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.Thereās an NK Cell type too but itās 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 thatās normal. Itās good we can share things on this forum and thank you for sharing as Iād 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. Iāve 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. Iāll never forget that phone call from my GP saying I needed to isolate as I must not catch Covid!
Iām now on watch and wait. My haematologist described it as an indolent leukaemia and I donāt 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
Hiā¦ yesā¦ I am 54ā¦ I was Diagnosed 18th Sept 2024 with T-cell Large Granular Lymphocytic Leukaemiaā¦ I have yet to find anyone yet with that exact typeā¦ Apparently its rareā¦ At the moment I am on active monitoring and not on medication as of yetā¦ To say diagnosis was an utter shock is an understatementā¦ Physically Iam suffering with extreme fatigue, stiffness, joint and bone aches and i have trouble sleeping throughā¦ My local Hospice, St.Andrews has been an absolute godsend as mentally i am struggling with it allā¦ I became isolated, my own choice due to the fear or catching bugs and virusesā¦ i wear a mask daily and i am a vigilant hand washer and sanitizerā¦ 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 antiviralsā¦ My Neutrophils are very low, my white and red blood count is below normal low and my platelets are lowā¦ so i am classed as having Neutropenia meaning i am immunocompromisedā¦ Hence my fear, Stress and anxiety ā¦ So thats me these days in a nutshellā¦ x
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Thanks @Erica I am still around. As my haemo kept telling me - āitās not going to kill youā!!
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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. Iāll 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 donāt seem to get infections.
Itās an unsettling feeling. My haematologist described it as an indolent leukaemia. My daughters comment was ā Well, Mum , if you must have leukaemia well done for getting lazy oneā. 
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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
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Hi Pru, I have Tcell LGL Leukaemia too, they say itās rare and I donāt think even the doctors know much about it, it becomes scary for myself as Iām a mother of 5 and am 44, I just donāt know what to expect and am currently on Watch and Wait.
I hope youāre doing okay, I donāt come on here that often but you can always reach out and we can exchange notes. I just wish I had more info.
Leanne
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Hi Leanne
Tcell LGL is as I understand indeed very rare.
When I was first diagnosed at 59, 9 years ago it was all very scary. When they used the word Leukaemia it terrified me. I just thought (naively) it was just one condition. I didnāt even know there was acute and chronic. I know now there are many different types. Mine was just discovered after a routine blood test. Anyway nine years down the line I am still thankfully on watch and wait like you. My consultant tells me that in time I will probably need treatment. There is a possibility that I wonāt but if I do, although it isnāt curable it is very treatable and people usually respond well to treatment and can be on treatment for a long time. This doesnāt stop me worrying! I have had to learn to put it to the back of my mind and get on with things. I am lucky that I still feel fit and healthy. Swim, walk, do Yoga and try to have a healthy diet. I have 6 monthly blood tests and this is when my anxiety is at its worst! I have the blood test the week before I see my consultant and convince myself itās going to be worse! The Consultant and his secretary are really good so I am lucky in that respect. I appreciate all healthcare services can work differently it. depending where you are based. I take my hubby in with me when I see the consultant as I can always see a negative even if there isnāt one! He listens to the positives! I take all the vaccines recommended. Flu, covid, pneumonia (my consultant recommends I have pneumonia every 5 years) and the none live shingles. I describe my condition to everyone apart from very close family as a blood disorder. I just feel if I mention the word Leukaemia they would think the worst and ask lots of questions. Thatās just me, everyone deals with this differently.
So I am doing okay thank you so much for asking and getting in touch. Iām more than happy to share things if that helps at all.
Take care
Pru
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