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
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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
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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
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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.
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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
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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
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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.
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Good to hear from you @Chris4
How are you doing?
Look after yourselves