctors and having various blood tests and antibiotics I developed a lump on my neck.By this time I was so ill I had a biopsy and got the news that I had a rare lymphoma called Angioimunnoblastic T cell .I am new on this journey and have lots of questions thank you for any help

Answers

  • Hi Grick,

    My name is Dan, I am one of the community champions here at Anthony Nolan and I am currently 3 years post transplant to cure Leukaemia.

    Firstly, I am sorry to hear about your diagnosis - getting told I had cancer was one of the hardest things I have gone through in my life so I understand the pain and fear you must be feeling.

    This is a safe space, so please feel free to ask questions here. They might be answered by other patients like me, or you might get answers from some of the Anthony Nolan staff, including Rachel who is the lead nurse for AN.

    Alternatively if you want to talk to someone then please call our Patient Services team on 0303 303 0303 - they are an incredibly friendly and helpful group of people who can share advice, answer questions or just be there for you when you need a friendly voice on the end of the phone.

    But ask away and we will do what we can to help!

    Thinking of you.
    Dan

  • Thank you Dan for your kind words I am having my white blood cells harvested in December I keep on seeing a reference to T Car .what I don’t understand is my own blood might be used at a later date if my blood is damaged why is it not pre treated like it is with T car ?

  • HI Grick,

    I am posting this on behalf of Emily, our Cellular therapy Clinical Nurse Specialist here at Anthony Nolan:

    Hi Grick

    I'm sorry to hear about your diagnosis of Angiommunoblastic T-cell Lymphoma, this must be a worrying time for you. Understandably, you may have various questions relating to your diagnosis and treatment. We are here for you and if you would like to discuss anything in particular, please give our Patient Services team a call on 0303 303 0303.

    Lymphoma Action has a dedicated webpage on AITL that you may find helpful, please see link below.
    https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma-t-cell-lymphomas/angioimmunoblastic-t-cell-lymphoma-aitl-and

    Please do let us know if we can help with anything in particular.

    Best wishes
    Emily

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