Lgl Leukemia Looking For Others To Talk To

On 4/7/2008 worriedsickmother wrote:

 

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

My name is Adrienne and I live in New Zealand.  I was diagnosed with LGL leukaemia 5 years ago.  I only began treatment after I started picking up infections.  I've been on two treatments - first methotrexate and secondly cyclosporine.  As one of the previous respondents said, the condition is nott life-threatening butwitha depressed immune system you are vulnerable to infection.  I take every sensible precaution but otherwise jsut get on with living.  Both treatments I was on have been trialed and shown a 50% success rate.  I wish you son well with his. 

Alngside the more traditional treatments I visit a naturopath and take immnue-boosting supplements.  I think of myslef as a well person who gets an occasional hiccup.

 To ease my isolation I registered on the Thomas J Loughran LGL registry.  Dr Loughran is the world authority on this condition.  If you google his name you will find helpful articles and details of how to be included on the registry.  I wish your son well.

 

 

 

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