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Large Granular Lymphocytic Leukemia

What is Large Granular Lymphocytic Leukemia?

Large granular lymphocyte leukemia or LGLL is a rare cancer of a type of white blood cells called lymphocytes. Lymphocytes are part of the immune system, the natural defense of the body that helps in protecting against infections. In LGLL these lymphocytes are bigger than normal and contain granules that can be seen when the blood is examined under a microscope.

LGLL can be further subclassified into T-LGLL and NK-LGLL, indicating the specific type of lymphocyte affected (T-lymphocytes in T-LGLL and natural killer cells in NK-LGLL).

It equally affects both men and women and it is more frequent in older adults, with 60 being the average age at diagnosis.

 

Synonyms

  • Large Granular Lymphocyte Leukemia
  • T cell Large Granular Lymphocyte Leukemia
  • NK cell Large Granular Lymphocyte Leukemia
  • Tγ-lymphoproliferative disease
  • Lymphoproliferative disease of granular lymphocytes
  • Granular lymphocyte-proliferative disorders

Large granular lymphocyte leukemia or LGLL is a rare cancer of a type of white blood cells called lymphocytes. Lymphocytes are part of the immune system, the natural defense of the body that helps in protecting against infections. In LGLL these lymphocytes are bigger than normal and contain granules that can be seen when the blood is examined under a microscope.

LGLL can be further subclassified into T-LGLL and NK-LGLL, indicating the specific type of lymphocyte affected (T-lymphocytes in T-LGLL and natural killer cells in NK-LGLL).

It equally affects both men and women and it is more frequent in older adults, with 60 being the average age at diagnosis.

Rareshare would like to acknowledge Dr. Thomas P. Loughran, Jr., Director of the University of Virginia Cancer Center for reviewing this content.

LGLL comprises from 2 to 5 % of all chronic lymphoproliferative disorders. Worldwide, it has an annual incidence of 1 in 250,000, which is the number of new cases that are diagnosed per year.

Name Abbreviation
Large Granular Lymphocyte Leukemia LGLL
T cell Large Granular Lymphocyte Leukemia T-LGLL
NK cell Large Granular Lymphocyte Leukemia NK-LGLL
Tγ-lymphoproliferative disease LGLL
Lymphoproliferative disease of granular lymphocytes LGLL
Granular lymphocyte-proliferative disorders LGLL

The cause of LGLL is currently unknown, but it seems to be associated with autoimmune disorders, especially with rheumatoid arthritis. An autoimmune disorder is another problem of the immune system. In these disorders, the immune cells do not recognize the healthy tissues of the body and mistakenly attack them as if they were foreign. Sometimes LGLL can also be associated with clonal B-cell disorders, the uncontrolled proliferation of another type of white blood cells called B-cells.

Recently, research aimed at finding the genetic cause of LGLL found mutations or alterations in the STAT3 gene in 40% of the patients analyzed. STAT3 is what is known as an oncogene, its aberrant activation can cause cancer. Although these results have been confirmed in additional cohorts or groups of patients, it is important to keep in mind that STAT3 alterations are not the only cause of LGLL.

Two thirds of the individuals affected with LGLL present neutropenia, a reduced number in blood of neutrophils. Neutrophils are a type of white blood cells that help in fighting infections. A reduced number of red blood cells (anemia) is also common, but less than neutropenia.

People with LGLL might suffer from recurrent infections. Fever, night sweats and unintended weight loss can occur but these symptoms are not common.

About 25 to 50 % of the patients may present an enlargement of the spleen or splenomegaly. Enlargement of the liver (hepatomegaly) is not infrequent. In general, swollen lymph nodes (lymphadenopathy) are not seen in this disease.

The diagnosis is established by finding an increased number of large granular lymphocytes (LGL) which are clonal. Clonal means that all the LGL are originated from the same original abnormal LGL cell that slowly copies itself exactly over and over again. Determination of an increased number of LGL can be made by examining a blood sample under the microscope. Flow cytometry in conjunction with a CBC (complete blood count) can also be used to quantitate the number of LGL and also determine whether the LGL are of T cell or NK cell origin. Clonality in the T cell form of LGLL is evidenced by finding clonal rearrangement of the T cell receptor gene. Each T cell presents a different and unique T cell receptor gene due to a process known as rearrangement. If the excess of LGL all have the same T cell receptor gene, that means that they are clonal, i.e. that they derived from the same original T cell. It is difficult to determine clonality in patients with the NK type of LGLL as there is no test available to detect clonal NK cells. The diagnosis of LGLL then can be readily established by these blood studies so that an initial marrow aspirate/biopsy is not usually needed. Marrow studies then are reserved for specific indications outside of the usual diagnostic workup. Genetic testing for alterations in the STAT3 gene could also be performed but the clinical relevance of this test is part of ongoing research studies.

