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LGL T-Cell Leukemia

MommywithLGL
Posts: 1
Joined: Jan 2007

I am a 38 year old female just recently diagnosed with LGLL. I have a 17mo old little girl, so the statistics of 10 year life span and no cure are very upsetting to me. This is such a rare disorder. I am trying to stay positive but since this is so rare, it limits research. I would love to hear anyone elses story who may have this. Even if I could hear from another parent who knows their disease is non-curable. How do you ever get past that horrible feeling?

Superstar
Posts: 8
Joined: Jun 2005

Your post struck me, assumably because I'm a mom as well (29 yr. old) of a 2 1/2 yr old with another due in Sept. I feel like there are no great words of wisdom for me to give other than this....please don't ever give up hope! They are coming up with new treatments/options every day it seems. Don't let the statistics be your driving force...keep the flame of hope alive. I don't know what your religious background is but there was a bible verse that I clung to as I was going through my treatments, it's Psalm 91:14-16. If you have time, look it up - it may bring you some comfort. Your in my thoughts...may God bless you and your family.
Kim

bctrissel
Posts: 2
Joined: May 2010

I am a 54 yr old mother and grandmother diagnosed this month (May of 2010) with TCell LGL. I learned of this diagnosis after my GP sent me to the hematologist for anemia that could not accounted for. My hematologist did a bone marrow biopsy to confirm. He also took me off of several prescription meds I was on that lower blood cell count. That alone has helped tremendously. I have also gotten very serious about a healthy diet and exercise which is also helping so far. I have a low grade form of this disease/disorder so far. I do not have the lymphoma that so many sites direct me to, and am exceedingly grateful for that. Nor any of the other accompanying autoimmune disorders, such as lupus or rheumatoid arthritis, that can be present with this form of leukemia. I do not require treatment unless or until my condition worsens. My doctor cannot say when that might be but feels I have already had this for at least two years and didn't realize. I'm feeling fortunate to have a lesser evil when it comes to leukemia but am wondering what to expect. Are any of you remaining at this low level form or is treatment inevitable eventually? He said he has treatment options but doesn't want to use them until really necessary because of the potential side effects. He also said there are several new promising treatments, including a possible vaccine in clinical trails. Are you aware of these and how long does it take before they become available? My goal is to be as healthy as possible and hang in there for the vaccine. I'd much appreciate hearing from any of you. This is a puzzling and disturbing diagnosis, especially when I am also in treatment for anxiety disorder and it was the brain chemistry meds he had to change, so much adjustment all around.
Thanks in advance.

doaneman
Posts: 2
Joined: Jun 2010

just wanted to let you know that i have been dealing with LGL for about 16 years. there are plenty of treatment options, and low-dose treatment is the norm now. i currently take low-dose cyclosporine. i have lived well with this for many years. once you deal with the shock of the diagnosis, you find your way in dealing living with it. some people never have to be treated, or are maintained on a low dose of medication. i have gotten to the point of being grateful that i have this form of leukemia in comparison to much worse diseases.
good luck

bpactor
Posts: 2
Joined: Apr 2011

Hi,

I am replying to your posting since it is the most recent. My Aunt has had
Chronic Lymphocytic Leukemia (CLL) for many years, and lately has been treated for it with chemo, transfustion, etc. Now she has been found to also have large granular lymphocyte (LGL). We are looking for doctors who have treated patients with both diseases, as it is apparently very rare to have both, and her doctor has not seen this before. Her white blood cell count is extremely low at this point, so we need to move fast!

Thanks for any help!

tseneff
Posts: 3
Joined: Apr 2011

Hi,
Maybe check with the Mayo clinic as they might be able to help you. I was just diagnosed yesterday with T-cell LGL leukemia. They had me diagnosed the last 2-3 years with chronic benign neutropenia but I got a new doctor a few months ago and I guess he was a little more eager. At least they found out. I am finding this type of leukemia is very rare and there is not a whole lot of literature on it. My white count is always low as well and my neutrophils are always between 400-900, leaving me open for infection. They want to start treating me with a low dose chemo drug called Methotrexate. We will see.

