T-cell LGL Lmphocytic Leukemia.

Hi Jerry,

How are you feeling these days and how has the T-Cell LGL progress? I read your message for the first time today and I was just diagnosed  today with T-Cell LGL. I am a 44 year old married women with 3 kids and one of them is only 4 years old. Please share your progression with me and give me hope. I am so scared and I don't understand how I got this? 

 

 

On 5/20/2009 Jesus Lives wrote:

Hi Jerry,

How are you feeling these days and how has
the T-Cell LGL progress? I read your message for the
first time today and I was just diagnosed  today with T-Cell
LGL. I am a 44 year old married women with 3 kids and one of them
is only 4 years old. Please share your progression with me and
give me hope. I am so scared and I don't understand how I got
this? 

 

I'm
doing well, thank you. I'm sorry for your recent diagnosis but you need
to trust that you WILL BE OK....I too have three children (the youngest
being six yrs old) and am confident that I will be around to raise and
love them for many years to come. The natural thing to do when first
diagnosed is to jump on the internet and read up on your condition,
which is exactly what I did. However, for all the good that researching
the internet can provide to you, it can also make you sick with worry.
As for the 10yr life expectancy----I'm not buying that NOR SHOULD YOU!
The important thing is to remain positive and make sure that you have a
doctor that will be aggressive and stay on top of your bloodwork and
any treatment that you need now or in the future. This typically, is a
slow progressing disease so be strong and keep the faith. I'll keep you
in my prayers. If you have any other questions that I may be able to
answer, let me know. Also keep in touch and let me know how you are
doing. God Bless.........

 

HI, I posted more imfo to others on this site, please take tke time to find my imformation. Longbow 

Hi, I am 45 and have only been recently diagnosed with LGL.  Prior to that they thought it was Myelodsplasia.  Now I know the symptoms I realise that I have had this for at least a couple of years.  I just thought I needed to do more exercise and get fitter.  Had a lot of breathlessness too. The first transfusion changed all that!!  I know when my bloods are getting low cos my legs hurt and my heart pounds! Have only just started on the prednisone and methotraxate, so dont know how well I am on that yet.  How are you doing now?

Hi Sallie,

I have  been on Methotrexate for about a year, have seen some improvement, but not as much as I had hoped. My ANC was .5 yesterday. Still feel very tired and sleep alot. The Doctor is keeping a close eye on my liver and I will stay on the Meth as long as I can. There is some nausua and assorted aches but not too bad. Good luck with your treatment, others have had good results within one year.  I am not sure why the prednizone but, we all have different blood issues that are sometimes handled per individual case.  Keep me updated and hope you stay well.

TjTeresa