I was diagnosed in 2024 with Large Granular lymphocytic leukaemia but have been on watch and wait since then with check ups. I visited the haematologist yesterday and he finds me a weird patient as I now show signs of essential thrombocythemia due to a rise in platelets plus he mentioned myeloprociferative neoplasms. He thinks I might need a bone marrow biopsy which is scary but meanwhile has put me on aspirin75. I don’t have another appointment until December when he will look further into my tests. I also have chronic kidney disease stage 3 and diabetes stage 2 on insulin injections so anxious times. I suffer with fatigue and therefore cannot be bothered to do as much as I used to
Hi Furrycat and warm very welcome to the Macmillan Community although I am sorry that you had to find us and especially sorry to hear about LGL diagnosis. I am Mike and I help out around our Blood Cancer groups.
As you may know LGL is a slow growing Leukaemia…… (rather like my first type of incurable Lymphoma)
There are two main types of LGL Leukemia…… based on the type of cell involved with T-cell LGL Leukemia (T-LGLL) being the most common form with NK-cell LGL Leukemia (NK-LGLL) being a less common type.
I don’t have Leukemia but I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….
General Leukaemia
…… support group as this is a safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
I will keep an eye open for you in the group.