I hope you find a doc soon for your aunt.

alexapr07's picture
alexapr07
Posts: 1
Joined: Mar 2007

I am a 58 year old female that was diagnosed a year ago with T-cell large granular leukemia.It was discovered by chance when a neurologist had extensive tests done to discover the reason for my main symptom 'burning sensation on the feet'. The neurologist did some nerve tests and determined I had peripheral neuropathy, since there are many causes for this I had detailed blood tests thinking I had diabetes.All my tests came out normal but the comprehensive blood panel showed elevated lymphocytes 74.8. A bone marrow biopsy confirmed the diagnosis.After 1 year of blood tests every 8 weeks the blood levels varied but in the most recent test I had the same results as a year ago.My doctor said this type of leukemia was very rare,and was very slow growing. Many people found out they had it as I did, as a secondary diagnosis. He determined I was in the very early stages of the leukemia and it would be 10 - 15 years before I saw any more development. The only treatment for now is watch and wait.In a 1 -10 scale of being worried he said I could be about a 2.Since I am close to retiring I wanted to know f I should retire now and enjoy life before I got worse. He said I most likely be dead of old age before I really got worse.He said this type of leukemia happened to people over 50 and from jewish descent.I'm catholic , Cuban & British descent, but from doing genetic dna mapping on national geographic I found my far distant relatives were jews from Russia. go figure..
You seem to be too young to have T-cell LGL.I would get a second opinion and get a spinal or bone marrow biopsy done.Do not confuse this T-Cell Large granular leukemia with Lymphocytic leukemia which is more aggresive. I to fell in the scare trap. since it's so rare the leukemia search engine sends you to the other leukemia CLL which is more common and aggresive.
As to attitude, I decided to get serious about my diet and exercise plans and I have taken a more relaxed attitude at work (I'm an architect).Don't postpone things you really want to do, set your priorities straight and most importantly remember to laugh.My best friend keeps me inline whenever I worry I'm getting worse because I'm too tired. "Your leukemia is not worse.You are just working 10 hours a day and anyone normal would feel tired!

meerkat26
Posts: 2
Joined: Dec 2009

alexapr07
I just joined this site. Liked reading your story. Thanks for the inspiration and level headedness. I am new to this so I'll just say goodbye for now.

bctrissel
Posts: 2
Joined: May 2010

How are you faring? I see you were diagnosed four years ago now. I just joined this club although I may have belonged for years and didn't know. I'm trying to get a feel for what to expect, am only being closely monitored, no treatment now.

Grace10290
Posts: 9
Joined: Oct 2007

I lost my dad to leukemia last year when I was 16 years old. I have recently learned a lot about Macrobiotics, a diet based on eating whole grains and vegetables and that calls for the elimination of meat and dairy from your diet. Researchers have found a connection between animal-based proteins and cancer, diabetes, heart disease, Alzheimer’s, and many other diseases. Basically, the more meat, dairy, eggs, and processed foods you consume, the more likely you are to get one of the diseases mentioned above. The first stage of cancer (initiation) is caused by carcinogens entering your body. These carcinogens can come from a number of different sources and they cause the initiation stage of cancer. The second stage of cancer is progression. Studies have shown that as a person increases the amount of animal-based proteins in their diet, the faster the rate of progression will be. If a person eliminates animal-based proteins from their diets however, their cancer can stops progressing (a remission of sorts). By eating a plant-based whole foods diet, you can actually turn off cancer cell growth! To heal oneself from this diet, a person has to eat specific foods that target the specific cancer that they have. For example, foods like daikon (a type of radish) help break up tumors in the body. Shiitake mushrooms lower blood cholesterol by a huge percentage.
I know this probably sounds crazy, I thought so too at first. You're probably wondering why you've never heard of this before as I was when I heard about this. The reason most people don't know about macrobiotics is because our economy depends largely on the meat and diary industries and many scientists and doctors don't want to admit that cancer, a disease that affects so many people, might be that easy to cure.

Many people are not willing to give this a try. They don't want to believe that many of the foods they love could be killing them. Adopting a macrobiotic lifestyle is certainly less expensive and less painful than paying medical bills and getting massive doses of chemotherapy and radiation. This is definitely something to consider, even if you do consider it an unlikely last resort. I just wanted to let you know about this since you do not seem to have been given much hope. I understand if you can't find it in youself to believe what I say, but I don't think it's fair to deny you the privilege of knowing that there might be real options for your treatment.

