Recent diagnosis

[GrannyTWest]

Last November I was diagnosed with T cell large granulocytic leukaemia which was a bit of a shock as I have no real symptoms, perhaps I'm a bit tired but who, at 68 yrs, isn't. Anyway I'm on watch and wait which is good. Has anyone else got this? How are you? Can you tell me about your experience?

[Jm954 Administrator]

Hi GrannyTWest,

sorry to hear about your diagnosis of LGL - Large granular lymphocyte leukemia. Your diagnosis is pretty rare, is a T cell leukaemia this site is for people with Chronic Lymphocytic leukaemia which is a B cell leukaemia and has a very different clinical history and treatment,

This article from 2017 gives a good overview of LGL and some of the treatment options allthough, like CLL treatment, there are new ones coming along all the time. There are some great pictures of the cells as well. 10 year survival is more than 70%

bloodjournal.org/content/12...

I hope you are being seen at a specialist centre because this is such a rare leukaemia that not many doctors will have any experience of it at all.

I'm sorry we can't be more helpful and wish you well

Jackie

[gardening-girl]

Hello GrannyTWest, I was diagnosed with CLL in 1997 and then developed T cell LGL in 2013. The T cell LGL clone has remained stable at about 5K/uL and as far as I know has caused no problems. I hope that it will be the same for you.

gardening-girl

[GrannyTWest in reply to gardening-girl]

Thanks for this gardening-girl.

[Jm954 Administrator]

Yes, probably no one else here with LGL because this site is for CLL. There is a Leukaemia Care site on HU that caters for all types of leukaemia. That might be more suitable.

Here is the link: healthunlocked.com/leukaemi...

Regards

Jackie