T cell affecting the brain stem


My dad has suffered with undiagnosed T cell lymphoma for 10+ years. His skin has been red, rashy, sore and most recently weeping. 

He got taken in to hospital around 9 weeks ago because he was dizzy and couldn’t stop being sick. His eye sight was also affected and he’s now unable to see very well and his speech has gone too.

The doctors believe that his T cell lymphoma has gone internally is is affecting him neurologically. He has had a 3 week plasma transfusion and is now having chemotherapy every three weeks.

My dad has gone from a healthy active 60 year old to a bed ridden man that I don’t recognise anymore. He’s scared for his life, as are his family. It’s an absolutely devastating time and I feel like we are waiting for a miracle to happen.

Has anyone experienced this with T cell lymphoma before? 

  • Hi  and welcome to this corner of the Community although always sorry to see folks joining us and so sorry to hear about how your dad’s condition has developed.

    I am Mike  and I help out around our various Lymphoma groups. I was diagnosed in 1999 with my Cutaneous T-Cell (skin) NHL and you can hit my community name to see my full story.

    It took 14 years before my condition went from my skin into my neck and bonemarrow. The cancer cells can unfortunately go anywhere in the body and yes some will turn up in the brain stem. There are treatments for these developments so his clinical team will review him and look for the best way to treat this.

    It’s scary times for you all but you have to hold the nerve and look for a positive way to be found for him.

    You will see from my profile I had some challenging times but my clinical teams akways found a way forward and I look for this for your dad.

    Always around to chat ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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