Thank you so much. I love your attitude and outlook on life. I'm going to try a great deal harder to take your approach. Thank you again and I look forward to hearing about your continued journey.

This is the page for a LGLL Facebook group that I'm a member of: https://www.facebook.com/groups/tlglleukemiasup.... I've found it to be quite useful.

I was diagnosed back in 2017 (I'm UK based & I'm 53 presently) & have been W&W since then - I can't tell you a lot about LGLL because it's barely bothered me in that time & I've pretty much got on with my life - so that's been my experience to be perfectly honest. Of course everyone's different & many people do go onto treatment but that appears to be quite straightforward & effective, with our biggest concern largely being that of avoiding infection, which can most often be treated easily if taken seriously (which is of course for true for everyone really).

I'm suspecting, at this point, that you probably know more than I do about the condition(!) but I guess what I'm saying is that my experience has been quite relaxed in many ways (I do wonder if there are different approaches to this condition & its treatment on our opposite sides of the Atlantic - you're very fortunate in having one of the world's leading specialists/discoverer of LGLL - I can't recall his name, apologies). My treatment options are Zarzio/filgrastim injections for treating the neutropenia (which I did for a few months but not currently) & Methotrexate for boosting the immune system (again which I tried for a short while but not presently).

So, not sure how much of a help any of that is; my naivety is probably a direct result of the laid back approach for me & the emphasis on just 'getting on with life' (which suits me, tbh), but if you do have any more specific questions please do post them, & I would be very interested to hear of your journey with this.

All the very best to you (& to anyone else here with LGLL!),

Tim.

Log into Facebook

https://www.facebook.com/groups/tlglleukemiasupport

There are a few Facebook groups you can join. Members share a lot of good information.

Not really I am sorry. I have had this type of leukemia over ten years now. And I don't really know if there is any treatment for it

I have T-LGL leukemia and I am on the face book page . There are people there that have different degrees of T-LGL. Hopefully you LGL remains indolent.

I have PH+ with T315I as well.

I can not find people that have both to see how they make out.