LGL T-Cell Leukemia

MommywithLGL
MommywithLGL Member Posts: 1
edited March 2023 in Leukemia #1
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?
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  • This comment has been removed by the Moderator
  • Superstar
    Superstar Member Posts: 8
    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
  • alexapr07
    alexapr07 Member Posts: 1
    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!
  • Grace10290
    Grace10290 Member Posts: 9
    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
    AuthorUnknown Member Posts: 1,537 Member

    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

    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
    kirlvolz Member Posts: 2
    HI
    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
  • kirlvolz
    kirlvolz Member Posts: 2

    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

    POST
    I love what you have posted....thank you
    Bless you gracie.
    Kirsten
  • mama c
    mama c Member Posts: 5
    LGL LEUKEMIA
    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
  • mama c
    mama c Member Posts: 5
    kirlvolz said:

    HI
    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

    Lgl study
    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
  • This comment has been removed by the Moderator
  • mklein
    mklein Member Posts: 2
    mama c said:

    LGL LEUKEMIA
    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

    teen with LGL
    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
    mama c Member Posts: 5
    mklein said:

    teen with LGL
    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.

    LGL
    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
  • meerkat26
    meerkat26 Member Posts: 2
    alexapr07 said:

    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!

    Large T Cell Leukemia
    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.
  • meerkat26
    meerkat26 Member Posts: 2
    I understand what you mean.
    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.
  • mklein
    mklein Member Posts: 2
    mama c said:

    LGL
    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

    LGL
    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
    kevinfrich Member Posts: 2
    mklein said:

    LGL
    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

    LGL Treatments
    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
    mama c Member Posts: 5
    mklein said:

    LGL
    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

    LGL leukemia
    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
  • mama c
    mama c Member Posts: 5

    LGL Treatments
    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.

    LGL
    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
  • lbishop52
    lbishop52 Member Posts: 1

    LGL Treatments
    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.

    T-Cell LGL Diagnosis
    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
  • sunnyd1975
    sunnyd1975 Member Posts: 1
    LGL Leukemia
    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