T-cell large granular lymphocyte leukemia

Hi..I -

I have been Dx with T-cell LGL.  I am a Vietnam Vet and I would like to hear from other Vietnam Veterans with this disease.

Deac1

I have been diagnosed with T-cell LGLL for 6 years. I was told by the hematologist that I was the first to be diagnosed at M.D. Anderson in Houston. After 5 bone marrow biopsies/aspirations, each performed at a different cancer center, M.D. gave me the diagnosis. Since then, they tell me many more have been diagnosed.  My spouse and I went through a grieving panic period, then a constant researching period, and now we just follow the doctors directions up to a point. The reason I say this is because you feel like you get lost in the shuffle and placed over there on a shelf. There are no clinical trials for this type of Leukemia and because it is a slow type of cancer, there won't be very many options for keeping it at bay. So we do a little extra searching and sometimes get other opinions.

My treatment started with high doses of prednisone and methotrexate. Now for the last 3 or more years I have been on cyclosporin of up and down doses being judged by the platlet count. I am currently seeing an geriactric/internist/retired oncologist. He has ordered me to stop taking all of my prescriptions, other than the cyclosporin, and take 300mg of CO Q10, 3,000mg of Loraza (fish oil), vitamin C. I am a 56 year old menopausal female having sleep problems, muscle/bone pain, emotional ups/downs, hair loss, and ect!  I take meds for that stuff. He believes that eating a balanced  diet requires no vitamins. I have trouble eating what I need and will go all day not wanting to eat. I will drink veg. juice and eat high protein bars on these days. Also, I drink Boost.

I check in to the message board occassionaly to see if there are those with new ideas and so I decided to tell my story and not knowing if I could be of any help but someone might need another person with this to just talk to. I no too well that a good mental and spiritual connection help keep your head above the water.

sewpoke

My mother is 69 and has had low neutrophils for 10 years but was only diagnosed last year as T-cell LGL.  Infections were occuring more frequently & her doctor tried Methotrexate with Prednisone.  This seemed to make her worse so took off and referred to Stanford Med. Center in California.  They confirmed diagnosis but are not currently studying the disease - it is very rare?  They recommended Cyclosporine but she decided to wait and see.  There is another option Cytoxan - anyone using it?  The last six months have been constant infections & she is very weak so she is ready to try Cyclosporine.  I am just looking around for alternatives and others who have had similar treatment.  Thanks for sharing your experience.  

My Dad just received his blood results and they confirm he has T-LGL. I do not live in the area and only get information passed to me by him or my mom so as you can imagine its not quite coherent at this point. I do know that 3 weeks ago his lymphocyte count (or something like that) was 37% and this time it went up to 42%. Can anyone help me interpret this information I really can't find much information online or can't exactly figure out the right search words (help with this would be appreciated also). Also there was something about no B something (not very descriptive I know). And finally not that anyone really wants to discuss this but how long do I possibly have with him? Any response would be extremely appreciated.

Thank You

 

On 10/26/2008 sewpoke wrote:

I have been diagnosed with T-cell LGLL for 6 years. I was told by the hematologist that I was the first to be diagnosed at M.D. Anderson in Houston. After 5 bone marrow biopsies/aspirations, each performed at a different cancer center, M.D. gave me the diagnosis. Since then, they tell me many more have been diagnosed.  My spouse and I went through a grieving panic period, then a constant researching period, and now we just follow the doctors directions up to a point. The reason I say this is because you feel like you get lost in the shuffle and placed over there on a shelf. There are no clinical trials for this type of Leukemia and because it is a slow type of cancer, there won't be very many options for keeping it at bay. So we do a little extra searching and sometimes get other opinions.

My treatment started with high doses of prednisone and methotrexate. Now for the last 3 or more years I have been on cyclosporin of up and down doses being judged by the platlet count. I am currently seeing an geriactric/internist/retired oncologist. He has ordered me to stop taking all of my prescriptions, other than the cyclosporin, and take 300mg of CO Q10, 3,000mg of Loraza (fish oil), vitamin C. I am a 56 year old menopausal female having sleep problems, muscle/bone pain, emotional ups/downs, hair loss, and ect!  I take meds for that stuff. He believes that eating a balanced  diet requires no vitamins. I have trouble eating what I need and will go all day not wanting to eat. I will drink veg. juice and eat high protein bars on these days. Also, I drink Boost.

I check in to the message board occassionaly to see if there are those with new ideas and so I decided to tell my story and not knowing if I could be of any help but someone might need another person with this to just talk to. I no too well that a good mental and spiritual connection help keep your head above the water.

sewpoke

 

I was diagnosed with T-cell LGL abut 9 years ago.  I was pretty much non-symptomatic until last year, when I started having muscle weakness in my legs and fatigue. My doctor put me on Cyclosporin for 3 months to see if that would help.  I didn't see much change.  You indicated that you have joint and muscle pain, I would be curious to know if you also experience muscle weakness. 

 

On 12/22/2008 andrewroy wrote:

 

On 10/26/2008 sewpoke wrote:

I have been diagnosed with T-cell LGLL for 6 years. I was told by the hematologist that I was the first to be diagnosed at M.D. Anderson in Houston. After 5 bone marrow biopsies/aspirations, each performed at a different cancer center, M.D. gave me the diagnosis. Since then, they tell me many more have been diagnosed.  My spouse and I went through a grieving panic period, then a constant researching period, and now we just follow the doctors directions up to a point. The reason I say this is because you feel like you get lost in the shuffle and placed over there on a shelf. There are no clinical trials for this type of Leukemia and because it is a slow type of cancer, there won't be very many options for keeping it at bay. So we do a little extra searching and sometimes get other opinions.

