T-cell Large Granular Lymphocytic Leukemia

25 Posts | Page(s): 1 2 3  Next 

T-cell Large Granular Lymphocytic Leukemia

by Witts on Mon Feb 11, 2008 12:00 AM

Quote | Reply

Hello Everyone Out There~~~My 77 year old husband has this RARE leukemia~~~T-cell large granular lymphocytic leukemia. It was diagnosed two years ago, but probably had been "smoldering" undetected for awhile. In fact, after looking at a lab report from a hospital for something else 10 years ago, his lymphocytes were HIGH, and neutrophils LOW then, but not to the EXTREME  that they are now....Lymphocytes are 80 which is much higher than the normal 10-45 range; absolute neutrophils have been staying at .6, not the normal range of 1.6-9.3.

 We DEFINITELY CHOOSE THE ALTERNATIVE, NATURAL METHOD of fighting this condition! A naturopath recommended high doses of vit.C, plus D, E, calcium, tumeric, artiminisin, maitake mushroom,& MSM. He also inquired about the ORIGINAL  Essiac tea, and has been taking 4oz of that 3 times a day.  He has functioned well for 2 years, after having a severe bout of pneumonia, which prompted tests that then finally proved the RARE form of leukemia.

In November, he was FINE...but came down with a bad cold after visiting some friends. That is gone, but he is very fatigued and lying down much of the time....TRYING to regain his energy.  Have seen a few ideas on this site and shall do some MORE RESEARCH.

All we can say is: NO CHEMO!!! It will only KILL the good factors he has left. And we are going to KEEP TRYING! Shall watch for more info on this site....Thanks everyone...."The Old Fogey" and Newt

RE: T-cell Large Granular Lymphocytic Leukemia

by Shemay on Mon Feb 11, 2008 12:00 AM

Quote | Reply
Thank you for this post. You have mentioned a few supplements that I am not familiar with and I will do some research on them and perhaps add them to my own arsenal. I too chose to use only alternative medicine for my non Hodgkin's and have experienced great results. Did your naturopath recommend the high dose Vitamin C as an intravenous treatment or just orally? I did the Intravenous once a week for a few months along with 10grams daily orally but now do the intravenous only every six weeks or so as maintenance. I still take 10grams(10,000mg) orally daily and if I begin with the sniffles or have any other sign that I might be coming down with something then I boost my intake to tolerance which for me personally can be between 30,000 to 40,000mg daily. It only takes a day or so and voila! all symptoms disappear. Isn't it such a relief and comfort to know from our own experience that cancer can be controlled and even cured using these gentle natural substances. I only wish more people would have faith and give it a try. Best regards

On 2/11/2008 Witts wrote:

Hello Everyone Out There~~~My 77 year old husband has this RARE leukemia~~~T-cell large granular lymphocytic leukemia. It was diagnosed two years ago, but probably had been "smoldering" undetected for awhile. In fact, after looking at a lab report from a hospital for something else 10 years ago, his lymphocytes were HIGH, and neutrophils LOW then, but not to the EXTREME  that they are now....Lymphocytes are 80 which is much higher than the normal 10-45 range; absolute neutrophils have been staying at .6, not the normal range of 1.6-9.3.

 We DEFINITELY CHOOSE THE ALTERNATIVE, NATURAL METHOD of fighting this condition! A naturopath recommended high doses of vit.C, plus D, E, calcium, tumeric, artiminisin, maitake mushroom,& MSM. He also inquired about the ORIGINAL  Essiac tea, and has been taking 4oz of that 3 times a day.  He has functioned well for 2 years, after having a severe bout of pneumonia, which prompted tests that then finally proved the RARE form of leukemia.

In November, he was FINE...but came down with a bad cold after visiting some friends. That is gone, but he is very fatigued and lying down much of the time....TRYING to regain his energy.  Have seen a few ideas on this site and shall do some MORE RESEARCH.

