LGL T-Cell Leukemia

DevonLea said:

There are people here if

There are people here if you need to talk or anything, write me a message. I am a 30 year old survivor, in maintance chemo now, until march of 2014.

my mom has lgl  and she told me last night she thinks even tho she was told she had it about 3 years ago she thinks she has had it for 17 years  do you know of any long living ppl with this

Well, It's been over a year since my diagnosis. After a couple of different types of therapy; cylcophosphamide, methotrexate and now cyclosporine my hemoglobin is at 12-13. Way better than it was when first diagnosed. I have light years more energy and stamina. I feel that I can do almost anything I was doing  three years ago. I can say this for sure, my prognosis si good because of the will of God thousands of prayers by many and sheer will and medical science. In that order!

I have to say that my outlook on life is much different than a year ago. I don't take anything for granted.

ronb59 said:

Doing much better

Well, It's been over a year since my diagnosis. After a couple of different types of therapy; cylcophosphamide, methotrexate and now cyclosporine my hemoglobin is at 12-13. Way better than it was when first diagnosed. I have light years more energy and stamina. I feel that I can do almost anything I was doing  three years ago. I can say this for sure, my prognosis si good because of the will of God thousands of prayers by many and sheer will and medical science. In that order!

 

I have to say that my outlook on life is much different than a year ago. I don't take anything for granted.

I am 59 and I was diagnosed with T-LGL in Sept. 2013 after landing in the hospital with an internal rectal infection, where they discovered I had an ANC of 0.

Through neupogen and neulasta shots, I was able to boost the ANC level back to normal range, but it has been a struggle. My local doctor wasn't watching me close enough, and in Dec. I ended back in the hospital again, this time with an ANC of .2 and an infection caused by pseudomonas. I have a large wound on my neck from it that is still healing and requiring daily attention.

I had made an appointment to see Dr. Loughran back in Oct., but due to his schedule, I couldn't see him until just yesterday. I got frustrated with the lack of direction and called Dr. Loughran's office and my local doctor and told them both I wanted to start the treatment ASAP. On 12/7/13, I started the 20mg of Methrotrexate. I don't see any noticeable results yet (take my 6th dose tonight).

I visited Dr. Loughran yesterday at UVA. I didn't learn significantly more than I already knew, except he said Metho could take up to 4 months to be effective. And if not, we switch to Cytoxan and then to Cyclosporine.

It's been a mental and physical struggle for sure, as others have stated.

I get periods of nausea, which Dr. Loughran said is probably from the Metho. My energy level vascillates wildly. Each day is an adventure: am I going to have energy, am I going to be nauseated, or is it going to be a "good day"? I can't wait for these drugs to start taking control.

Meanwhile, I'm getting CBCs done weekly so I can monitor my ANC level. When it goes below 1, I get a neulasta shot, which fortunately for me, does boost my counts.

bendanyh said:

Sharing my situation

Hi paulbib,

I got T-Cell LGL Leukemia too. I'd like to share my situation:

http://csn.cancer.org/node/268011#comment-1472941

Thanks.

hi, I'm new to here. I'm a 58 year old male who was finally diagnosed with LGL two months ago. I had been suffering from mouth ulcers for years and when I went for a hip replacement last year my WBC count was 1.5 and my neutrophils between .1 and .6 terrible. I then suffered a series of infections ranging from staph on my hands to a rectal abscess that required three lots of surgery. I was started two weeks ago on Neulasta ( pegfilgrastam) to stimulate white blood cell growth.  Dramatic improvement, my WBC count went to 13.7 my neutrophils to 9.9 with no side effects. My heamatoligist thinks I will get down to one injection every two weeks. My oncologist treated a lady this way for 18 years before it stopped working. Early days but I'm extremely happy and relieved.

My father was diagnosed with T-LGLL last year in mid-August. He is 79, at the time of diagnosis he did not have any symptoms, but his CBC was abnormal. He started on Methotrexate (MTX )15 mg /weekly and after the first dose he had a huge drop on his Hbg (from 8.1 to 5.3). He has been on MTX for 4 months and his doctor increased his dosage from 10 mg to 20 mg after 2.5 month. While he has been on MTX he also gets blood transfusions every 2 or 3 weeks depending on his HGb level (he gets that when his HGB below 8).

Even though his doctor added Aranesp (darbepoetin alfa) injection 200 mcg every other week for the last 2 months, his Hgb has not shown any improvement. He is very dependent on blood transfusions which he hates a lot and his doctor is also concerned about the Iron overload.

Last month he showed some partial improvement on MTX (Has not had any transfusions for one month) but then his Hgb dropped from 8.1 to 6.5 in 1 week.

I would really like to know if any of you have the same story and how/ what you did to help with Anemia caused by T-LGLL. Is it too soon to change to Cytoxan?