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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.

 

 

UX TESTERS NEEDED: HelpAround Specialty Patient App Created by krystalqle
Last updated 10 Jun 2020, 04:53 PM

Posted by krystalqle
10 Jun 2020, 04:53 PM

Hi! My name is Krystal, and I am part of HelpAround, a digital health startup that's building a mobile platform for specialty patients. The app is designed to help chronic/rare disease patients manage their specialty treatments by providing them with the necessary logistical, educational and community support. 

We're looking for patients who are willing to give us feedback on our prototype(s), so that we can improve our user experience. If you're interested, the details are below:

  • User Demographic: Any patient who is currently taking (or have taken) specialty meds (now or in the past)
  • Goal: Understand which app feature(s) are/aren't user-friendly (we want your honest feedback!)
  • Duration: 1 hour (each session will consist of a series of defined tasks)
  • Platform: Zoom

We would love to hear your opinions and see how we can help improve the patient journey for those with rare diseases. If you are at all interested, please feel free to email me at krystalle@helparound.cc, or respond below. Thank you so much!

Cyclosporine Created by Ashleycarter0891
Last updated 5 May 2020, 01:08 PM

Posted by Ashleycarter0891
5 May 2020, 01:08 PM

Has anyone had a jaundice reaction to cyclosporine?

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!

Community News Articles
Default article

LGLL Podcast Series-02/13/15

Publication date: 13 Feb 2015

Community: Large Granular Lymphocytic Leukemia

Podcast

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


Default article

LGLL Podcast Session II (11/24/2015)

Publication date: 11 Nov 2015

Community: Large Granular Lymphocytic Leukemia

Podcast

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


Default article

LGLL Podcast Series III (3/25/2016)

Publication date: 25 Mar 2016

Community: Large Granular Lymphocytic Leukemia

Podcast

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


Default article

LGLL Ask The Experts Podcast Session IV

Publication date: 18 Nov 2016

Community: Large Granular Lymphocytic Leukemia

Podcast

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


Lgll ebook

LGLL Diagnoses, Therapies and Hope (Rare Genomics Institute & RareShare)

Publication date: 27 Feb 2017

Community: Large Granular Lymphocytic Leukemia

E-Book

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. 


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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Community User List

Struggled with finding out what is wrong with me for 5 years then finally yesterday we got answers. LGL is not what I was hoping for I hoped this would eventually just go away and I could live a...

Yad

Need info on LGL leukemia support group 

DK

I was diagosed with T-Cell LGLL  in 2017 and this last year has been my best year yet (if you can say a best year, I know!) being on oral Cyclophosphamide at 50 mg. I have tried all the other...

Male, 45 years old.  Diagnosed with LGLL.  In Wait and Watch.  

t-cell large granular lymphocytic leukemia

  I was diagnosed with T-LGL leukemia and MGUS in Feb.2016. Symptoms are pancytopenia, neutropenia, splenomegaly and fatigue. I don't have RA, recurrent infection, fever, night...

Caregiver. Husband diagnosed with LGLL in August, 2016.
On July 26, 2016 I was diagnosed with a rare form of blood cancer called Chronic T-Cell LGL (Large Granular Lymphocyte) Leukemia. Approx. 1,000 new cases are diagnosed each year in the US. I also...
I am a volunteer podcast organizer for RareShare.
I have both LGL Leukemia and Arrhythmogenic Right Ventricular Dysplsia/Cardiomyopathy (ARVD/C).
My Husband has LGL T-Cell Leukemia and I am looking for information to use for questions during our second opinion.
My condition is T-cell Large granular lymphocyte leukemia
Diagnosed with LGLL 5th January 2015, have a neutrophil count of 0.0 so currently being treated with cyclosporine dose 150mg twice a day.
New to the group
I was diagnosed with T cell LGL last summer (2014)
I am the wife and care giver of an lgll patient who has been through a lot of medical issues in the past 17 years. Pure red cell aplasia ( PRCA ) with a thymoma removed in 1998. Went 10 years with...

have RA for 28 years

 

LGLL march of 2012

 

treatment at Loyola Maywood/Chicago Illinois

 

cyclophosphamide oral 9 months

 

 

as of; 8-17-2016 off meds /  cells...

I was diagnosed with T-Cell LGL in April 2014, quite by accident when my primary doctor ordered a biopsy of my blood because of high MCV. That's when they found the leukocytic leukemia. After...
I am a 68 year old female artist of Polish/Ukrainian descent. I came to the U.S. In 1955

 

I am a naturalized citizen and live on Staten Island with my husband off 44 years John Fiore. We have...
AGE 61, MARRIED TO A WONDERFUL MAN, TONY, 3 GROWN UP CHILDREN, RUSSELL, VICKY AND MANDY AND 1 GORGEOUS GRANDDAUGHTER ROBYN MARIE.

