T-cell LGL Lmphocytic Leukemia.

Hello, I am a 38 year old husband and father of three and have been recently diagnosed with T-Cell LGL Lymphocytic Leukimia. I have an initial appointment scheduled at the Dana-Farber Cancer Institute next week and would like to hear from someone that might know what I should expect. Any input would be greatly appreciated

 

Hi Jerry.

I  have no idea wat u can expect  but I just wana wish u all the best. Stay positive and remember that all happens for a reason and wateva brings u down use it as an instrument to pull u up, so that u may have a testimony for those who will be in ur position in the future. Most importantly show ur boys that life brings u the unexpected but u must react in a way that is also unexpected that is to be in a fighting spirit. x

 Let us know how u get on...x

 

On 2/21/2009 ladyd wrote:

 

Hi Jerry.

I  have no idea wat u can expect  but I just wana wish u all the best. Stay positive and remember that all happens for a reason and wateva brings u down use it as an instrument to pull u up, so that u may have a testimony for those who will be in ur position in the future. Most importantly show ur boys that life brings u the unexpected but u must react in a way that is also unexpected that is to be in a fighting spirit. x

 Let us know how u get on...x

Thank you for the kind words............

 

On 2/21/2009 Jerry_M wrote:

Hello, I am a 38 year old husband and father of three and have been recently diagnosed with T-Cell LGL Lymphocytic Leukimia. I have an initial appointment scheduled at the Dana-Farber Cancer Institute next week and would like to hear from someone that might know what I should expect. Any input would be greatly appreciated

Hi Jerry, I was diagnosed with T-cell LGL 7 years ago. I am 57 years old. After the shock wears off and you research and begin to understand as much as you can find on this rare type, look for ways to help your immune system and your peace of mind. I am on Cyclosporin daily with vitamins and healthy food. I have problems with sinus infections and various aches & pains. I have to keep up with labs because my platlet count can drop fast. Tylenol is the only pain reliever I am allowed but, it compromises the liver.I don't get enough exercise because I get very tired.  I have had 5 bone marrow biopsys and aspirations, most of them for the stem cell research. I went to three cancer hospitals before I was diagnosed. I go to M.D. Anderson once or twice a year & us an oncologist locally. Jerry, if you have a good agressive doctor that will keep up with your labs and overall well being, you will be fine. If I can be of any kind of help, don't hesitate to contact me. One day soon, there will be a cure.

 

On 2/24/2009 sewpoke wrote:

 

On 2/21/2009 Jerry_M wrote:

Hello, I am a 38 year old husband and father of three and have been recently diagnosed with T-Cell LGL Lymphocytic Leukimia. I have an initial appointment scheduled at the Dana-Farber Cancer Institute next week and would like to hear from someone that might know what I should expect. Any input would be greatly appreciated

Hi Jerry, I was diagnosed with T-cell LGL 7 years ago. I am 57 years old. After the shock wears off and you research and begin to understand as much as you can find on this rare type, look for ways to help your immune system and your peace of mind. I am on Cyclosporin daily with vitamins and healthy food. I have problems with sinus infections and various aches & pains. I have to keep up with labs because my platlet count can drop fast. Tylenol is the only pain reliever I am allowed but, it compromises the liver.I don't get enough exercise because I get very tired.  I have had 5 bone marrow biopsys and aspirations, most of them for the stem cell research. I went to three cancer hospitals before I was diagnosed. I go to M.D. Anderson once or twice a year & us an oncologist locally. Jerry, if you have a good agressive doctor that will keep up with your labs and overall well being, you will be fine. If I can be of any kind of help, don't hesitate to contact me. One day soon, there will be a cure.

 

Thank you so much for sharing your experience and knowledge. This is very encouraging and I hope that 7 years from now that I'm doing half as well as it seems you are and that I'm able to share with someone else that may be in need. I'll be sure to keep you posted. Again, thanks so much!

I am 65 and was diagnosed 8 years ago. up until a couple of years ago I was pretty much without symptoms, other that sinus infections.  I ended up  in the hospital a couple of times for respiratory problems, related to colds.  A couple of years ago I started experiencing severe muscle weakness, which the doctors think might be related to the leukemia.  So far they haven't found anything to help.  I would be interested in knowing whether anyone else has experienced muscle problems.  My doctors have told me this disease progress slowly and that you usually don't die from it but with it..  So far thats been the case with me. 

Dear Sir,

I'm not so sure that I can help as my son's diagnosis is T-cell Acute Lymphocytic Leukemia, a little different than yours. I know what he has gone through since his diagnosis June 10th, 2008 and I know "T-cell" put him in the small 10th percentile of ALL patients as T cell is much more agressive than B cell. I also know that I was told children do much better with surviving cancer because their bodies are not as beat up as ours, but also because they don't really understand "cancer". They just know they don't feel good. I guess what I'm trying to say is "mind over matter". You must BELIEVE and fight this. I've met many cancer survivors since my son started treatments and I expect you to be one of them! Especially when you have children. God is good. ALL the time! Hold on to that. Whatever HE leads you to, He will bring you through. I have found alot of helpful information from the Leukemia/Lymphoma Society and www.carepages.com. is a patient website. I pray the Lord show you His presence in your life today and may you know that you are not alone. Crystal 

 

 

On 3/11/2009 crystal1 wrote:

Dear Sir,

I'm not so sure that I can help as my son's diagnosis is T-cell Acute Lymphocytic Leukemia, a little different than yours. I know what he has gone through since his diagnosis June 10th, 2008 and I know "T-cell" put him in the small 10th percentile of ALL patients as T cell is much more agressive than B cell. I also know that I was told children do much better with surviving cancer because their bodies are not as beat up as ours, but also because they don't really understand "cancer". They just know they don't feel good. I guess what I'm trying to say is "mind over matter". You must BELIEVE and fight this. I've met many cancer survivors since my son started treatments and I expect you to be one of them! Especially when you have children. God is good. ALL the time! Hold on to that. Whatever HE leads you to, He will bring you through. I have found alot of helpful information from the Leukemia/Lymphoma Society and www.carepages.com. is a patient website. I pray the Lord show you His presence in your life today and may you know that you are not alone. Crystal 

 

Thank you for your kind words of encouragement. I've been to the Dana-Farber Cancer Institute and have been told by doctors there that at this point it appears that I have the indolent form of the disease. For the time being, I'll not need any treatment but rather close monitoring. So thanks again and may God bless you, your son and your entire family.

Hello,  I have posted other messages if you search for them here on this site. I had been sick with LGL as of 1992. I was never treated with anything thank God, however I was suffering with night sweats, weakness, and ever virus that came along. I tried many herbal products with very little change until 2005, I starter taking oleaf leaf extract 1500 mg, C 3000 mg, and COQ10 200 mg, every day! In June 2005 I was benign! I have been living life again. hope this message will help, God Bless. Longbow   

Your supplementation and dosage is unclear.  I wonder ifyou took Vit C?  Also, where did you find oleaf leaf?  The search engine don't have it, except your article.  I have Large Granular T-cell Leukemia.  Is it the same as yours?.