If you are skeptical of what I have just claimed to be true, here is some more information if you are interested in at least learning about Macrobiotics.

The scientific research that shows that this diet works can be found in The China Study, an amazing book by Dr. T. Colin Campbell and Thomas M. Campbell II. This book provides proof that this diet works and explains why/how it works.

The Cancer Prevention Diet- Michio Kushi- "outlines the causes and cures for cancer, [is] filled with testimonies from cancer survivors, [outlines] the different types of cancers, and [has detailed] information on menus, cooking, [and] healing tactics".

Recovery Stories:
1. Becoming Whole -by Meg Wolff-cured of invasive breast cancer

2. My Beautiful Life- Mina Dobic-cured of ovarian cancer

3. When Hope Never Dies-Marlene McKenna-cured of malignant melanoma

4. Recovery from Cancer- Elaine Nussbaum-cured of ovarian cancer

5. Kamikaze Cowboy-Dirk Benedict- cured of prostate cancer

6. Healing Miracles from Macrobiotics- Dr. Jean Kohler and Mary Alice Kolher (cured of pancreatic cancer)

7. Macrobiotic Miracles: How a Vermont Family Overcame Cancer- Virginia Brown and Susan Stayman (malignant melanoma)

8. Cancer-Free- Kit Kitatani- cured of stomach cancer

9. Controlling Crohn's Disease The Natural Way- Virginia Harper

There is much more literature out there, but these are just a few titles.

If reading is not for you, check out youtube. Look up "Diet Saves Their Lives vol.1". There are at least 10 volumes with people telling their stories about how the Macrobiotic diet saved their lives. They include people who have recovered from the following diseases: Lymphoma (Hodgkin’s and non-Hodgkin’s), leukemia, Crohn’s disease, breast cancer, bone cancer, and more.

If this information interests you, there are macrobiotic counselors that are better equipped to explain how the diet works than I am.

If you adopt a Macrobiotic diet and you make sure you are eating foods that give you the right amount of nutrition, what harm could it do to at least give it a try?
I hope this helps, and I hope that you can keep an open mind. If there is any chance that you can be around to watch your little girl grow up, than trying something like this might be worth it. Good luck with everything.
Grace

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello Everyone,

Just wanted to let everyone know, as with all alternative and complementary treatements, be sure to talk with your doctor regarding interactions with current treatments, potential side-effects, and risks associated with foregoing conventional treatment. You can also contact the American Cancer Society's National Cancer Information Center for up to date information on complementary and alternative cancer treatment as well as information on the rare but possible spontaneous remissions that can be associated with cancer. Cancer Information Specialists can be reached 24 hours a day at 1-800-227-2345.

Take care!

Dana

kirlvolz
Posts: 2
Joined: Nov 2008

I love what you have posted....thank you
Bless you gracie.
Kirsten

kirlvolz
Posts: 2
Joined: Nov 2008

Who the heck told you 10 years,,,that is a bunch of bull........I was dx in 1995/1996 and your right there is no tx for it ...There is a study I have joined ....It is through Penn State Cancer Institute. Dr Thomas Loughran. 717-531-7377. Google it as well. They may offer some helpful info for you. I am feeling fine , I just recently moved but I use t go to Dana Farber in Boston and I was just monitored . I am also going to a seminar on eating raw food next week.
Diet and exercise is HUGE. I do drink Acai berry berry juice everyday and when I dont I can feel it.......
I do have pitty parties and them I remember that I have two lovely children that I need to be strong for.....I would love to chat with you.
Kirsten

mama c
Posts: 5
Joined: Jun 2009

Hi Kirsten
Im interested in the study you are in with Dr. Louchran. My daughter saw him for the 1st time in late dec when she was diagnosed with T cell LGL. She is 19 yrs old. She is just being monitered right now no meds, She also excercises daily and just started drinking acai berry juice. Whta does Dr. Loughran say about the juice?? It seems her blood work is better when she drinks the acai berry, could that be possible? Hope to hear from you, if you dont mind me asking , how old are you?
Mama C

