Does Anyone Know Anything About T-Cell Lgl Leukemia?

I was just diagnosed with T-cell LGL Leukemia. I have heard this is very rare and have a lot of questions.

Ran into an old message on a cancer board about t-cell lgl leukemia. Just diagnosed in oct.
Linda

I have LGL also. But after doing a little looking the info I found
reduced my concerns and have been busy working, Christmas
season, and am just beginning to get involved again.

Found quite a bit of info just Googling "LGL Leukemia"

I am asymptomatic. 64 years old. Like some people on other
sites, I have probably had it for 3-4 years but just decided to
spend the money (no insurance) to find out why my blood work
had been so strange during check ups for several years.

I am waiting until I turn 65, medicare, to start any treatment.
Just doing a CBC every 2 months to make sure it is staying in
the "lazy cancer group."

What's your status, LGL wise?

Barry

I have been on treatment for LGL Leukemia since January '05. I am 41. They say I have had it maybe a couple of years, I suffered from anemia, extreme fatigue, chronic infections, my understanding is that it is supposed to be asymptomatic but I also have ringing in my ears 24/7 and night sweats. I can't seem to find much about it. I was just diagnosed in oct. 04, hopefully I will get more understanding soon.
Linda

nice to meet you

What are you questions? Here is somthing I posted about 3
weeks ago.

Hi

I thought I should post this FYI. This is a copy of something I
put on a website group.

I have a more rare form of T-cell cancer call Large Granular
Lymphocyte. It is one of the
lazy, indolent or smoldering types (don't you love the
vocabulary), with a mean time to death of greater than 10
years. I would be expected to die of some opportunistic
infection because my neutrophils keep getting lower and lower
(<500 is a problem). The neutrophils are the
infection fighting white cells. Due to treatment
costs, no insurance and only being 64 so no Medicare yet, and
my neutrophil count not being that bad yet (about 800, half of
normal) I have been delaying any treatment. I paid the $2,000
to have all the bone marrow tests that confirmed my condition
about 4 months ago. I have had low neutophils for about 3
years. But a strange thing has happened while waiting to turn
65 and starting treatment. My last CBC was normal, the first
time in three years. Could be an error; I'll wait a month a do it
again.

But I did experiment, on my own, no doctor involved, by taking
an overdose for a few days
of curcumin. This is the yellow color in curry that some
speculate is the reason there are
less leukemia of many types in India. The bottle said don't
take more than 5 per day. I took
6 twice a day for 3-4 days and then 2 twice a day for a month.
Then got another CBC. This is all very curious to me
since I was overworked and stressed out during my Christmas
season at work to the point
I had a panic attack. To get better under stress is a little
amusing. But something has
changed and thought it should be reported.

An electrical engineer into “efficiency” with a sense of humor
about having "indolent" cancer.

Barry G, Cotati, CA
--
Plan on getting my next CBC next week.

There is lots of info on the internet.

Here is some stuff.

http://cancer.gov/clinicaltrials/ECOG-5998

http://curezone.com/forums/m.asp?f=254&i=2472

http://www.mskcc.org/mskcc/html/5477.cfm

http://www.thedoctorslounge.net/oncolounge/forums/
viewtopic.php?
p=9025&sid=985e19d5823759a58503a5e596fb1a87#9025


http://www.merck.com/mmhe/sec14/ch179/ch179b.html

http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/
forumdisplay.cgi?
action=topics&forum=Newly+Diagnosed&number=1

My main questions are about symptoms and what to expect. I have had no success in speaking with some one with this condition. I get extremely fatigued. My ANC is 900. I get mixed signals because sometimes I'm told not to worry about it and than when I take it lightly I'm told to be more careful. I went to see Dr. Laughran at Heshey Medical and he told me to get good care and follow up that infection would be my main concern. I have a very stressful job and work at a hospital (where very nasty germs live) I work with contact isolation patients and my doctors don't seem to be very concerned. I feel vulnerable to this disease but given no direction on how to keep myself healthy given my situation. I think sometimes if I get something it's going to be to late to attack it. Any suggestions to ease my mind. I'm told this isn't terminal but than I read stuff and it says 10 years, why? Is that from the disease or is that how long it takes for your body to catch something it can't fight? Thanks

Hi Linda S.

Since I am asymptomatic and have only had it for a few years I
can't be of much help. I have seen messages from people who
are younger than me and are having troubles. They mention
infections and blood transfusions.

I too am occasionally fatigued but it varies a lot and I am not
sure it has anthing to do with the LGL I feel that my cortisol
levels may
have been reset by use of caffeine for too many years. One day
I'll play three sets of tennis and still feel great all the rest of the
day; the next day I'll take out the garbage an feel exhausted --
weird. I am a believer in experimenting with my hormones
(take pregnenolone), doing calorie restriction, and Paleo
dieting.

If your neutrophils are 900 I'd relax, and just get tested
regularly. At 600 you might want to discuss treatment
(methotrexate, and others). At 400 i'd find another place to
work. If my next blood test comes back like my last one I'll let
you know. You might want to try the curcumin then.

I have had a couple of colds in the last two years but beat them
in good time with no trouble.

Yes, some infection is what kills you, like having slow motion
AIDS.

I find the 10 year thing a little humorous. The average age of
getting this is 62, add 10 years and you get 72. Being a male,
that means I have lost 6 years on average. I would be a lot
more frightened if I had diabetes.

I have had this lgl for 12 years and am still going strong, I do everything I can to take care of myself. I have that same ringing in the ears stuff, perspiration and weakness. I am doing better with it today. Please respond if you would like.

Update on Curcumin and Absolute Neutrophils (ANC).

After waiting a month and taking very little Curcumin I got a
new CBC. This time it looks like my blood work and better
than it has looked in some time! The one before this one
looked perfect and I was very suspicious of it. I think the
philbotomist (spelling) just mixed up my blood with someone
elses.

The good new is everything is better. My ANC jumped from
800 to 1300. Two other parts of the CBC that were out of
tolerance are now normal and three or 4 other readings that
were out of tolerance are closer to normal. So now I am going
back on the curcumin and waiting two more months.

My wife recently had a bad cold, the worst one in years for her,
and I didn't get it. Yea.

I too have ringing in my ears. Mine changes from day to day
and is worse when I am inactive and laying down.

Best to you all. Barry G. in
Northern California.

Dealing with the ears has been my primary complaint along with the fatique. Dr. Loughran had asked me if I had come across with any other LGL sufferers with this complaint. Dr. L. and my local hemetologist don't think it is related. What have you done for the ringing in your head and are you ears full all the time? Mine feel like I just stepped off an airplane.
The ENT says it can be related to the blood disorder. How have you dealt with the fatique? I have been very frustrated because my endurance kept going down. I was accustomed to running a few miles daily,workaholic and active everywhere else, I'm trying to look at it as a positive for slowing down but I think guilt gets the best of me. like I should be doing more. Any words of advice would be apppreciated. Thanks, Linda