Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

Latest post 11-09-2013 8:16 AM by binaghimire. 28 replies.
  • 05-27-2009 6:23 PM

    Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

    I am 31 years old with chronic t-cell large granular lymphocytic leukemia and was just wondering if anyone else has the same or something similiar, just wanted to touch base...Thanks, Michelle

  • 08-20-2009 5:57 PM In reply to

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

     Hi Michelle,

    I too was just diagnosed with the same thing. For 1 year my GP has been following my CBC's, without any symptoms, and offering no explanations as to why the low WBC. I finally went to a hemotologist that gave me the diagnosis. I am absolutely healthy, and from everything I read, that unless you exhibit some symptoms, they won't treat you. The irony of this is that my husband, 13 years ago was diagnosed with Chronic Mylogenous leukemia. What are the odds that I too would be diagnosed with leukemia. I do plan to go for another opinion, most probaby to MD Anderson, in Texas, which is where my husband goes once a year to be followed. I now live in Florida, am 52, and in great health. I workout all the time, and maintain a very healthy life style. I am nothing but optomistic about my prognosis. Please let me know how you are and what you are planning to do. Feel free to e-mail me at carensellshomes@aol.com. I look forward to hearing from you.

    Regards,

    Caren

  • 09-17-2009 7:44 PM In reply to

    • DonD
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    • Joined on 09-17-2009
    • Posts 1

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

    Hi, I was diagnosed via an immunopheno spin down in 2004.  Oncologist thinks it started about 2000. 

    I haven't had any noticeable symptoms other than I had a significant drop in aerobic performance about the time the doctor thinks it occurred.  My running endurance dropped off considerably.  Strength has not been affected, I lift a lot of weight in the gym w/o issues.

    My blood values had been pretty stable for the past nearly 5 yrs.  They did another spin down this summer and the test results are noticeably better but not enough that the diagnosis has changed. 

    I haven't been given any medication and the oncologist said I won't unless things worse dramatically.  Methotrexate is one of the main meds.  Doctor thinks I will motor along as I am and doesn't expect it to worsen.

    One of the problems if you call it that is that this disease is a rare form of leukemia and they don't have enough patients in a single area to do much of a valid study.

    My impression and it is just that, an impression, from what I have read is that this T-cell LGL is pretty rough on young kids and perhaps teenagers but far less so on older folks and the older perhaps better.  I'm 62, maybe something good about getting older?  As the other poster said, feel free to email me at DONALDM86@msn.com if you desire more commentary from me.

    Best wishes to you.  Don

  • 10-23-2009 5:21 AM In reply to

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

     Dear Michelle,

    It has not been 24 hours since I received a diagnosis of Chronic Lymphocytic Leukemia.

    I am still in shock.

    Regards, Wlad

  • 10-23-2009 6:02 AM In reply to

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

    I am so sorry to hear that-if you would like to talk my email is sarasotap@comcast.net. 

    I was in shock too! I am 31 so this was an odd diagnosis for someone my age. Your symptoms will of course determine if you start treatment or not.

    Feel free to email me at sarasotap@comcast.net if you would like to discuss anything!

  • 03-22-2010 5:24 PM In reply to

    • ddixon
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    • Joined on 03-22-2010
    • Posts 1

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

    hi Wlad,

    my husband and I just found this thread today.  Do you have large granular lymphocytic leukemia or chronic lymphocytic leukemia?  My husband was diagnosed with LGL leukemia (at age 34) in the fall and we've been able to find very little information about it.  we also haven't found too many people who have it, but I created a group on rareshare.org and have heard from one person so far: http://www.rareshare.org/communities/large-granular-lymphocytic-leukemia/topics.  I know it's a nuisance to sign up for lots of websites, but it would be great to form a little community.  I'm trying to e-mail anyone I come across with LGL leukemia whose address is listed.

    I saw you wrote one other post looking for support groups in PA and Southern California?  We're in LA, so would be interesting to hear your experience in the area.

    Deirdre

  • 03-22-2010 6:25 PM In reply to

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

    Hi Deirdre-

    My name is Michelle-I also posted under this thread and couldn't beleive there was another person in their thirties with LGL. I have Chronic T-Cell large granular lymphocytic leukemia-I was diagnosed last May 12th -I first started prednisone treatment and I have been on it for about a year. I am still not responding so we have added chemo-oral-methotraxate-I take it every Friday and have been on it for a couple of months with still no improvements. We are talking about upping the chemo-I have to get off these steriods because of all the side effects...

    What are they doing for your husband? Is he experciencing symptoms? I had-took almost a year for them to figure out what was goine on! Would love to hear from you-your husband is the first person in their 30's that I have come across-most likely you already know this is a leukemia that is found in people in their 60's...