mama c
Posts: 5
Joined: Jun 2009

My daughter who is 19 was just diagnosed with t cell lgl leukemia and we have been to see Dr Loughran at the hershey cancer reseacher center. It is very very rare that someone so young could have this disease but she has it. She is not on any medication yet but her neutrophil levels are running borderline low, and her hgb and hct are also low but steady. She attends college and is very determined to keep attending and get her degree, although I dont know how she manages to go to all her classes and study. She eats very health foods whole grain, fruits and veggies not too much meat maybe chicken or turkey occassionally. We are very optomistic about her living a "normal" long full life. She exercises daily and says this really helps her energy level for the day. Does anyone know of any other teenagers with this type of leukemia. I would love to chat with parents of any young adult who has this disease. Also if you havent read the book "The Secret," not sure who the author is, please read it. My daughter and I have both read it and we have a different outlook about the disease and life in general, it is a great great book. Hope to hear from anyone.
MaMa C

mklein
Posts: 2
Joined: Dec 2009

My 17 year old son was diagnosed with LGL earlier this year. He presented with zero neutrophil counts and low platelets. It was misdiagnosed as aplastic anemia and he endured a failed BMT. We fired his old medical team (they were on their own team I learned at my son's expense). New team; new result. He is returning to his "old" routine and looking towards college and doing all things that any other teen would be thinking about. If things don't pan out with your current physician I would strongly recommend you see Dr. Maciejewski at Cleveland Clinic. Son is doing so well I don't know why I am on this site, frankly. But I could not in good conscience read your post without registering and pointing you to Mace if you ever have a problem.

mama c
Posts: 5
Joined: Jun 2009

Hi mklein
My daughter was also misdiagnosed and almost had her speen removed,had it not been for my research about certain blood tests. We,too, left that oncology team in our home town they weren't even close to the correct diagnosis, even screwed up her bone marrow biopsy repots. Is your son on any medications and are his hgb and hct effected. My daughters neutrophils are between 400 and 700 and lymphocytes and around 85,her hgb is 9.9 and hct 29.9 she has gotten both h1n1 vaccine and flu vaccine. Im interested to know what protocols and blood levels your DR uses for limits. my daughter is a Psycial Therapy major in her 3rd yr and is very commited to continue to attend college away from home. She has a wonderful oncologist near her college and the specialist in penn has only seen her once last dec. He doesnt want to see her unless things take a turn for the worse,but he does get blood work every month.If your son wants to talk to my daughter I can ask her to contact him. Take care

mama c

mklein
Posts: 2
Joined: Dec 2009

HNY mama c
He did not get H1N1 vaccination since it is a live virus. Neither did he get the seasonal vaccine. His HGB/HCT have returned to normal. His platelets were low in the past but have been low normal for a quite some time, but once again are low (110) ... we are in new territory and will see what transpires wrt platelets. There had been discussion about removing spleen but recovery of platelet counts made it a moot issue. Then there is the ANC. He was on cyclosporine post-BMT. He had tremendously bad ance that turns out probably to have been allergic reaction to CSA. Prograft did not maintain counts. He has had several neulasta shots. Usually every three weeks or so. He was completely med free (not even neulasta) for 3 months, but then needed another shot about a week ago. So, to answer your question, treating HGB/platelets has not been an issue, but they will give him a shot if ANC down to 400 or so. It has been down in the 200s on many occassions and he has not yet had any infections. If platelets turn out to be non-issue I think the plan is to start methotrexate if he needs a shot every 3 weeks, but to just stay with shot only if we get lucky and shot works for months at a time. Campath if MTX does not work.
mklein

kevinfrich
Posts: 2
Joined: Feb 2010

Have been treaed for LGL for several years. Really had no symptoms other than fatigue and weight loss for the 1st year. Went through about 8 months of Methrotrexate and had no real results. Neutophils hovering in the 200-500 range. Went on Cyclosporine and things really got much worse. Neutophils became "unmeasurable" and platlets dropped to 50.
Went to NIH and had Campath treatment almost a year ago. Took some time but readings steadily climbed. Last week my Netrophils were 3500 & platlets have stayed 200-300. Not sure I would be here to write this without that treatment.

