Hello
This is my first post.
I returned from a wonderful Greek holiday to celebrate my 60th birthday in June this year to a diagnosis of Large granular lymphocytic leukaemia (LGLL).
I’m neutropenic - my neutrophils sit at around 0.6 - Just waiting results of Bone Marrow Biopsy.
Hopefully won’t need any treatment just watch and wait.
I’ve never spoken to anyone with Large granular lymphocytic leukaemia (LGLL) so thought I’d post here.
June
1 Like
Hi @June
Am really sorry to hear about your diagnosis . I have a different diagnosis so can’t really help with information or advice but just wanted to say hi
There will be someone who has similar experience and will be able to help am sure !
Take care
1 Like
Hi @June a great big welcome to our forum and I am so glad that you have posted.
Firstly a very happy 60th birthday. Oh, a Greek holiday to celebrate does sound wonderful.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago and my 70th birthday was my best ever.
I have always been on watch and wait (active monitoring)
I attach the Blood Cancer UK details of Large granular lymphocytic leukaemia (LGLL) Understanding LGLL | Blood Cancer UK
Also watch and wait Active monitoring (watch and wait) | Blood Cancer UK
Perhaps it is worth writing down any fears, questions or practicalities for your next medical appointment.
The Blood Cancer UK support line is there for you on 0808 2080 888
I hope someone who has Large granular lymphocytic leukaemia (LGLL) can help you
I look forward to hearing more about you and really look after yourself and please do keep posting
1 Like
Thank you - yes hopefully I’ll just be on watch and wait.
Happy to hear from anyone else with Large granular lymphocytic leukaemia (LGLL) which my consultant tells me is incredibly rare.
1 Like
Hello. I’ve had Large granular lymphocytic leukaemia (LGLL) for about 20 years…I’m now 74 & on the whole, well but with a very low neutrophil count I am very careful around people who may have ‘something’ to pass on to me! Friends don’t visit if they have coughs & colds. I was very lucky to have a consultant when I was first ill who thought he knew the problem, (not ME as GPs thought!)& did bone tests to confirm it. My biggest problem has been most GPs cannot interpret blood results, & ‘file them saying ‘not normal but to be expected’….very helpful! But I did have Covid twice & with treatment lived to tell the tale! A good consultant is the key, who I see 4 times a year…but I have my bloods taken in between if not feeling very well. The disadvantage has been getting travel insurance, some years there has been no problem, some years can’t get it, some years very expensive. But I’ve not been anywhere since the start of covid.
Best wishes
1 Like
Hi @Rachel1950 it is really great to hear from you again with your update.
I keep track of my active monitoring blood test results. Mine also come back ‘not normal but to be expected’ or something like ‘abnormal but known Chronic lymphocytic leukaemia (CLL)’
Yes, travel insurance is often a problem and expensive.
Macmillan Cancer Support have some information
Cancer and buying travel insurance | Macmillan Cancer Support
I hope this helps and please do let us know how you get on.
Look after yourself
Hi
Good to hear from someone else who has Large granular lymphocytic leukaemia (LGLL).
I had a bone marrow biopsy which confirmed the diagnosis and my Consultant wants me to start taking Methotrexate- I haven’t started yet as I had an unrelated op and I’m recovering from that.
A
Most people seem to be on watch and wait - just wondering if anyone else on meds.
Thanks
June
1 Like
Hi @June I think personally, I am not a medical person, but we are all very complex beings, with our own medical histories and individual treatment options.
The Blood Cancer UK support line is there for you on 0808 2080 888.
I attach the Blood Cancer UK details on Large granular lymphocytic leukaemia (LGLL) for you.
Large granular lymphocytic leukaemia (LGLL) | Blood Cancer UK
Really look after and be ever so kind to yourself and please do keep posting
Hi June
My husband was diagnosed with t cell Large granular lymphocytic leukaemia (LGLL) in January and started methotexate in Feb also has a weekly shot to help with nuetrophil count, so far so good.
1 Like
Good to hear from you @Chris4
How are you doing?
Look after yourselves
Hello
Ive just found this Forum.
I was diagnosed via a biopsy at the beginning on 2024. For context I’ve had R A for several years, having all sorts of treatments including Methotrexate and latterly Biologics. Following my 6 weekly blood tests I would regularly get phone call
asking I felt ok as my white blood cell was a bit low. This culminated in, following a BT ordered by my GP, urgent phone calls as I was very neutropenic.
Long story short, I was treated with twice weekly Filgrastim with good results. These tapered off and am now on no treatment, with regular blood tests to keep an eye on me. My Rheumatologist took me off any treatment initially, but now I have 4 monthly infusions of Rituximab. Haematology and Rheumatology agree that my diagnosis is because of my RA.