All we can say is: NO CHEMO!!! It will only KILL the good factors he has left. And we are going to KEEP TRYING! Shall watch for more info on this site....Thanks everyone...."The Old Fogey" and Newt


RE: T-cell Large Granular Lymphocytic Leukemia

by longbow on Sat Feb 23, 2008 12:00 AM

Quote | Reply
Hi, I take olive leaf extract with c and coQ10, it is the thing to use. look up my other messages and learn more. God bless, Longbow

RE: T-cell Large Granular Lymphocytic Leukemia

by casherrie on Tue May 13, 2008 12:00 AM

Quote | Reply

Hello, Thank you for posting this information.  My mother, who is 70, was diagnosed a few months ago too.  Her blood has been monitored for 10 years due to this problem but they recently gave it a name because she had many infections & mouth sores this year & her neutrophils were going even lower .3?.

Her doctor recently tried Methotrexate (sp?) with a steroid protesone (pardon my spelling ) that didnt do anything.  There were also some use of Neuprogen in between.  Right now her neutorphil count is going up but her lymphocites are too high & her red blood cells are now too low.  So, she was referred to Stanford Cancer Center here in California.  They recommend trying another immune suppressing treatment - Cyclosporine but it seems they dont really know if it will work - only 5-10 cases of this T-cell LGL have been treated successfully in the last 5 years there.

Anyway, this post was a breath of fresh air but wondering how do you go about finding a good naturopath?

RE: T-cell Large Granular Lymphocytic Leukemia

by andrewroy on Thu Aug 07, 2008 12:00 AM

Quote | Reply
Hi, I am a 64 year old male  who was diagnosed with LGL leukemia in 2001.  I was pretty much asymptomatic except for the occassional sinus infections I can't get rid of without antibiotics. Last winter that changed and brought me out of my denial.  While skiing I started noticing that I had become extremely week, especially in my legs, I had noticed some weakness over the years, but largely ignored it thinking it was just a part of old age,and getting out of shape. My blood doctor put me on some medication, (gengraft) for 90 days but it failed to help the problem to any extent. I've been exercising as much as I can to help the problem, but I've only had moderate success.  I also started having excessive fatigue. Sometimes I'll sleep for 12 hours.  I usually try to exercise 2 days, and then I'm pretty shot the third day and do nothing.  I'm curious as to what symptoms other persons with this disease experience.  My doctors don't give me much information, except to say that I'll know when the disease starts acting up.

RE: T-cell Large Granular Lymphocytic Leukemia

by patsac on Mon Jul 06, 2009 12:00 AM

Quote | Reply

 

On 8/7/2008 andrewroy wrote:

Hi, I am a 64 year old male  who was diagnosed with LGL leukemia in 2001.  I was pretty much asymptomatic except for the occassional sinus infections I can't get rid of without antibiotics. Last winter that changed and brought me out of my denial.  While skiing I started noticing that I had become extremely week, especially in my legs, I had noticed some weakness over the years, but largely ignored it thinking it was just a part of old age,and getting out of shape. My blood doctor put me on some medication, (gengraft) for 90 days but it failed to help the problem to any extent. I've been exercising as much as I can to help the problem, but I've only had moderate success.  I also started having excessive fatigue. Sometimes I'll sleep for 12 hours.  I usually try to exercise 2 days, and then I'm pretty shot the third day and do nothing.  I'm curious as to what symptoms other persons with this disease experience.  My doctors don't give me much information, except to say that I'll know when the disease starts acting up.

I am a 61yr old female. I was diagnosed in 2000 and have been asymptomatic since then. I have not been able to get any information from doctor about what to expect which makes me very nervous. Have you had any other issues other than weakness?

RE: T-cell Large Granular Lymphocytic Leukemia

by andrewroy on Wed Jul 08, 2009 12:00 AM

Quote | Reply

 

On 7/6/2009 patsac wrote:

 

On 8/7/2008 andrewroy wrote:

Hi, I am a 64 year old male  who was diagnosed with LGL leukemia in 2001.  I was pretty much asymptomatic except for the occassional sinus infections I can't get rid of without antibiotics. Last winter that changed and brought me out of my denial.  While skiing I started noticing that I had become extremely week, especially in my legs, I had noticed some weakness over the years, but largely ignored it thinking it was just a part of old age,and getting out of shape. My blood doctor put me on some medication, (gengraft) for 90 days but it failed to help the problem to any extent. I've been exercising as much as I can to help the problem, but I've only had moderate success.  I also started having excessive fatigue. Sometimes I'll sleep for 12 hours.  I usually try to exercise 2 days, and then I'm pretty shot the third day and do nothing.  I'm curious as to what symptoms other persons with this disease experience.  My doctors don't give me much information, except to say that I'll know when the disease starts acting up.