Blood samples are taken for determination of LGL count and clonality. Tests to establish diagnosis would include a CBC (complete blood count) and differential, review of the peripheral blood smear (the examination of the blood under the microscope), flow cytometry, and T cell receptor gene rearrangement. In the vast majority of patients, a marrow aspirate/biopsy is not needed to establish the diagnosis. 

If there are no symptoms, then it is not always necessary to treat this disease. Treatment is advised in the case of symptomatic anemia, severe neutropenia or moderate neutropenia with recurrent infections.

The treatment of LGLL is based on what is called immunosuppressive therapy, a treatment that lowers the activity of the body’s immune system.

Immunosuppresive drugs used to treat LGLL include single agent methotrexate, oral cyclophosphamide and cyclosporine. In a minority of patients, resistance can arise to these treatments making them no longer effective. When this occurs, purine analogues or anti-CD52 antibody (Alemtuzumab) can be used. The illness is a chronic disease and immunosuppressive therapies can improve the blood counts. Unfortunately, however, there is no known cure at this time.

Most of the patients present with a chronic slow-growing LGLL. Some patients may not have many symptoms and not need treatment for some time. There are patients that never need therapy. The prognosis varies from person to person depending on the severity of the symptoms but overall there is not a significant effect on the lifespan.

On very rare occasions, LGLL can present as an acute fast-growing leukemia. This is an aggressive disease that is resistant to therapy. In particular patients with an NK type of LGLL need to be distinguished from the acute NK leukemias, that occur primarily in the Far East.

LGL Leukemia Patient Registry

The LGL Leukemia Patient Registry at the University of Virginia is currently the only national registry for patients with known or suspected LGL leukemia.  Patients enroll by giving informed consent and can then donate specimens to help advance research of the disease.  More information about the Registry can be found by clicking on this link: https://cancer.uvahealth.com/cancers-we-treat/specialty-programs-clinics/lgl-leukemia/lgl-leukemia-registry

To contact the LGL Leukemia Registry Coordinator, please call 434-243-8431

Additional LGL Leukemia Information

If you would like to view Podcasts, find patient support resources, or read lay person’s educational content about LGL leukemia, click on this link:  https://cancer.uvahealth.com/cancers-we-treat/specialty-programs-clinics/lgl-leukemia/Learn-About-LGL-Leukemia

www.lls.org/leukemia/large-granular-lymphocytic-leukemia

www.hopkinsmedicine.org/kimmel_cancer_center/centers/bone_marrow_failure_disorders/large_granular_leukemia.html

Koskela, H. L., et al. (2012). "Somatic STAT3 mutations in large granular lymphocytic leukemia." N Engl J Med 366(20): 1905-1913.

Lamy, T. and T. P. Loughran, Jr. (2011). "How I treat LGL leukemia." Blood 117(10): 2764-2774.

Lamy, T. Moignet A., Loughran TP Jr. (2017) "LGL Leukemia:  from pathogenesis to treatment." Blood 129(9): 1082-1094.

Neff, J. L., et al. (2013). "Distinguishing T-cell Large Granular Lymphocytic Leukemia from Reactive Conditions: Laboratory Tools and Challenges in Their Use." Surg Pathol Clin 6(4): 631-639.

Oshimi, K. (2017). "Clinical Features, Pathogenesis, and Treatment of Large Granular Lymphocyte Leukemias." Intern Med 56(14): 1759-1769.

Shah, M.V., Hook C.C., Call T.G., Go R.S. (2016). "A population-based study of large granular lymphocyte leukemia." Blood Cancer J. 6(8):e455.

 

 

Side effects of immunosuppressive drug Created by sybaten
Last updated 22 Sep 2017, 01:03 AM

Posted by sybaten
22 Sep 2017, 01:03 AM

I was diagnosed with T-LGL leukemia last year.  I tried treatment using MTX for about 4 months. Unfortunately I didn't respond to MTX and suffered from severe fatigue during treatment. After stopping treatment blood cell count recovered a little(RBC2.9M→3.2M/μL), but decreased again(RBC2.8M/μL) after 3 months. Therefore I consider that next treatment using another immunosuppressive drug will be necessary sooner or later. Kind advice from friends who have experienced treatments using MTX and cyclophosphamide will be appreciated regarding comparison of side effects between each drug. Referring some medical information sites, description about side effects of cyclophosphamide seems worse and it makes me hesitate. I understand that a side effect depends on each of us. Suggestion about another option will be also appreciated. Latest literature of Lamy et al. reported that the complete response rates of these agents are as follows: ~21% for MTX, 33% for cyclophosphamide and <5% for cyclosporine.

