T-Cell LGL

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T-Cell LGL

by Deirdres on Wed Jul 07, 2010 06:39 AM

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My Husband is 38 and was diagnosed with t-cell LGL and we have seen 3 different doctors including traveling to the Mayo clinic. We have been hearing that there is no cure for this cancer but there are some treatments that help it. Does anyone have any good info on this cancer. Also has anyone been told the cause of this cancer? My husband grew up in a town where the water was found to be contaminated.

Thanks for any information you have in advance.

Deirdre S.

 

RE: T-Cell LGL

by bctrissel on Wed Jul 07, 2010 07:28 PM

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Hello Deirdre,

I am a 54 yr old woman in the Harrisonburg VA area recently diagnosed with t-cell LGL.  I am fortunate that the hematologist my gp sent me to for undiagnosed anemia knew exactly what to test me for based on my blood work.  He did a bone marrow biopsy to confirm and seems very knowledgeable.  He said possibly the cause for t-cell LGL is related to something wrong with with a gene as I understood it.  My condition improved after he took me off of several prescription meds that lower blood levels.  I also have been taking olive leaf extract --that I got from Olivus an online company--after reading that suggestion on this message board and the olive leaf seems to give me more energy, along with toQ10 and vitamin C, also mentioned in that message. I take it twice a day. My doctor is not a big fan of herbal treatments/supplements but as long as they're harmless he's not opposed to my taking them at this stage in my illness.  I am considered low grade and being closely monitored.  Meanwhile, I recently read a report from the Mayo Clinic about green tea (in phase two clinical trials) being used to slow or check the progression of chronic leukemia.  So I've added freshly brewed regular(not decaff) green tea to my daily regimen in an effort to avoid or delay the potentially toxic meds used to treat the more advanced stage of this form of leukemia.  Again, my hematologist said OK to try but he's not advocating it and added that once the treatments are begun green tea can interfere with their effectiveness and at that point must be discontinued, but I'm hoping not to get to that point.  So far I've noted that with four large cups of green tea a day my eye twitches far less from fatigue and my neck ache is diminished, also a fatigue thing.  So it and the other supplements mentioned above plus a healthy diet and moderate exercise are my daily efforts. My blood levels are holding but it's early days yet to proclaim that I am on the right track, but I hope so and will report back.  I hope this may help your husband. If you decide to try the green teajust be sure he's not on a med that this might interfere with.  Brew the water to just below boiling as boiling is too hot and will destroy some of the benefits and then steep for 3 minutes.

RE: T-Cell LGL

by ddixon on Thu Jul 08, 2010 04:48 PM

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hi Deirdre, I did a total double take when I saw your post.  My name is also Deirdre, and my 35 year old husband was diagnosed a few months ago with LGL leukemia!

the word leukemia is so scary, but it turns out this form is very un-serious (because it doesn't have a mortality rate and doesn't require such dramatic treatment as most of the leukemias you hear about).  I was having a lot of trouble finding information about this disease at first as well, which only added to our stress.  I started a community on rareshare.org for LGL leukemia, and we now have 25 members, many of them younger like our husbands (especially interesting since this rare disease is "typically" diagnosed in people in their 60's).  There is a lot of information re: symptoms, treatment experiences, etc. on that website, but CancerCompass doesn't like me to post the direct link so google for "large granular lymphocytic leukemia" if you are interested.

My husband is suspicious that working on the corroded sewer pipes under our house triggered his disease. He developed symptoms and was diagnosed with Rheumatoid Arthritis within a month of cutting his hand on that project, but there is of course no way to know.

Deirdre D.

RE: T-Cell LGL

by Max_and_Linda on Fri Jul 09, 2010 10:40 PM

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Dear Deirdre - Hi, my husband also has that diagnosis.  He was diagnosed almost three years ago but probably had it for a few years before diagnosis.  We know one other man with the same diagnosis.  The first course of treatment was prednisone which kept his red count up but did nothing for his low white counts.  Second we tried methotrexate + prednisone.  That resulted in transfusion dependent anemia.  Last summer he was put on low dose cytoxin with shots of procrit and neuprogen weekly.  After a year his counts remain at manageable levels and he feels fine.  We feel fortunate he is doing so well as I know others don't fare as well.  As far as I know there is not a "cure" but the disease is manageable and who knows what the future holds.  For the last month his hemaglobin has remained at a high enough level he is not getting the procrit shot.  We are encouraged.  I do know of one man who achieved complete remission with high dose cytoxin but I don't think that is the preferred treatment at this time.  They are doing a lot of research in the area of rheumatoid arthritis that may have a direct bearing on this disease as well.  You will get a lot of information on this website so keep looking.  Also put in an "alert" with google and they will automatically e-mail anything that shows up on the internet on t-cell LGL

As far as cause is concerned I don't think anyone knows much.  Exposure to something toxic?  don't know.  There does seem to be an abnormality at one of the gene sites and research is being done there.  Good luck to you both.  Linda

RE: T-Cell LGL

by longbow on Sun Jul 18, 2010 08:25 PM

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Hi, I am glad to hear about someone using olive leaf.  When I started using it five years ago, the first thing that I experenced was more energy. I remember staying up later at night and was suprized because I always had to lay down early. I still take my olive leaf extract, vitamin C, and CoQ10. When I had LGL I would take 1500 mg or more, up to 3500 mg of olive leaf. remember the Coq10 and C is very important also. I take 3000 mg of C and 100 to 200 mg of CoQ10 every day now. I was only sick with a normal virus twice this past year. I was diagnosed lgl in 1994 and in 2005 it was benign. God bless, Longbow

RE: T-Cell LGL

by bctrissel on Sun Jul 18, 2010 08:53 PM

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Thanks so much for your very helpful advice.  Will do!

RE: T-Cell LGL

by brief on Wed Nov 10, 2010 08:13 AM

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On Jul 09, 2010 10:40 PM Max_and_Linda wrote:

Dear Deirdre - Hi, my husband also has that diagnosis.  He was diagnosed almost three years ago but probably had it for a few years before diagnosis.  We know one other man with the same diagnosis.  The first course of treatment was prednisone which kept his red count up but did nothing for his low white counts.  Second we tried methotrexate + prednisone.  That resulted in transfusion dependent anemia.  Last summer he was put on low dose cytoxin with shots of procrit and neuprogen weekly.  After a year his counts remain at manageable levels and he feels fine.  We feel fortunate he is doing so well as I know others don't fare as well.  As far as I know there is not a "cure" but the disease is manageable and who knows what the future holds.  For the last month his hemaglobin has remained at a high enough level he is not getting the procrit shot.  We are encouraged.  I do know of one man who achieved complete remission with high dose cytoxin but I don't think that is the preferred treatment at this time.  They are doing a lot of research in the area of rheumatoid arthritis that may have a direct bearing on this disease as well.  You will get a lot of information on this website so keep looking.  Also put in an "alert" with google and they will automatically e-mail anything that shows up on the internet on t-cell LGL

As far as cause is concerned I don't think anyone knows much.  Exposure to something toxic?  don't know.  There does seem to be an abnormality at one of the gene sites and research is being done there.  Good luck to you both.  Linda

What is procrit shots?

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