1 Like
Hi @Julie123 I am so glad that you have found us, a big welcome.
Thanks for running us through what has been going on for you.
You also show so clearly what complex unique beings many of us are and how medications can be used for more than one condition.
It is is positive to see that your haematology and rheumatology departments are working together.
I look forward to hearing more about you so please do keep posting.
Really look after yourself and thanks for joining our forum family
Hi everyone, I am so pleased to find a few people on here with Large granular lymphocytic leukaemia (LGLL) as aside from it being incredibly rare, I have felt quite isolated (since diagnosis in October 2025) particularly because I am living in New Zealand - I emigrated from the UK in 2004 with my then young family.
I have been back to vist the UK regularly and was there in 2021 mid-pandemic to help support my elderly parents. I started having what I now recognise to be symptoms and my pre-existing auto-immune condition (Polymyalgia Rheumatica) was flaring. Unfortunately the GP I visited in the UK suggesting my severe night sweats were menopausal…. at 60+ years old highly unlikely. After returning to New Zealand last year I saw my GP as I was experiencing stomach upsets, wheezy respiratory, extreme fatigue and weakness and he noted my falling neutrophil count. Long story short after bone marrow biopsy I was diagnosed. Such a mixture of relief and also so many concerns.
I am taking methotrexate weekly low dose, and just tackling the symptoms as they arise, but no real changes, I have ongoing mouth abrasions, sores, and thrush, am very tired and the fatigue is huge, still have occasional stomach upsets and a wheezy chesty cough some mornings.
I feel so conflicted that on the one hand I realise this diagnosis is not ‘acute’ and I can more (or less) live and work and carry on without anyone realising, but on the other hand I feel so very different, like I do not know myself any more - I used to be quite active, outdoors all the time gardening, tramping and biking but I am struggling with the different person I seem to have become. I am a former nurse, and even aware that I smell different which is a weird thing to get used to. Ive just not found anyone with this diagnosis before, let alone the symptoms that I am dealing with but perhaps they are similar to other blood cancer types or patients on watch and wait.
Feel very fortunate that the healthcare system here in New Zealand is perhaps not as overloaded as the UK NHS, but concern about my future here (I live alone) work part time and managing my home becoming increasingly difficult so have to face big questions of whether to move back to the UK (one of my daughters is a ward sister A&E).
Glad to find this connection and be lovely to hear how others in this thread are doing.
1 Like
Hi @Kaynot
I have a different diagnosis of Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) but wanted to say hello and welcome!
Your post has reminded me of some of my feelings when I was first diagnosed and how difficult I found some of my feelings to navigate .Those decisions about what to do are difficult and really tough, you feel like you have to change everything sometimes, I would encourage you not to rush into any big choices , please be kind to yourself and give yourself time. i have just started treatment for my Chronic lymphocytic leukaemia (CLL) and it’s really brought home to me that I am going through something, weird as I have had a diagnosis for a while.
You sound amazing and brilliant and am sure you will find others on here that have a similar diagnosis and will be far more useful than I in sharing experiences and wise words. They are a brilliant lot
Please be kind to yourself and let us know how you are doing! Best wishes
1 Like
Thank you so much for your message DottieB. Its just good to know there are others out there who get it and understand. Yes I agree so many variables with blood cancer but a lot of the emotional thinking stuff is very common to us all.
Have you yourself been long on this journey? How is it for you at the moment?
2 Likes
Yes the emotional thinking is very similar for us all , can be hard to deal with sometimes
I have been diagnosed for 2 years and started treatment in September but have had visible symptoms for a while before that.It is funny you wrote about not smelling like yourself as that’s one of the first things I noticed. A weird thing to get used to as you say .
Treatment is generally okay but the fatigue and bowel changes can be a pain and challenging to deal with.
What kind of treatment will you need and do you have a lot of symptoms at the moment??
Always here for a chat , take care x
2 Likes
Yes you do sound as if you have a similar timeline to me (and symptoms!) I was diagnosed in October last year and started on methotrexate weekly - but the symptoms which my consultant assures me are down to low neutrophil count and not the drugs tend to cycle one after the other and similar to what I was experiencing before diagnosis, both stomach upsets, and wheezy cough (in the mornings) though mainly ongoing mouth issues, started as mouth ulcers, now it can be quite large areas abrasions and/or thrush. I developed a severe sore throat over new year, and have just been put on antibiotics as it came back positive for strep. Trying to balance keeping my mouth and teeth hygiene optimal, but not causing more damage by over enthusiastic brushing! And that is just it isnt it - we are all attempting to ‘balance’ and manage symptoms all the time. I certainly appreciate those moments/hours/days when I am feeling just ‘normal’ !
I am grateful that I have good communication with my GP here.
Really nice to feel you understand my rambles! Take care x
2 Likes