Invitation to Podcast Discussion RG/RareShare Ask the Experts LGLL Series-IV Created by deepask1
Last updated 8 Nov 2016, 03:43 PM

Posted by deepask1
8 Nov 2016, 03:40 PM

p=. Rare Genomics Institute and RareShare are proud to invite you to the upcoming podcast discussing: p=. *Living with Large Granular Lymphocytic Leukaemia (LGLL) – A Clinical & Research Perspective- Series III* Featuring Dr Jaroslaw P. Maciejewski, MD, PhD and Dr. Thomas P Loughran, Jr, MD p=. DATE: 11/18/2016 p=. TIME: 9:00 AM-10:00 AM EST (6:00 AM-7:00 AM PST, 1:00 PM-2:00PM GMT) Podcast Dial in Link, "please click here":https://www.youtube.com/watch?v=pqp8wwlxMOU More details available "here":http://www.raregenomics.org/rg-events/ Are you interested in learning about recent clinical and research developments and available treatment options for LGLL? What questions would you ask about symptom management of LGLL if you had the experts at hand? Do you have any burning questions you have wanted to ask about LGLL but haven’t had the chance to? "Here":https://docs.google.com/forms/d/e/1FAIpQLSe_hwdnuNquKr02sU7rAMpfNMuEdbmLVWa9gFMj9yYDVgxn7g/viewform is that chance! Submit your question(s) NOW with this "RareShare LGLL Podcast Registration form":https://docs.google.com/forms/d/e/1FAIpQLSe_hwdnuNquKr02sU7rAMpfNMuEdbmLVWa9gFMj9yYDVgxn7g/viewform and/or register to attend the program. The first 25 minute segment will feature the experts discussing the latest developments in LGLL regarding genomics and biotechnology research, while the remaining 20 minutes the guest speakers will answer your questions/concerns/issues.

Unexpected complete remission from synthetic cannabinoid Created by J_Doe
Last updated 30 Aug 2016, 02:57 PM

Posted by scarecrow
30 Aug 2016, 02:57 PM

glad to see this, thanks for keeping us updated

Posted by lgll
30 Aug 2016, 04:21 AM

Wow! Good for you J_Doe. Did you there is a Facebook page for lgl with tons of info?

Posted by J_Doe
29 Aug 2016, 06:32 PM

Another follow up… Abs Neutrophils 3.2k Abs Lymphs 1.7k Hemoglobin 14.6 Platelets 202 Abs Mono 0.4 Red Blood Cell 5.01

View Full Thread (5 more posts)
NEW LGL Leukemia Program at UVA! Created by tinacancio
Last updated 30 Aug 2016, 04:23 AM

Posted by lgll
30 Aug 2016, 04:23 AM

Thanks for the info.

Posted by tinacancio
20 Aug 2015, 02:08 PM

Per UVA Health System​ and the LGLL Research Team, "I am happy to report that we have just gone live with our new LGL program website! We are now featured on UVA’s Cancer Center site as a Specialty Program and Clinic. This is of course just the first phase of release with plans for more scientific and interactive content to be added in the coming months." This is such a wonderful and comprehensive NEW program specifically for LGLL patients only! The first of it's kind worldwide and the LGL Leukemia FOUNDATION is so happy to be apart of this groundbreaking research. CLICK HERE FOR MORE INFORMATION! "Your link text":http://cancer.uvahealth.com/cancers-we-treat/specialty-programs-clinics/lgl-leukemia

Invitation to Podcast Discussion RG/RareShare Ask the Experts LGLL Series-III Created by icrispe
Last updated 8 Mar 2016, 02:54 PM