mama c
Posts: 5
Joined: Jun 2009

Hi Kevin
Ive not heard of campath is this something new? I know we are all concerned with neutriphil counts, but Im also interested in lymphocyte levels, do yours fluctuate? If you dont mind me asking what is your age? I have found another parent who has a a child with LGL leukemia my daughter is 20 the other gentleman's son is 17 or 18. Is your MD a specialist in this type of leukemia? Sorry about the 20 questions, but Im starving for new Info. Thanks

Mama C

kevinfrich
Posts: 2
Joined: Feb 2010

Sorry I did not see this message for so long. 1st I am 62 years old. Seems like no one is really a specialist in this disease. Campath is actually a drug called Alemtuzumab. It was administered as part of a Clinical Trial at NIH. My lymphocytes were all over the place 4.5% - 43% (not sure about this because every report seems to format the values differently. I now am a full year with good stable numbers. My last visit to NIH they said they had several people in remission for more than 3 years.

lbishop52
Posts: 1
Joined: Feb 2010

Hi, I just joined this site and was reading your post. My hubby was just diagnosed after 8 years of no diagnosis and not knowing. We live in FL and our Dr. referred us to Neil Young at NIH in 2003 where he confirmed same diag. PRCA and only offered protocol de juor. We recently were referred to Moffitt Ca. Center in Tampa to a Dr. Alan List(friend of Neil Young) and were given this diagnosis from the Flow Cytometry testing. At first they thought it was MDS but they were happy to report LGL because it is curable!!! My husband has been transfusion dependent three different times during this and it takes 8-9mos to get the iron overload off and get him producing retics(baby rbc's) again. Because of damage to his liver from the iron, they did not start off with methotrexate but rather the cyclosporine A. He is on it now for 4 weeks, but Dr. List says it will take 6wks to 2 months to start working. Says RA goes along with it, too. I have only found one person that was diagnosed with it and is now cured. She was being treated at M.D. Anderson. That was good news. How are you now? What is the Campath treatment? Thanks LB

mama c
Posts: 5
Joined: Jun 2009

Hi MKlein,

MY daughter just had her latest blood work done HGB up to 10now HCT 30 her neutraphils have been 400 for the past 3 months but no infections. Lymphocytes are 85. The H1N1 vacine she got was the shot and its not live, if you want to look into it. I was wondering about the neulasta shots, how much did they increase his ANC? Do his Lymphocyte levels fluctuate al all, my daughters are anywhere between 70 and 95. When I talked to the specialist last year and he had mentioned methotrexate he talked about the oral tabs taking so many once a week, is the shot a better deal? Im thinking of taking her to your sons MD this summer for a second opinion, it seems our MD doesnt want to see her unless things get bad. she just turned 20 in Dec and even though she was diagnosed with this in dec of 2008 she actually has had it since 2004 after looking at some bloodwork from that summer, of course no one picked up on it, pediatrician didnt even know about the high (89) lymphocytes until I showed him the blood work back in jan 09. What do they look at???????? Thank godness for the internet and parents like us who question doctors diagnosis,when things dont seem right. Take care-- Its cold here in upstate NY!!

Mama C

robinman
Posts: 1
Joined: May 2012

Hi Mama C. I noticed you live in upstate NY and this is an old post but I wanted to touch base with you to see if you have gotten any good medical care for your daughter. My husband was just diagnosed with LGL. We wanted more answers then his Hematologist could answer. I called the leukemia society and asked if there is any experts in this disease. There is one in the country....in hershey penn. His name is Dr. Thomas Loughran. His # is 717-531-4034. He practices at the Penn State Hershey Cancer Institute. Probably every medical based article you have read he has written. He is a great guy to talk to and was the Dr. who discovered LGL. He is doing lots of research and also has a national registry for LGL. I'm not sure where in upstate NY you are but we are in Ithaca. It was 3.5 hrs. and was worth the trip! Good luck, Robin

