Lgl Leukemia Looking For Others To Talk To

Hi  my name is Gail and I am trying to find other people with Tcell Lgl leuekemia, my son was just dx with it 3 weeks ago and we are pretty shocked and would love to hear from others who suffer from this and have any insight or suggestions on treatment, nutrition, and emotional support.

 

On 3/6/2008 worriedsickmother wrote:

Hi  my name is Gail and I am trying to find other people with Tcell Lgl leuekemia, my son was just dx with it 3 weeks ago and we are pretty shocked and would love to hear from others who suffer from this and have any insight or suggestions on treatment, nutrition, and emotional support.

 

 

On 3/6/2008 worriedsickmother wrote:

Hi  my name is Gail and I am trying to find other people with Tcell Lgl leuekemia, my son was just dx with it 3 weeks ago and we are pretty shocked and would love to hear from others who suffer from this and have any insight or suggestions on treatment, nutrition, and emotional support.

Hi Gail:  I am not familiar with the type of Leukemia you mentioned, but I think anyone dealing with Leukemia needs emotional support. My Leukemia is CML, and I am 60 years old.  I was diagnosed in 1998.  I hope that gives you some comfort in knowing that Leukemia is not what it was years ago.  So much is being done these days, especially if you are young.  You did not mention the age of your son.  If you need someone to talk to, please send me a e-mail.  I would be glad to respond anytime.  I pray your son does very well with proper treatment.  That is the key to it all.  Be sure you get 2nd and 3rd opinions.

                                                               God Bless You

Hi there thank you so much for replying to my message, and it is encouraging to hear from you. My son is 22 and his leaukema is a rare type and am told that it usually shows up in much older people. He has been on the chemo pill for 2 weeks now and we just had our first blood draw yesterday. This is all so new to me and him that we are still in a bit of shock i suppose. I am 42 with four children total. would love to talk and share with you and I hope all is going well with you, I am not familar with your type, but will be here for you to talk to , and learn all that I can about this disease. Once again thank you for responding it made my day.

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Please don't rush into conventional treatments. Look at all the options like alternative cures. It is a lot better.

thank you all for replying, i am researching evrything there is toknow about this disease, and right now he is on the chemo pill had three doses so far . We go back to the docter in 2 weeks . So I guess I will find out more then. This is just so strange and new for me, and I worry because my son is only 22 and everyone keeps telling me that his type usaully doesn';t show up in young people. Well thank you for the message and I hope all is well with everyone out there that has this and I pray for all and will definetly be checking on this page regarely to read about you all.

My friend was recently diagnosed with LGL and she is only 35 years old. She was also told that this is rare for someone her age. She is going through her second bout with chemo, and she also has to get blood transfusions regulary. I was hoping to get some info. from others that have gone through this sort of treatment. She's not the type to ask the doctor's what all of her test results mean, so my husband and I were hoping someone who is going through something similar could help. If anyone knows more about this disease and what "blood numbers" we should be paying attention to, please post. Thanks!

 

 

I was first diagonosed with T cell in April of 2004, after I had my spleen removed.  Was treated with methotrexate and prednisone for the first six months, then methotrexate alone for the next 6 months.  I was tired all the time, had mouth sores, joint pain and general just didn't feel well.  The disease was what they call "Quiet" for most of 2005 and 2006, but acted up again in December of 2006.  In February of 2007, I was put on Cyclosporine(Gengraf) with prednisone, and am still on it.  In Ferbruary of this year, I had my first real issue with having a suppressed immune system.  I was hospitalized with pneumonia for 8 days.  But have recoverd well.  Unfortuantely, my neutrophils are only at about 520, so I have had a bone marrow test and may have to revise my treatment plan.  In between all this, the medication has caused my blodd pressure to elevate and I have had to motior my blood sugar.  For the most part I feel good, but i get tired and my joints and muscles ache often.  Ihave gotten used to a lot of it and thankfully have missed a minimal amount of work.  The disease itslef is not life threatening, it's not having a fully functioning immune system that is the bad part.  By the way, I am currently 58 years old, and if I follow the doctors orders, he sees no reason why i shouldn't live a long and productive life.

You and your family will be in my prayers.  It may be a rare disease, but you are not alone.

 

 

 

 

On 4/7/2008 yankeeguy101 wrote:

I was first diagonosed with T cell in April of 2004, after I had my spleen removed.  Was treated with methotrexate and prednisone for the first six months, then methotrexate alone for the next 6 months.  I was tired all the time, had mouth sores, joint pain and general just didn't feel well.  The disease was what they call "Quiet" for most of 2005 and 2006, but acted up again in December of 2006.  In February of 2007, I was put on Cyclosporine(Gengraf) with prednisone, and am still on it.  In Ferbruary of this year, I had my first real issue with having a suppressed immune system.  I was hospitalized with pneumonia for 8 days.  But have recoverd well.  Unfortuantely, my neutrophils are only at about 520, so I have had a bone marrow test and may have to revise my treatment plan.  In between all this, the medication has caused my blodd pressure to elevate and I have had to motior my blood sugar.  For the most part I feel good, but i get tired and my joints and muscles ache often.  Ihave gotten used to a lot of it and thankfully have missed a minimal amount of work.  The disease itslef is not life threatening, it's not having a fully functioning immune system that is the bad part.  By the way, I am currently 58 years old, and if I follow the doctors orders, he sees no reason why i shouldn't live a long and productive life.

You and your family will be in my prayers.  It may be a rare disease, but you are not alone.

 

 

 

 

Hi there, thank you for all the information and most of all for replying to my message. I am so pleased to hear that you are doing well and that you are so postive about all that you endure. Your reply made me feel better and more hopeful. This is all so new to us and I know every patient is different. My son is 22 and has been on the methotracate for 5 wks now, all in all he is doing good, just feels tired and achey and loss of appetite some days, but others he feels fine. His doctors say that he will have to have a bone marrow or stem cell transplant in about 5 or 6 years, but for now his numbers all look good and the pills are working and for that I am thankful. I suppose it's the fear of the unknown that gets me and that this just came at us out of the blue. But I am learning all that I can about this disease from all that I can. I was wondering how your other organs were doing after the spleen removal, my son's spleen is still a lil enlarged right now and have read that if you have your spleen removed then you have trouble with your liver and kidneys. Is that the case for you? Well again thank you for the info and for sharing your story with me I am very grateful for your reply.

 

You too will be our prayers and it is a comfort to know that we are not alone. God Bless