Posted by icrispe
8 Mar 2016, 02:52 PM

p=. Rare Genomics Institute and RareShare are proud to invite you to the upcoming podcast discussing: p=. *Living with Large Granular Lymphocytic Leukaemia (LGLL) – A Clinical & Research Perspective- Series III* Featuring Dr. Bogdan Dumitriu, MD and Dr. Thomas P Loughran, Jr, MD *DATE: 03/25/2016* *TIME: 2:00 PM-3:00 PM EST* (11:00 AM-12:00 PM PST, 6:00 PM-7:00PM GMT) Podcast Dial in Phone # 1-302-202-1112, Enter Podcast Dial in Code # 122681 More details available "here":http://www.raregenomics.org/rg-events/ Are you interested in learning about recent clinical and research developments and available treatment options for LGLL? What questions would you ask about symptom management of LGLL if you had the experts at hand? Do you have any burning questions you have wanted to ask about LGLL but haven’t had the chance to? *Here is that chance!* Submit your question(s) NOW with this "RareShare LGLL Podcast Registration form":http://bit.ly/1RPYaw3 and/or register to attend the program. The first 25 minute segment will feature the experts discussing the latest developments in LGLL regarding genomics and biotechnology research, while the remaining 20 minutes the guest speakers will answer your questions/concerns/issues.

Thank you : RareShare/RGI LGLL Podcast II -11/24/2015 Created by deepask1
Last updated 25 Nov 2015, 03:51 PM

Posted by deepask1
25 Nov 2015, 03:45 PM

Dear RareShare LGLL Community Members, We hope you enjoyed the second podcast of our series and gained some knowledge to help you in your journey. Thank you so much for your continuous participation in our second podcast series on: p=. “Living with Large Granulocyte Lymphocytic Leukemia (LGLL)-A Clinical & Research Perspective” featuring Dr Thomas P Loughran, MD and Dr Lubomir Sokol, MD, PhD As promised here are the recording links, click here to replay the event 1) "LGLL Podcast Link MP3":http://k003.kiwi6.com/hotlink/ey5e69ks0o/LGLL_Podcast_Session_II_11_24_2015_.mp3, 2) "LGLL Podcast Direct Link":http://kiwi6.com/file/ey5e69ks0o and 3) "LGLL E-book":http://static1.squarespace.com/static/55899403e4b0dbf7728075b1/t/5655d08de4b0f33a7abe32d8/1448464525899/LGLL+eBook+New.pdf We would love to hear your feed back and please take a moment to fill the "Feedback Form: LGLL II podcast":https://docs.google.com/forms/d/1kQxglI9jzU9ymuKdTEWKc6Gs-fot7ng1yqQQ-hAiYsk/viewform. We look forward to your participation in our future events and at RareShare Community & Rare Genomics Institute, Sincerely, Deepa Kushwaha, PhD Project Manager (Scientific Programs) Rare Genomics Institute/RareShare http://raregenomics.org/rareshare/

RareShare/RGI LGLL Podcast Invitation-Series II Created by deepask1
Last updated 18 Nov 2015, 03:40 PM

Posted by deepask1
18 Nov 2015, 03:40 PM

Dear RareShare LGLL Community Members, We are proud to invite you for the upcoming second podcast session discussing: p=. “Living with Large Granulocyte Lymphocytic Leukemia (LGLL)-A Clinical & Research Perspective” featuring Dr Thomas P Loughran, MD and Dr Lubomir Sokol, MD, PhD on November 24, at 4:00 PM EST or 1:00 PM PST 0r 9:00 PM GMT (Podcast Dial in Phone # 1-302-202-1112, Enter Podcast Dial in Code # 122681) Details can be found in "here":https://raregenomics.squarespace.com/rare-genomics-news/2015/11/17/invitation-to-upcoming-podcast-discussion! The 45 minute segment will feature experts discussing the latest developments in LGLL. "Here is your another chance to ask any question/concern/issue you may have about LGLL. Submit your question(s) NOW with this form and/or register to participate in the program.** "RareShare LGLL Podcast Registration form":https://docs.google.com/forms/d/1j8a_ekbTdBueN_CfcaSSgedafc3EE_qqPgQO9rvSpmM/viewform On behalf of Rare Genomics Institute and RareShare we really appreciate your participation,

raising Funding on National Level for research Created by Kat1234
Last updated 8 Jun 2015, 07:15 PM

Posted by tinacancio
6 Jun 2015, 03:26 PM

Hi Kat1234 - Millions of dollars has been raised for LGLL specific research, in the last few months via the LGL Leukemia FOUNDATION and UVH and the LGL Leukemia Registry, via a private donor we secured. You can learn more about it under our "Files" section in our CLOSED Facebook Support Group. The OFFICIAL document is uploaded for your convenience. "Your link text":http://www.lglleukemiafoundation.org Kind regards, The LGL Leukemia FOUNDATION

Posted by Kat1234
5 Jun 2015, 12:37 PM

Given that this is a rare disease that doesn't garner a ton of attention, how can we raise awareness or assist in securing additional funding for research to find a cure? Anyone have any ideas? Let's do this!