kiermeg
Posts: 1
Joined: Apr 2010

I am 57 and I was diagnosed with T-cell LGL Neutropenia in 2000. Don't really know when you go from neutropenia to leukemia, but I have all of the same issues. I went to see Dr. Laughran when he was in Florida a long time ago before he went to Hershey. I had found that he had done a study on this rare disease so I went to talk with him. At that time I was on no medication to treat my illness. After the visit, my dr. here in Dallas, Texas decided to put me on methotrexate. I've been on the lowest dose 5mg 1xweek for 6 yrs. They just increased to 10mg a week. I have had a neutrophil count of 100. The lowest they can read. I usually am between 700-800. People freak out when they see my neutrophil count but luckily I am pretty healthy!! Of course, I do all of the flu shots but hardly get colds. I am also a flight attendant and am around lots of people. When they doubled my methotrexate my blood numbers jumped to normal. I had blood work two days ago and now they are back to my normal. My dr. here has always said the only thing they worry about is getting on top of an illness immediately. None of this 10 years to live stuff. Well, I've already done that many. Other than getting my share of Dr. visits I have been able to live a normal life. You just wish someone would have a definite diagnosis with a precise cure. Does your daughter have any other strange issues with this illness other than her blood count?

nickolas
Posts: 1
Joined: May 2011

Hello mama c. I am 25 and i probably have T-lgl for more than 6 years. I confirmed as an lgl patient this year. I am monitored for about 5 years without a diagnose because that t-cell population would not appear and that situation confused the docs. But i have symptoms: neutropenic less than 500 neutrophils, anemia beetween 27-30 and my lymphocytes are somewhere at 70-78. The symptoms accidently found when in 2006 i went to the hospital with mono(EBV) and i was in very difficult situation. But with 2 blood transfusions and filicine i was just fine. Althought i recovered in 10 days! All the years between 2006-2011(present day) i am living a normal life and sometimes to the edge i could say, as a young man. I finished my studies, i got a job, i went to the army (non optional in my country), i go to the gym almost everyday and i quit smoking this year!!! I have never felt fatigue or exhausted or anything like that. This year i sickenned from H1N1. That was a tought one but with antibiotics and three transfusion i beat it in 6 days. It took me 3 bone marrow exams to find the lgll. First it misdiagnosed as aplastic anemia but really quick docs correct it announced me my lgl leukemia. It didn't shocked me. The case of aplastic anemia shocked me more. I'm gonna live my life as i want till the end of my days. Now i am in treatment with MTX, prednisone and folic acid and i could say except the two days of MTX tha i feel a little nausea the other days i am strong as a horse maybe better than before the treatment. So i say your daughter not to live as a patient of something. She has to live her life normally like nothing happens. If your mind believes that you are sick then... you get sick. Just get monitored 3 or 4 times a year and everything is Ok. Needless to say that i caught the flu all this years more than 10 times and i was recovered in 2 days sometimes less. It's not a bad idea to take a low oral treatment maybe she can put it in remission. I take 20mg/week MTX and 5mg/day presolone with filicine and i feel great. I will see possible results in 3 months from now. So mama c don't worry everything is OK your daughter in 20 years may be healthier than other healthy people. As my forefathrs said a healthy mind in a healthy body (νους υγιής εν σώματι). Keep our lifes in these tracks we will die 100years old. (The only thing that scares me a little is RA that i haven't at least yet. But my mother, my aunt and grandmother have it).

meerkat26
Posts: 2
Joined: Dec 2009

I understand what you mean. I was diagnosed last year with Chronic T cell large granular lymphocytic leukemia, and when you see it in print ( the words without remission ) it hits you in the stomach. Did they tell you the life expectancy is 10 years? I didn't get an answer because of the rarity of it. Wish there was more info.

sunnyd1975
Posts: 1
Joined: Mar 2010

hi, I can unfortunately relate! My husband and I are 35 and he just got diagnosed in February. We have 3 young children, and it's definitely scary to hear the word leukemia!
I hope that 3 yrs later you have gotten some peace with the diagnosis :)

the 10+ year life span statistic is annoying and vague. I think it's in the context that this disease is "normally" diagnosed at age 60, so people diagnosed at that age live at least another 10 yrs. Although it isn't "curable" it isn't an aggressive form and doesn't generally require aggressive treatment like other forms of leukemia.

Since being diagnosed we've also been frustrated at the rarity of the disease and how it means there's very little useful info available on the internet (that non-doctors can understand) 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.