 

 

DIAGNOSED WITH LGLL IN APRIL 2014. ALSO HAVE HAD...
64 Y.O. retired Fire Fighter, Vietnam vet and recently diagnosed

 

with NK/T-LGL.
Diagnosed barely 3 years ago at UCLA by Dr. Ron Paquette. It was missed at my home facility. I have been treated with cyclosporine, starting at 400 mg/day, for 6 months. I developed mixed...
Program Manager, Scientific Programs, RareShare
Diagnosed with T-Cell Large Granular Lymphocytic Leukemia on 6 August 2014 at age 46
Retired grandfather, married

 

Diabetes

 

 

LGL
Kinglyvelvet provide health benefits ranging from aiding arthritis to easing psoriasis and almost everything in-between, deer velvet could be right for you.
53 yr old female recently diagnosed with T Cell granular lymphocytic-leukemia
I am 50 years old and was diagnosed about 9 months ago. I serve a s a Pastor at Faith Ev. Free Church of Sparta, wi.
Diagnosed with T-cell LGL January 2013 after 11/2012 blood work raised some flags for my regular GP. Oncologist now says T-cell LGL with Neutropenia and in a 'watchful waiting' mode. This is...
I have LGL Leukemia and RA and am hoping to talk with people with the same condition.
Here to support
Diagnosed with LGL in 2012 after repeated infections

 

With neutrophils <0.5 I trialed methotrexate for six months

 

with little improvement. I am now on twice weekly GCSF

 

and no immuno suppressant drugs. I have a 2 year old...
I am 67 and was diagnosed with LGL in March 2011.
Retired MD internist, diagnosed last summer with tcell LGL leukemia, confirmed by bone marrow 1/13; with over 1000 neutrophils so no treatment now. Have done some research of medical literature so...
I'm a 39 year old male diagnosed with T-Cell LGL as of May '12.

 

 

Prior to that, I was diagnosed with Cyclic Neutropenia ('01) and managed it well with initially Neupogen (weekly) and...
I am 36 years old and have suffered the past 3 years with "strange" symptoms that all seem to have culminated in T-Cell LGL Leukemia. I had a bone marrow biopsy this morning to confirm the...
I am 39 yrs old and just freshly diagnosed yesterday 12-28-12 with LGL.
I was diagnosed with LGL Leukemia three years ago. My blood levels have been stable for two years. Three years ago the doctor tried an oral dose of methotrexate which did not help. I am having...
Searching for answers for a friend
Sister has just today been diagnosed with LGL (October 5, 2012) and I'm at the beginning stage of trying to find out information about this type of leukemia.
Recently diagnosed, living in Melbourne Australia, Married with two young sons aged 8 and 5
I AM 56 YEARS OLD. I WAS DX WITH LGL LEUKEMIA, IN 1972 I WAS LIVING AT CAMP LEJUENE, N.C., I WAS EXPOSED TO CONTAMINATED WATERS, I THINK THIS IS HOW I GOT LGL I CAN'T THINK OF ANY OTHER WAY. DOES...
I am a close friend of someone with LGL Leukemia and want to learn all I can about this Cancer so I can better help her.
Recent diagnosis after 2 years Tx with Neupogen for unexplained neutropenia.
diagnosed with LGL Leukemia April 2012. I am 37 years old and mother of two.
I am a cancer survivor; B-cell, Non-Hodgkins Lymphoma. My brother seems to have LGL and I am having trouble finding out about it. Hopefully, there are some answers here.
I was Diagnosed with Aplastic Anemia (Bone Marrow Failure Disease) in May 2010 and T-Cell LGL Leukemia in May 2011. I am since retired on disability and am now a professional patient. I am being...
dad diagnosed w/lgl looking for help support
I was diagnosed in 2011 due to abnormal blood scores during a pre-op exam.
father was diagnosed with lgl in may searching for any info out there
Retired child care worker, married. Enjoy traveling in our motor home.
Diagnosed with T-Cell LGL in November 2011 @ 31 years old. Currently on watch and wait.
diagnosed with lgll in Oct 2011
47 yo male from Istanbul. Suspected dx - LGLL from february 2010. Now on "wait and watch" stage.
I am 47 years old. I was diagnosed in August 2010 with T-Cell (LGL) Leukemia.
I am 32 years old and from Northwest Ohio. I was diagnosed with T-Cell LGL in August of 2011. I am currently asymptomatic, and am just being watched at the moment. I feel pretty clueless about the...
this concerns my son, who had this disease for years.

 

He is presently struggling with a very severe allergy, mucus,coughing,weight loss,no apitite. Have any of you had this?
I was diagnosed with T-Cell Large Granular Lymphocytic Leukaemia (T-LGL) on 2 June 2011.

 

It was initially found accidently during a routine blood test on 2 April 2011.