I am a 61yr old female. I was diagnosed in 2000 and have been asymptomatic since then. I have not been able to get any information from doctor about what to expect which makes me very nervous. Have you had any other issues other than weakness?


 

My muscle weakness was recently diagnosed, (after a muscle biopsy) as Inclusive body myositis.  According to the neurologist that diagnosed the disease, it s a completely separate disease from the LGT, although it acts somewhat similar, in that the body's cells attack the body in this case the muscles, in other words a autoimmune disease. It also is a slowly progressive disease, that apprently will not kill me. I think I read somewhere that about 1/3 of persons with the disease also have LGT. If this is all correct I guess my leukemia is still asymptomatic.

RE: T-cell Large Granular Lymphocytic Leukemia

by Doublegee68 on Sun Jun 06, 2010 10:15 PM

Quote | Reply

I am a 42 year old female, who was diagnosed with T-cell Large Granular Lymphocytic Leukemia in 2001 at the Mayo Clinic in Rochester, MN, at the age of 33.  I entered the hospital seven months prior with a severe mononucleosis infection and gallbladder stones.  They removed my gallbladder and treated me with intraveneous antibiotics for several days before release me from the hospital.  Follow-up testing eventually revealed the T-cell LGL Leukemia.  My bloodwork is monitored yearly, along with taking vitamin supplements.  I am anemic, so I do take iron pills as well.  However, I still struggle with fatigue.  Some of the supplements suggested are new to me.  Are any of them specifically taken to help with the fatigue?  I take B-12 as well to help with the iron absorption.  For a long time, I contended with mouth sores, but those have subsided within the last year or so.   

RE: T-cell Large Granular Lymphocytic Leukemia

by longbow on Tue Jun 08, 2010 11:33 PM

Quote | Reply

Hi, I went to the same Mayo in 1995, I had LGL for sixteen years and got rid of it in 2005. I take 1500-3ooo mg of Olive leaf extract, 3000 mg of vitamin C, and 200mg of CoQ10 all each and every day. when I first started this I was taking 10000 mg of C a day. I have more info in these messages. also using turmeric has helped others. eat lot of fruit and vegetables, red grapes help, excerise is a must, even when your tired. fight and don`t give up. God Bless you. Longbow  

RE: T-cell Large Granular Lymphocytic Leukemia

by Johnsonrrr on Wed Feb 22, 2012 09:31 PM

Quote | Reply

Hi,

I noticed that the posts here are pretty old but thought I would give this a chance.  Any current info or thoughts woul dbe greatly appreciated. 

My husband was diagnosed with T-cell Large Granular Lymphocytic Leukemia about 2 months ago.  He is so sick.  Symptoms include high fevers daily of up to 104 - 105, headaches, mouth ulcers, severe fatigue & arthritis pain in almost all joints, night sweats, uncontrolable shaking chills, enlarged spleen, coughing since December 2011, and he has lost 30+ pounds in just a few months.  He is skin and bones.  6' tall and weighs 145 lbs. He is 56 years old.  Doctors just started him on Cyclosporine (modified).  It has been about 2.5 weeks now.  The only noticeable change is that his spleen is considerably smaller.  All other symptoms are still there.  He takes a vegan multi daily, tumeric, cinnamon, buffered "C", B12, and flaxseed oil.  He has a good appetite and is eating well for now.

What else can I do for him?

Johnsonrrr

25 Posts | Page(s): 1 2 3  Next 
Subscribe to this message board discussion

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

We care about your feedback. Let us know how we can improve your CancerCompass experience.