-Deirdre

Longbow
Posts: 2
Joined: Feb 2010

Hi, I had that stuff for sixteen years and was sick all the time, up and down, in and out of hospitals. The doctors and insurance company did nothing for me. I have posted my story before. I used and tried many different herbs and vitamins. Researched alot of information and found what gets rid of this junk. It worked for me and I would like to help others. I take this every day. 3000 mg vitamin c , 200 mg CoQ10, 1500-3000 mg of Olive Leaf Extract. Olive leaf extract is an anti fugal. read about it! I get all this at Swanson Health Products, the product numbers are as listed; sw106, swu561, swh158, Please give it some time. God Bless, Longbow

richssara
Posts: 1
Joined: Oct 2012

Longbow;

Thanks for the hopeful story. I'm over 6 years into this and just started chemo in May. Improving slowly, but methinks too slowly for how sick the chemo makes me.

A few questions if I may:

1: Are you wholly pharma-free now?
2: Are you monitored by a Dr., and, if so, are you chronic or in remission?
3: Is the CoQ10 for the neuropathy?
4: Any studies on this approach that you're run into yet?

Thanks much and Gd bless, Rich S

Longbow
Posts: 2
Joined: Feb 2010

Hi, I had the stuff for sixteen years and got rid of it taking 3000mg of vitamin c, 200mg of CoQ10, and 1500- 3000 mg of Olive Leaf Extract. I take it all every day. Give it time to work and read about Olive Leaf, I get mine at Swanson Health Products. Product numbers are sw106 for c, swu561 for CoQ10, and swh158 for Olive Leaf Extract. God Bless, Longbow

GreenGrowies
Posts: 1
Joined: May 2011

I have known about mine since July 6th, 2006. I went to the Doctor because I was tired... No big deal. When i got home that day, there was a message on the answering machine... "COME BACK IMMEDIATELY"! They put me in "The Slammer" (I call the hospital for a blood tranfusions.) The diagnosis first was CLL and then LGL-T. I have a Fantastic Doctor in Ocoee and Tampa. After tranfusions for over a year, great doctors, proper medicines, faith and a good PMA.... my CBC now is as close to normal as possible... How about that. YES it is very rare... very scarey... a new way at looking at LIFE and the WORLD... But I am doing well now at 72 and am going to Scotland and Ireland at the end of this month.
HANG IN THERE GANG... WE CAN MAKE IT!
Bob

TrueTiger
Posts: 4
Joined: Oct 2012

Hello,

I have recently been diagnosed with T-Cell LGL Leukemia, a very rare type of blood cancer.  LGL - Large Granular Lymphocytic.  Resources are limited still but have been able to consult with Dr. Thomas Loughran. It's the patient support network on this condition that I'm trying to reach out to so that I can talk to others who are in the same boat. 

Regards.

ronb59
Posts: 3
Joined: Mar 2013

True Tiger,

I was diagnosed in December 2012 with LGL Leukemia with Red cell anemia. I'm still looking for resources as well. I live in Texas and I'm the only person at the center I go to with this disorder. However, I have been dealing with the symptom of the amemia since October of 2012. Lots of transfusions. I still work when I'm not doing that. Just can't lift anything. My Dr seems to be fairly knowledgable but I now have a better understanding of the frase "Practicing Medicine"! Since I didn't respond as well as he wanted on Cyclophosphamide he put me on Methotrexate which didn't do much either. So now on to Cyclosporine.

I hope we can get this under controll so I can get on with getting on with my life. I'm only 53 and have lots more to do and two teenagers still at home. I've read everything I can find and have found the same thing that most of the articles were written by Dr Loughran.

gggeezer
Posts: 1
Joined: Apr 2013

True Tiger, you were diagnosed a few months before I was - even though I had gone through test after test with another doctor and hospital.  I had been given an ultrasound, bone marrow biopsy and dozens of other tests.  No one could figure out what actually was wrong until I went to WVU Cancer Center.  I have a wonderful doctor that is working with Dr. Loughran.  My doctor was really enthused about the dianosis, as it is so rare.  I want to say I feel privileged to be among the few but it scares the hell out of me even though the life expectancy is 10 years.  I was diagnosed in late February.  I don't know where you are located but stay with Dr. Loughran.  I have been on an antiviral, antibiotic, steroid and Methotrexate since March.  My dr. finally took me off the antibiotic and steroid.  I had lost quite a bit of weight before but after starting the steroid, gained like crazy.  Hang in there.  There are a few of us in the same boat.  Sorry I just saw your post today. 