 

I have 2...
Blood test and bone narrow showed LGL in Jan. 2011. I have been getting a blood test and a shot of 500mg Darbepoetin Solution (Aranesp) every 2 wks. and I've had 1 transfuesion. HGB runs in the 9...
I have a friend with LGL Leukemia and too many other friends with tough diseases. Looking around for some help for them and to get more informed.
Just diagnosed with large granular lymphotocytic leukemia in the past week and am trying to find out more about it. I am a male, 64 years old and am told that this disease is usually diagnosed in...
I am 64 yrs old and was diagnosed with nk lgl leukemia 3 yrs ago. I have been in Dr T Loughran's study since that time. I go to Hoag cancer center for a draw every 2 months and my anc is between...
My husband has lgl leukemia. So far it is untreated, but his red cell count is getting lower. He is looking to be treated at Hershey Medical Center. He was diagnosed in 2008.
My father has been diagnoised with T-Cell LGL. My daughter also has Spina Bifida and everyhting that goes with that. Im looking for info for my father at this time. He was dianoised Nov 2010. In...
I have had lgl for about 2 years. I have had low white counts. I am taking 15 mlg of methotrexdate once weekly. I feel good most of time. I am praying for a cure.I also thankful it is not a lot...
Spouse to a 65 yo lady with LGL Leukemia.
I am a 46 year old women that was diagnosed with LGL in May of 2009 and RA in July of 2010. My symptoms started with extreme fatigue and lots of sinus infections, respitory infections and the flu....
I was diagnosed with LGL 2 years ago...
Was diagnosed in July 2009 - have had no success with prednisone, methotrexate, cyclosporine and now I am on cytoxan - hoping for the best.

 

I live in Minnesota, and I am being treated at The...
French female, 63 years old, diagnosed since 4 years and indolent, asymptomatic until nomw
I am a 63 year old female, two years retired. I have had rhuematoid arthritis for 37 years and was diagnosed with large cell leucyte leukemia three years ago.I am on 10 mg daily of tacrolimus...
Hi, I've been diagnoised with LGL. I'm 39. Trying to find out more about it.

 

 

Jo
My name is Constance. I live in Colorado in the United States. I am 42, and I have 4 children 26, 23, 18, and 5. I was diagnosed with LGLL in January 2007. I am W/W with no symptoms and normal labs...
Just got diagnosed with LGL Leukemia and looking for more information. I live in Austin with my two beautiful kids and my beautiful wife
Diagnosed with T-large granular lymphocytic leukemia
My mother has LGL Leukemia.
A patient with t cell large granular lymphocytic luekemia and rheumatoid arthiritis
not too much to tell

 

I am doing research for someone else that has

 

this rare form of Granular Large Leukemia
my husband has been diagnosed with lgl he has tried methotrexate and ciclosporin and neither worked so he is now having a six week course of chemotherapy iv with cladibrine

 

I'm a 36 yo male and was diagnosed with LGL in 07/10. I have had this condition for at least 8 years but it was just diagnosed.
I am 28 yrs old. My mom was diagnosed a year ago with T Cell Large Granuler Lymphnotic Leukemia. She was seeing some docs for a year at U of M and now they are weening her off those meds so she can...
Was diagnosed with T-LGL leukemia a month ago after a year of various infections and severe neutropenia. Am on a regimen of cyclosporine(modified) under the care of MD Anderson Cancer Center. The...
Best friend's son just diagnosis with LGL. She lives up in Vancouver Canada, I'm in California. I want to offer her any and all the support I can by educating myself regarding this type of cancer....
I was dx 5/04 but could trace back to having LGL in my 30's. Did a trial with Loughran of Prednisone and Methotrexate (trial was for 4 months, I did 7 months) with no results. I also took Plaquenil...
My 24 year old son was diagnosed with T Cell Large Granular Lymphocyte Chronic Leukemia in June 2010.

 

It is a huge shock for us all and I have stumbled across this forum via csn.org. We are...
Diagnosed with T- cell LGL leukemia 5/05

 

My Name is Christian, Husband to a wonderful wife and a father of the joy of my life. I have been ill for about 4yrs, a steady cough for 2 years, weight goes up and down but mostly up (gained 25lbs...
I'm 40 and was diagnosed with Chronic T-Cell LGL two years ago.
I'm 57 years old and I have been diagnosed with t-cell LGL Neutropenia in 2000. Medication on now is Methotrexate 10mg a week. Have had Neulasta shots many times and it works very effectively. Have...
Looking for info about T-cell LGLL for my recently-diagnosed mother.
I live in Los Angeles, am somewhat healthy but have had strange health issues, skin infections, fatigue to the point of not being able to exercise as much, joint pain, weight gain, had cataract...
My daughter who is now 20 yrs old, was diagnosed with LGL in Dec 2008.She is not on any meds yet. Thank-you to whoever started this site, it is very helpful and uplifting.

 

Keep the faith!!...
I am a happily married father of four beautiful children. I was diagnosed with LGL Leukemia in February 09. I've since gone through 6 months of chemo meds with mild success and minimal side effects...
My name is Michelle and I live in NH. Last May on the 12th I was diagnosed with LGL. I am still working part-time and going to school for my masters. I am currently undergoing treatment for my...
my husband was diagnosed a few months ago at age 34 with Rheumatoid Arthritis, then Felty's Syndrome, then Large Granular Lymphocytic Leukemia. The LGL leukemia is the reason I came looking on this...

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Discussion Forum

UX TESTERS NEEDED: HelpAround Specialty Patient App

Created by krystalqle | Last updated 10 Jun 2020, 04:53 PM

Cyclosporine

Created by Ashleycarter0891 | Last updated 5 May 2020, 01:08 PM

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


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