     

  • 05-17-2010 12:00 AM In reply to

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

     Good evening all,

     

    I am 34 yrs old and have felt soo bad for almost 4 yrs with no explanation other than chronic inflammation and autoimmune problem...... I have not been diagnosed yet but after so many years of bone marrow biopsies and so many times being frustrated with my Oncologist and after getting a 2nd opinion they both together have decided after my 3rd biopsy and that the pathologist review states that I might have T-Cell Large Granular Lyphocytic Leukemia more tests need to be done......... I am sooooo tired of all my sypmtoms and sooo ready for something to be done......Thank GOD THEY ARE SENDING ME TO "MAYO CLINIC" so someone can help or maybe not...... is this type curable?

  • 05-29-2010 6:44 PM In reply to

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

     Dear Diedre,

    I am sorry I have taken so long to get back to you.  When in CA I reside in Studio City, My Office is in Oxnard Ventura County.  I am currently in my PA office.

    In addition to my CLL diagnosis I have been involved in three motor vehicle accidents in 9 months, and to make matters worse my eldest lost his left leg in a railroading accident.  Sheesh I hope things improve soon.

  • 09-26-2010 12:05 PM In reply to

    • Pachez
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    • Joined on 09-26-2010
    • Posts 1

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

     

    Hi,

    Penn State University in Hershey, Pennsylvania, has received a grant for study of LGL.  At the present time they are in the process of building a data base of patients with it.  You can go directly to the hospital there for diagnosis/treatment or they will work through your current doctor if the distance is too far.  In my case they are working through the medical staff of Elllis Fischel Cancer Center in Columbia, Missouri.  If anyone is interested in information about this, I can give you contact information. 

    bellebar1932@yahoo.com

    Bertha

     

     

  • 10-18-2010 6:45 PM In reply to

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

    My mom was 46 when she was diagnosed with Large Granular T-Cell Leukemia.  We took her to see a physician in NY who specializes in this particular type of cancer.  She started my mom on Cyclosporin (at that time it was an off label use of that medication).  Nobody here in PGH ever heard of this disease or had any idea how to treat it.  We  were fortunate enough to find a physician in NY who was doing research on this type of cancer.  My mom is now 65 and i sjust starting to have problems with her medication not working and her neutrophil count is basically gone at this time.  We will be taking her back to the original doctor who basically saved my mom's life, in November.  She now is head of oncology at University of MD.  It is still a rare disease that the docs don't seem to know much about.  Have faith.  If you would like this doctors name and info I would be more than happy to share it.

     

    When my mom was diagnosed she was very ill, constant infections and low blood counts.  We were told that she should get her things in order and that an infection would probably kill her and that they didn't expect her to live more than 6 months....well, she survived almost 17 years and was doing well all this time.  We are very optomistic that this specialist will have an idea of how to bring up her counts and give her another 16 years.  

     

    We didn't settle for what one doctor told her, we kept researching until we found someone who could help her.  Don't give up, keep getting info and second, third, fourth opinions until you feel comfortable with what they are telling you.

     

    Anyone who would like info on this doctor we are going back to see, please feel free to email me.  I cant say that she can help, only that in our case she was a lifesaver and gave us hope for my mom.

     

    Good luck!

    Michelle

     

  • 11-15-2010 2:08 PM In reply to

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

    Michelle & any others with this diagnosis-

    I was diagnosed with T-Cell Large Granular Lymphocyte Leukemia less than one month ago (October 2010), as a matter of fact 1 day after I turned 30 year old.  I am still in shock & feel very confused by my diagnosis.  I have an appointment next Monday with my hematologist for a follow-up meeting.  At this point we will not be treating this disease, as the doctor feels it is not causing my body harm.  I was diagnosed with Neutropenia when I was 21 years old, but never had a bone marrow biopsy until August of this year.  They know for a fact I have had this disease since 2001 & believe I may have had this for most of my life.

    What are some questions I should be asking the doctors?  How many of you are being treated?  Are there others with a young diagnosis?  Do you have suggestions on experts for this type of leukemia?

    My email is kltumminello@yahoo.com if any of you have information you would be willing to share with me.

     

    Thank you,

    Kerri

  • 03-24-2011 8:18 PM In reply to

    • etaber
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    • Joined on 03-24-2011
    • Posts 1

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

     Bone marrow is not the way to dx TLGL  tragic that they subjected you to three

    The dx is made with  T cell flow cytometry and T cell receptor studies. 

    Treatment is with various meds eg methotrexate, pentostatin, alemtuzumab among others. The mayo docs can help sort it out if you needed to be treated

    Good luck

    From fellow member of the dx as a  Young person TLGL club  ( dx  age 41 prob had since age 35 )

    ET  

  • 03-27-2011 5:05 PM In reply to

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

     

  • 03-27-2011 5:08 PM In reply to

    Re: Chronic T-Cell Large Granular Lymphocytic Leukemia-LGL

    Pachez:

     

    Hi,

    Penn State University in Hershey, Pennsylvania, has received a grant for study of LGL.  At the present time they are in the process of building a data base of patients with it.  You can go directly to the hospital there for diagnosis/treatment or they will work through your current doctor if the distance is too far.  In my case they are working through the medical staff of Elllis Fischel Cancer Center in Columbia, Missouri.  If anyone is interested in information about this, I can give you contact information. 

    bellebar1932@yahoo.com

    Bertha

     

     

     

     

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