Regards.

 

 

jbacchi
Posts: 3
Joined: May 2013

I heard about Dr. Loughran way back in the 1990's my doctor at the time read his article on the disorder and put me on low dose methotrexate.  I never went to see Dr. Loughran but, I am now considering it.  It seems that after 16 years of being heathly.  My hemoglobin is dropping (currently 8.6 - it was 12 for years and years!)  My concern is what insurance does Dr. Loughran take.  I have United HealthCare.  Does anyone know if he takes this and how long does it take to get a consultation with him.  

 

I would appreciate all the advice I can get. 

Thanks so much,

Josie

Terrymcharg
Posts: 1
Joined: Sep 2013

Actually I noticed that most posts on here are old!  Is anyone really out there?  I just had my bone marrow and going in for results on 9/5.  Would like to hear from you.  Terry

dadoftwins's picture
dadoftwins
Posts: 13
Joined: Mar 2013

Terry - how did it go? 

My husband has had LGL Leukemia diagnosed since Dec 2011.  He just started Campath - as other treatments had only minimal results.  We are in Columbus OH at The James at OSU.  The best. 

I'd love to communicate with you.  Here if you need to chat. 

Amy

 

ronb59
Posts: 3
Joined: Mar 2013

Terry,

Stay strong and get informed about everything. make sure that you can speak with your doctor about everything and get all the info you can. that way you can have piece of mind.

DevonLea
Posts: 22
Joined: Aug 2012

There are people here =) if you need to talk or anything, write me a message. I am a 30 year old survivor, in maintance chemo now, until march of 2014.

angel0110
Posts: 1
Joined: Feb 2011

my mom has lgl  and she told me last night she thinks even tho she was told she had it about 3 years ago she thinks she has had it for 17 years  do you know of any long living ppl with this

 

doaneman
Posts: 2
Joined: Jun 2010

I have had LGLL for almost 20 years.

Still doing low dose methotrexate. Hemoglobin was the best it's been in years-12.0.

Exercise and diet are key for me.

Hang in there everyone...

ronb59
Posts: 3
Joined: Mar 2013

Well, It's been over a year since my diagnosis. After a couple of different types of therapy; cylcophosphamide, methotrexate and now cyclosporine my hemoglobin is at 12-13. Way better than it was when first diagnosed. I have light years more energy and stamina. I feel that I can do almost anything I was doing  three years ago. I can say this for sure, my prognosis si good because of the will of God thousands of prayers by many and sheer will and medical science. In that order!

 

I have to say that my outlook on life is much different than a year ago. I don't take anything for granted.

paulbid
Posts: 1
Joined: Jan 2014

I am 59 and I was diagnosed with T-LGL in Sept. 2013 after landing in the hospital with an internal rectal infection, where they discovered I had an ANC of 0.

Through neupogen and neulasta shots, I was able to boost the ANC level back to normal range, but it has been a struggle. My local doctor wasn't watching me close enough, and in Dec. I ended back in the hospital again, this time with an ANC of .2 and an infection caused by pseudomonas. I have a large wound on my neck from it that is still healing and requiring daily attention.

I had made an appointment to see Dr. Loughran back in Oct., but due to his schedule, I couldn't see him until just yesterday. I got frustrated with the lack of direction and called Dr. Loughran's office and my local doctor and told them both I wanted to start the treatment ASAP. On 12/7/13, I started the 20mg of Methrotrexate. I don't see any noticeable results yet (take my 6th dose tonight).

I visited Dr. Loughran yesterday at UVA. I didn't learn significantly more than I already knew, except he said Metho could take up to 4 months to be effective. And if not, we switch to Cytoxan and then to Cyclosporine.

It's been a mental and physical struggle for sure, as others have stated.

I get periods of nausea, which Dr. Loughran said is probably from the Metho. My energy level vascillates wildly. Each day is an adventure: am I going to have energy, am I going to be nauseated, or is it going to be a "good day"? I can't wait for these drugs to start taking control.

Meanwhile, I'm getting CBCs done weekly so I can monitor my ANC level. When it goes below 1, I get a neulasta shot, which fortunately for me, does boost my counts.

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