Recently started treatment for t cell Large granular lymphocytic leukaemia (LGLL) and wondering if anyone else on here
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Hi @Chris4 a welcome and I am so glad you have found us.
I hope others will be able to share their experiences of Large granular lymphocytic leukaemia (LGLL) .
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
What I hope is that experiences you will read of people with different blood cancers on here often show similarities in fears, thoughts, feelings and practicalities.
How are you doing?
Really look after yourself and I look forward to hearing more about you
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T Cell ones are rare and not well understood.I have Mycosis Fungoides a T Cell Lymphoma and I have read about T Cell Leukemias in my researching of these unusual disorders.Most Leukemia and Lymphoma is B Cell.There’s an NK Cell type too but it’s very rare and usually lumped in with the T Cell ones.You generally end up at a regional centre where doctors have experienced T/NK Cell malignant conditions rather than the nearest hospital.
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HI @Chris4 , I have TLGLL although not on treatment at the moment (Watch and Wait). Was finally diagnosed in August 2022 after months of tests . This forum has been a source of information and support for me. All the best to you. Joe (London, England)
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Hi,
I was diagnosed with Large granular lymphocytic leukaemia (LGLL) - T cell in 2016 and I have been told it is very rare. I am still on watch and wait and I am told I will probably have to have treatment at some stage, but that it is very treatable. I like most people worry after every blood test - guess that’s normal. It’s good we can share things on this forum and thank you for sharing as I’d not seen anyone on here with Large granular lymphocytic leukaemia (LGLL). I try and stay positive and put it at the back of my mind most of the time but I do have my moments! Take care
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I was diagnosed with TLGL at the end of 2019. I’ve had RA for years and was eventually referred to haematology after issues with very low neutrophils. It was scary to be told I had a blood cancer just as Covid was kicking off. I’ll never forget that phone call from my GP saying I needed to isolate as I must not catch Covid!
I’m now on watch and wait. My haematologist described it as an indolent leukaemia and I don’t have any symptoms. I have 6 monthly blood tests and see my Haematologist - so far so good.
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Hi @Dragonlady I am so glad that you have found us.
What a time to get diagnosed just before Covid hit us all.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago and I can still see that day as if it were yesterday.
I also basically isolated for nearly 3 yrs, but I expect it felt a rather lonely place as you were early diagnosed.
I have been on watch and wait (active monitoring) for 20yrs, so I am a very lucky girl
Please do keep posting as I look forward to hearing more about you.
Really look after yourself
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