My treatment started with high doses of prednisone and methotrexate. Now for the last 3 or more years I have been on cyclosporin of up and down doses being judged by the platlet count. I am currently seeing an geriactric/internist/retired oncologist. He has ordered me to stop taking all of my prescriptions, other than the cyclosporin, and take 300mg of CO Q10, 3,000mg of Loraza (fish oil), vitamin C. I am a 56 year old menopausal female having sleep problems, muscle/bone pain, emotional ups/downs, hair loss, and ect!  I take meds for that stuff. He believes that eating a balanced  diet requires no vitamins. I have trouble eating what I need and will go all day not wanting to eat. I will drink veg. juice and eat high protein bars on these days. Also, I drink Boost.

I check in to the message board occassionaly to see if there are those with new ideas and so I decided to tell my story and not knowing if I could be of any help but someone might need another person with this to just talk to. I no too well that a good mental and spiritual connection help keep your head above the water.

sewpoke

 

I was diagnosed with T-cell LGL abut 9 years ago.  I was pretty much non-symptomatic until last year, when I started having muscle weakness in my legs and fatigue. My doctor put me on Cyclosporin for 3 months to see if that would help.  I didn't see much change.  You indicated that you have joint and muscle pain, I would be curious to know if you also experience muscle weakness. 

 

My husband was diagnosed with T-cell LGL a year ago but has probably had it for 5-6 years.  For a long time the only symptom he had was an enlarged spleen.  Now he has transfusiion dependant anemia.  Methotrexate brought his granulocyte count up but did nothing for his anemia.  We will now try cytoxin.  He can't take cyclosporin because he is diabetic and that is hard on your kidneys.  I did learn, however, when you take that drug you need to be on erythropoetin as well because of the decrease in function of your kidneys.  I would certainly recommend you see a hematologist for your treatment.  Oncologists are great but they are used to seeing solid tumors and are not familiar with leukemias/lymphomas.  I too wish there were more studies being done to help with this disorder.  We have a friend here who has the same diagnosis; his counts are fine but he suffers terribly with rheumatoid arthritis which is also associated with LGL.  Good luck.  I'll keep checking the wed-site for news.  Lin S

Hello to all of you who have, or a companion has, T-Cell LGLL~~~

My husband, now 78 yrs old, was diagnosed with T-cell LGLL about 3 years ago. He refuses chemotherapy. He doesn't agree with making the body weaker to fight a disease that is doing its best to kill you. He faithfully takes Essiac Tea and multiple vitamins and minerals, maitake mushroom, arteminisin,& a few other things that I don't remember are on the list. He has had bronchitis, and pneumonia and then has taken an antibiotic. Any infection is difficult to fight off because of the changes in the blood cells. He only sees the oncologist every 3 to 6 months; but has regular visits every 2 months with his regular MD who is aware of the disease.

 Other than that he is in good health, but a bit "weak in the knees" at times. He has worked on various jobs thru this period and is of good spirits. Whenever he has felt weaker than usual he increased his doseage of Essiac Tea. He is now taking approximately 18oz a day. If you want to contact him regarding any of this you may do so at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

. We certainly do WISH YOU ALL, AND ANYONE with the disease to be of the best cheer you can be. Life is not easy at best when we get older, and this disease is at times not easy to deal with, but we have managed these 3 years and hope to continue to do so.

If you are a caregiver: take care of yourself. If someone will give you a "break", take it! Even the grocery shopping and being out and around helps your spirits when you have so much to cope with at home. Enjoy the sunshine, the trees, the birds, anything that helps you smile or relieve your mind and emotions for just a brief period of time. Write a journal, paint, sew, knit, take a walk!..do what is good for you and you will be good to the invalid in the household. Pray for peace of mind and a gentle spirit.

I have  just been diagnosed with Large granular lymphotic leukemia. In Feb Ihad a rountine blood test and my white cell infection fighting cells were 0. should be1500 to 2000. The dr.took me off of plaquenell that I took for RA.. Did not help. Had bone marrow test and lots of blood tests, the went an had an iv of gamma globulin that took 8 hours.  It brought it up to 700. So he gave me a shot of pegogen not spelled right, went bak in a week and it had come from 700 dwn to 400.  Now I am on cyclosporine and cytoxan.  I go b ack in 3 weeks to see if this brings my white fighters up.  I have felt fine and had no symptoms, if not for the routing blood test I would not know anythng was wrong....but they tel me I cnanot have zero white infection fighting cells or I will end up sick

 I went thru shock , and fear at the bone marrow test, and now also at these drugs that read like they can cause all kinds of things.. If my count does not come up in3 weeks, I am going to scream.

  thank you for listening

Hello again,

Here is an update on my now 70 year-old mother who was has had this condition for about 10 years but just diagnosed in the last 3 years.  Her experience with Methotrexate was not successful in the past.  She tried Cyclosporene this year & it did not show results to warrant the awful side effects.  She was taken off Cyclosporene due to red blood cell decline - but seems a little too late as she ended up in the hospital very ill with a fever & anemia for a few nights.  She was given antibiotics & a blood transfusion while there.  She has been out of the hospital for a couple of weeks but antibiotics caused several fungus & bacterial side-effects so has been taking something for those & is just now feeling a bit better.  She is very weak & has lost a lot of weight since the Cyclosporene experience.  Her appetite is back & her white blood cells are actually ok for her right now so she is feeling better & her doc is not recommending anything but ready to start Cytoxan if things decline again - argh - so we have set up an appointment with an MD who specializes in complementary/integrated holistic medicine & geriatrics - I will keep you posted.  Thanks for sharing your experiences too.  

God Bless you and your Mother...please keep us posted!  You are in our prayers...

Sharon