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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I was diagnosed in 2021 after having lymphocytosis for about 6 years. I eventually went to a private haematologist as I got tired of signposting my GP about diagnosis and referral. I have T-cell but NK (Natural Killer)-cell is much more aggressive.
I am currently on watch and wait.
Doug
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Oh @Norwich great to hear from you again and that you are currently on watch and wait.
Look after yourself and take care
Hi… yes… I am 54… I was Diagnosed 18th Sept 2024 with T-cell Large Granular Lymphocytic Leukaemia… I have yet to find anyone yet with that exact type… Apparently its rare… At the moment I am on active monitoring and not on medication as of yet… To say diagnosis was an utter shock is an understatement… Physically Iam suffering with extreme fatigue, stiffness, joint and bone aches and i have trouble sleeping through… My local Hospice, St.Andrews has been an absolute godsend as mentally i am struggling with it all… I became isolated, my own choice due to the fear or catching bugs and viruses… i wear a mask daily and i am a vigilant hand washer and sanitizer… I have been told if i contract a virus i am to use my cancer alert card and make my way into Castle Hill hospital for intravenous antivirals… My Neutrophils are very low, my white and red blood count is below normal low and my platelets are low… so i am classed as having Neutropenia meaning i am immunocompromised… Hence my fear, Stress and anxiety … So thats me these days in a nutshell… x
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Thanks @Erica I am still around. As my haemo kept telling me - “it’s not going to kill you”!!
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Hi @donna.smith6 a great big welcome to our support forum.
I think having a diagnosis can can be very isolating, let alone for you isolating at home as well.
However you are now part of our support forum.
I have found that it does not matter which blood cancer we have on here we often seem to share similar fears, thoughts, feelings and practicalities.
I found that the more I isolated the more fearful I felt.
I also do make sure that my medical team knows of all my symptoms, their severity and impact on my life.
I found that I needed some talking therapy to help me to come to terms with things.
Your local hospice might be able to point you in the right direction if you were interested.
I know you have told us in a nutshell, but I look forward to hearing more about you.
Be ever so kind to yourself and look after yourself
I was diagnosed with TLGL in December 2019 - just as Covid was kicking off. I’ll never forget the phone call I got from my GP telling be I was highly vulnerable and under no circumstances must I catch Covid!
It was a shock but so far so good. On watch and wait and now only get seen once a year. I also have RA so I get regular blood tests for that too. So far my only symptom seems to be very low neutrophils and tiredness. Fortunately I don’t seem to get infections.
It’s an unsettling feeling. My haematologist described it as an indolent leukaemia. My daughters comment was ‘ Well, Mum , if you must have leukaemia well done for getting lazy one’. 
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Oh @Dragonlady great to hear from you with an update.
What a time to get diagnosed.
Yes, it is an unsettling feeling
Really look after and be very kind to yourself