LGL Bone a Marrow Transplant Created by Kat1234
Last updated 6 Jun 2015, 03:38 PM

Posted by tinacancio
6 Jun 2015, 03:38 PM

Kat1234 - The LGL Leukemia FOUNDATION has a wonderful relationship with Dr. Loughran and UVH. If you would like to learn more about it and his views, please contact us. "Your link text":http://lglleukemiafoundation.org/ Kind regards, The LGL Leukemia FOUNDATION

Posted by Kat1234
28 May 2015, 07:17 PM

Hello- I originally posted this in a thread but realized I can just start a new topic! Does anyone know what Dr. loughrans take on bone marrow transplants are particularly for young patients? Was hoping it would be addressed in the rare share podcast, but it wasn't! Any information is much appreciated

raising Funding on National Level for research Created by Kat1234
Last updated 5 Jun 2015, 12:37 PM

Community E-books
Title Description Date Link
LGLL Diagnoses, Therapies and Hope (Rare Genomics Institute & RareShare) Large granular lymphocyte leukemia (LGLL) is a rare genetic disorder affecting the immune system. LGLL is characterized by enlarged lymphocytes and a decline in red blood cells and neutrophils. For more information on LGLL, see the LGLL ebook. 02/27/2017
Community Podcasts
Title Description Date Link
LGLL Podcast Series-02/13/15

Featuring Dr Thomas Loughran (UVA), Dr Thierry Lamy (Rennes University, France) and Dr Jimmy Lin (RGI/RareShare)

08/17/2018
LGLL Podcast Session II (11/24/2015)

Featuring Dr Thomas Loughran (UVA, Virginia), Dr Lubomir Sokol (Moffitt Cancer Center, Florida) and Dr Jimmy Lin (RG/RareShare)

08/17/2018
LGLL Podcast Series III (3/25/2016)

Featuring Dr. Thomas Loughran (UVA, Virginia) and Dr. Bogdan Dumitriu (NIH, Bethesda, Maryland).

08/17/2018
LGLL Ask The Experts Podcast Session IV

Featuring Dr. Thomas Loughran (UVA, Virginia) answering community questions about Large Granular Lymphocytic Leukemia (Music credit:www.bensound.com)

08/17/2018
Community External News Link
Title Date Link
Community Resources
Title Description Date Link
Analysis of a French cohort of patients with large granular lymphocyte leukemia: a report on 229 cases

2010 article from French researchers, comparing several other research studies.

 

Published online in peer-reviewed Haematologica Journal in April 2010.

03/20/2017
How I treat LGL leukemia

Just like the title says, Dr. Lamy from France, and Dr Laughran, from Penn State Hershey Cancer Institute , describe how they treat the LGL leukemia diseases. It also covers diagnosis, pathophysiology, clinical features, outcome, when they start therapy, treatment response, a review of the treatments, It is interesting in many ways, but especially how they differ slightly in their basic treatment recommendations.

03/20/2017
Finnish researchers discover cause of LGL leukemia

Great new research on a cause for LGL leukemia, and at least a start for new and better medication. It sounds like some of the US registry blood was used for the study.

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Discussion Forum

Side effects of immunosuppressive drug

Created by sybaten | Last updated 22 Sep 2017, 01:03 AM

Unexpected complete remission from synthetic cannabinoid

Created by J_Doe | Last updated 30 Aug 2016, 02:57 PM

NEW LGL Leukemia Program at UVA!

Created by tinacancio | Last updated 30 Aug 2016, 04:23 AM

Thank you : RareShare/RGI LGLL Podcast II -11/24/2015

Created by deepask1 | Last updated 25 Nov 2015, 03:51 PM

RareShare/RGI LGLL Podcast Invitation-Series II

Created by deepask1 | Last updated 18 Nov 2015, 03:40 PM

raising Funding on National Level for research

Created by Kat1234 | Last updated 8 Jun 2015, 07:15 PM

LGL Bone a Marrow Transplant

Created by Kat1234 | Last updated 6 Jun 2015, 03:38 PM

raising Funding on National Level for research

Created by Kat1234 | Last updated 5 Jun 2015, 12:37 PM


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