Today I got diagnosed with large granular lymphocytic leukaemia so still in shock to say the least. No treatment just three monthly checks. My white blood cells were rising since 2017 but I feel fine no symptoms apart from general aches due to my age of 78 which is natural. I would like to hear from anyone who has this as I don’t know much about it and was told it was rare
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A great big welcome @Julia78 I have another blood cancer but I was in shock for ages.
I am also of regular blood tests called active monitoring (or watch and wait)
I will copy you the Blood Cancer UK details on Large granular lymphocytic leukaemia (LGLL)
Large granular lymphocytic leukaemia (LGLL) | Blood Cancer UK
But personally, and not medically, as you say you feel fine and have no symptoms,
perhaps when the shock subsides just go and continue your life and as Rod Stewart says ’ ‘Love the life you live and live the life you love’
I was diagnosed at this time of year, with another blood cancer, 20 yrs ago, and I remember feeling in a bubble with everyone celebrating the festive season around me.
I find no matter what blood cancer we have often we share similar fears, thoughts, feeling and practicalities.
But I hope others will share their experiences with you.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Just be very kind to yourself and please do keep posting as I look forward to hearing more about you.
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Thank you for your reply. I am not going to let it beat me and carry on as normal. I have diabetes and am on insulin injections
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Welcome @Julia78 , I’m new to the form too and to a diagnosis of a blood cancer. I don’t have any words of wisdom to share at this point apart from welcome and thank you for sharing about your recent diagnosis. I have found this forum and site a great help x
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Morning @Julia78 I’m so sorry to hear about your diagnosis of Large granular lymphocytic leukaemia (LGLL). I can only imagine how you’re feeling right now – it’s a shock, and it’s natural to have a lot of questions and uncertainties.
I understand that this is a difficult time. While my own blood cancer diagnosis like @Erica is different, I know that the feelings of uncertainty and anxiety are likely similar. Just hearing you have cancer is a real shock to our systems.
You’re not alone in this though. There are others who have also been diagnosed with Large granular lymphocytic leukaemia (LGLL), and our online community can provide valuable information and emotional support here for you.
Don’t forget the the phone line or nurse if you ever want to chat or have any questions.
Wishing you all the best
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Hi Angela, thank you for your response. I have obviously had it for sometime as my white blood cells have been creeping up since 2017… wasn’t the news I wanted to hear but I shall carry on as normal. Have a check up the end of January so at least I am being looked after as I am with my diabetes. Apart from arthritis in thumbs and macular in one eye I feel fine and take the dog out. Love pottering about in the garden in the summer of course. Just joined a group on Facebook about LGLLas it is a rare blood cancer
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Dear @Julia78,
Welcome to our forum. I am so sorry to hear about your new diagnosis of Large granular lymphocytic leukaemia (LGLL). I can only imagine what a huge shock that must have been for you and how difficult and overwhelming this time must be. Well done for reaching out to us here and wanting to find out more information. Its so important.
You are correct in saying that Large granular lymphocytic leukaemia (LGLL) is a rare type of blood cancer. It is a type of leukaemia that affects your lymphocytes, which are type of white blood cell. Lymphocytes play an important role in the body’s immune system. I can see that @Erica has already posted our information here for you. I have also linked in some information from Leukaemia Care which I hope you also find helpful Leukaemia Care LGLL
Some people will experience no symptoms when they are diagnosed with Large granular lymphocytic leukaemia (LGLL) and many are monitored regularly with blood tests and reviews. Many people will never have treatment. This is referred to as active monitoring. I have enclosed a link here to some of our information of what this means Blood Cancer UK Active Monitoring
I know you will get lots of information and support here on the forum but if you ever want to talk things through, please feel free to contact the nurses on our support line 0808 2080 888.
Take care
Fiona (support services nurse)
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Hi @Julia78
Welcome to our forum and I’m glad you were able to find us. Thank you for posting.
I can only imagine what a shock it has all been for you. As it is a rare condition, I just wanted to share this recent thread with you, from another of our forum community who also has Large granular lymphocytic leukaemia (LGLL): New Diagnosis LGLL - Recent diagnosis - Blood Cancer UK Online Community Forum You’d be welcome to post there too or they may well see your post, but to let you know that you are not alone.
I hope you will feel well supported here.
Take good care of yourself,
Ali
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