T-cell Large Granular Lymphocytic Leukaemia T-LGLL

I see this Blog is well over 3 years but since I can not really find any other place to go, I thought I would try sending a message.

I was diagnosed nearly 7 years ago with Smoldering Myeloma.

I go for Bloodwork every 4 months-my Oncologist says I a m still Stable so I move on with my life.

However, my latest Bloodwork and Peripheral Blood Smear on 1/2/2025 has shown that I have Large Granular Lymphocytes with Neutropenia (Absolute 1.23)

I have NEVER had an Absolute that low in all the years I have been being tested, and last year my Blood Smear said No Abnormalities.

I do NOT have Lymphocytosis but as stated above, I do have Low Neutrophils.

I was in the Hospital a week prior, on 12/28/2024, and the very next day I did not feel well.

I got the Chills, a slight temperature of 99.1  (That is actually high for me since I usually run low at 97.8).

I had a runny and stuffy nose and a lot of phlegm.

I have read that there are approximately 10-15% of NORMAL Large Granular Lymphocytes in the circulating blood, however, according to the report it states:

Lymphocytes are Normal in Number, They appear Mature With Relatively Prominent Forms with Moderate To Abundant Cytoplasm and some Cytoplastic Granules.

This is seen in Indolent Large Granular Lymphocyte Leukemia.

However, I read that Lymphocytes With Prominent Forms and Moderate To Abundant Cytoplasm Are Typically Referred as "Reactive Lymphocytes"

As Far as Large Granular Lymphocytes they are defined as: Large Lymphocytes with Round Or Reniform Nuclei, Broad Cytoplasm and Azurophilic Granules In The Cytoplasm.

It seems, at least to me, the only reason my Lymphocytes would be considered Large Granular as opposed to Reactive, would be the (SOME CYTOPLASTIC GRANULES).

Reactive Lymphocytes are know to be activated due to Viral Infections  and Bacterial Infections such as Strep and Allergic Reactions or Autoimmune Diseases.

As stated above, I was sick for nearly a week after coming home from the hospital.

What stands out for me, and makes me lean more towards the LGLL is the fact that I have Mild Neutropenia.

I guess I am hoping that on my next blood test, Feb 3rd, my Neutrophils will go back up to my normal range.

Thanks for listening, if anybody is still here.

I would love to speak with you.

Dee

Hi Dee, we might be a small group due to the rarity of LGLL but you are not alone. If it helps to hear my neutrophil count ranges from 0.8 to 1.8 but at no point has this indicated a need for treatment, I am told if I drop to 0.5 they will consider treatment otherwise we just continue with Watch and Wait. I was diagnosed  six years ago and still have had no treatment and continue with a normal life once I got over the stress of diagnosis. Not sure what else I can tell you, but feel free to message me. 

Hi Dee

In the blood film for LGLL, one of the things they look for is clonality ( https://ashpublications.org/hematology/article-abstract/2024/1/143/526187/Large-granular-lymphocyte-leukemia-a-clonal?redirectedFrom=fulltext ) over 40% of people with T-LGLL also have some autoimmune disorder. I was tested for autoimmune disorders but none were found.  

The rest of my full blood count is fine but I do have an enlarged spleen. 

Regards

Doug

Hi HappyChap: Sorry It Took So Long To Respond Back I Hope You Are Doing Well

I Just Had More Blood Tests And A Bone Marrow Biopsy

They Found Rare Large Granular Lymphocytes (Again) However, As Well As An Increase In My Plasma Cells 30-35% (Smouldering Myeloma) Almost 7 Years ago Diagnosed And The Plasma Cells Were 20-24% However, My "M" Spike Has Increased to 1.8

Dealing With The Myeloma Was Bad Enough Now They Find The Large Granular T Cells.

I DO Not Have Lymphocytosis My Lymphocyte Percentage on 1/2/2025 was 54% And Absolute Was 2.6 Howvwe Stated Previously My Neutrophils Were 1.2

On This BMB And Bloodwork My Neutrophils Went Up To 3.18 (Absolute) Although Percentage Was Down To 46.3%.

My Lymphocyte Percentage Came Down To 40.1% And Absolute Went Up To 2.8 (Still Normal Range)

When Do They Treat? ONLY When Neutrophils Go Down To <.5?

The Little That I Have Been Able To Find On Large Granular T-Cell Leukemia States You Can Live A Normal Lfe Span And That It Is Treatable.

Have You Read This Too?

I Would Love To Hear Back.From You

DEE

Hi Dee

Sorry about your LGLL diagnosis on top of your existing diagnosis. 

https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/large-granular-lymphocytic-leukaemia-lgll/chronic-lgll/chronic-lgll-treatment-and-side-effects/

if you have not already seen it, this is quite informative. 

When I first saw my haematologist she went to great pains to tell me that LGLL would not kill me!!  

https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/large-granular-lymphocytic-leukaemia-lgll/understanding-lgll/

This might be useful in understanding this particular form of blood cancer. 

Hope this helps

Regards

Doug

Hi Dee. Thanks for the reply, good to hear from you. I think the two links from Doug are the very best I have seen and I can’t add anything along those lines. However looking at it in a different way and your comment about ‘you can live a normal lifespan and that it’s treatable’ has brought my thinking on this together. If you’re like me when you are first diagnosed it is a huge shock mostly amplified by the fear of the unknown and lack of information, so we immediately go into data gathering mode, seeking out research and pages of technical test data that to be frank I barely understood. All the time I was doing this the physical symptoms or lack of them didn’t change and the concern level if any thing got worst, as they say a little bit of knowledge is a dangerous thing. So standing back and looking at myself I realise that given that this isn’t going to kill me and if ever it gets necessary can be treated, the research and worry I’ve done over the last few years has achieved nothing and become the main negative symptom of this diagnosis. I’m aware this sounds like a suggestion to stop worrying and that’s not realistic but I have now decided to put boundaries on my worry and research and hence stress. Today I’m fine, if I’m not tomorrow I will sort it or get help to do that. And the sun is shining too

Hi Happy Chap

That information gathering phase can be problematic - even with the small amount that has been carried out around T-LGLL!!  I am fortunate that I have been involved with clinical research for a number of years. The last cancer research I was involved with was 5 years on the National Cancer Research Institute Cancer Screening, Prevention and Early Diagnosis committee followed by 7 years of being a co-applicant for funding and an Executive Committee member of the Policy Research Unit for Cancer Awareness, Screening and Early Diagnosis which encompassed a number of research projects and gave advice to the Department of Health and Social Care. I have also been involved with research around dementia, hip fractures and delirium and, currently advise on research into Hepatitis B diagnosis.  I needed something to do in retirement!!  As well as knowledge of research it has also given me an ability to deal with the NHS!!

regards

Doug 

Hi all

its been a while. If you are like me and on immunotherapy medication, mine is ciclosporin, you need to take note of the fact that this medication reduces your resistance to skin cancer. I have recently has a squamous cell carcinoma removed from my arm, I was initially told this was not cancerous, and given steroid cream to treat it, when it didn’t go away I got a second opinion and told it was cancerous. It might be that I was always going to get this skin cancer or it might be the drugs that I have been taking for 3 years did not help this condition. 
So, keep covered up folks, life is out to get you!

What are you taking ciclosporin for?  It is not the usual T-LGLL medication. 

Doug 

Hi

I assume it's for my haemolytic anaemia and the cancer. I have a very large spleen too, which i keep asking for them to remove, but they know best. I have RA in addition and the immunosuppressant helps with the fact that my white blood cells are attacking many of my red blood cells.