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T-Cell Large Granular Lymphocytic Leukemia

cancerspancer
Posts: 5
Joined: Oct 2011

I was diagnosed 2 years ago with T-Cell Large Granular Lymphocytic Leukemia. I am 44 years old and haven't found a whole lot of information. I am on a weekly low-dose (12.5 mg) of Methotrexate and have pretty much plateaued. I would love to hear from someone who is in the same situation.

drtba
Posts: 7
Joined: Oct 2011

I was also diagnosed with LGL leukemia about 3 years ago. I am a 64 year old physician, so I have some insight about the disease. The consultants were initially concerned about myelodysplastic syndrome which can progress to acute leukemia, but consultants at the Mayo Clinic in Rochester diagnosed LGL disorder, and Dr Thomas Loughran in Hershey, PA, the physician who originally discovered the entitiy of LGL leukemia, confirmed the diagnosis.
I presented with exertional shortness of breath and fatigue associated with anemia(low red cells) with lowest hemoglobin 10.3(normal 13-18), neutropenia with lowest absolute neutrophil count 300(ideal greater than 3000-3500) and mild thrombocytopenia or low platelet count at about 90,000(normal greater than 130,000). I had increased lymphocytes in my white blood count due to the increased production of the abnormal clone of T cells by the bone marrow(T cell leukemia).
I have also taken Methotrexate for about 1 1/2 years at a relatively high dose of 20mg by mouth weekly, with mild intermittent nausea,mild headaches,and some minor weight loss. It took about 6-8 months of methotrexate, before I saw a response of my blood counts. My blood counts are at or near normal, including the absolute neutrophil count that has climbed to 1500(hopefully less risk of serious infection).
I have been encouraged that should the blood counts deteriorate again, I would be candidate for another immunosuppressive agent Cytoxan, then potentially Cyclosporine, and if that didn't work then experimental treatment like Campath. I am generally pleased by my course in that I am back running and less fatigued, but have to put up with the side effects of the medicine. I am reassured that the prognosis is relatively good,the disease is unlikely to ever progress to acute leukemia, and additional treatment will be available if needed.
I am interested if there are any LGL leukemia patients out there with immediate family members with rheumatoid arthritis. I find it interesting that my wife developed progressive RA at about the same time I developed LGL leukemia. These diseases are frequently seen in the same individuals, but I haven't seen reports of associations in immediate relatives especially spouse(could there be an infectious agent or other antigen we both came in contact with?)

cancerspancer
Posts: 5
Joined: Oct 2011

Thanks for your reply. We have similar stories. I went to my family doctor because I had always been an easy bruiser, but I also had extreme fatigue (didn't want to even hold a glass of water.) Everyone was telling me I looked tired and I was also having recurrent yeast infections. My initial CBC showed I had Macrocytic anemia and I was referred to a hematologist/oncologist and was questioned whether I was or had been an alcoholic or drug addict. Answer to both, 'No!' Over the course of a year I had about 6 more visits and lots of blood work, a bone marrow biopsy (to rule out myelodysplastic syndrome) and a 2nd opinion at IU Medical Cancer Center, then I got my diagnosis and started on 7.5 mg of methotrexate. I am now at 12.5 and have stopped making any progress. My blood work from yesterday shows my Abo****e Neutrophil count at .7 (or 700, I guess). Lymphocytes are high and RBC is low. My Platelet Count and Hemoglobin are currently okay.

My doctor is letting me decide whether I want to switch to another drug, based on how I'm functioning. Right now I'm still working full-time, am a wife and mother of 3. With enough sleep, I'm able to keep going, so I'm going to stay on methotrexate to keep things less complicated, but it's nice to know there are options. I was told I tolerate the fluctuations better as a younger person, but if I were older I would have more trouble. I try to not think about it, but when you get blood work every month and see a cancer doctor every other month, you can't stop thinking about it. I'm always just going from one report to the next. I am a Christian, and without God on my side I'd be a mess.

Thanks, again, for your reply. It was nice to hear from someone with relatively the same circumstance as myself. And thanks for being positive! We're going to make it!!

Oh, and my mother has RA. Coincidence??

drtba
Posts: 7
Joined: Oct 2011

Yes,your story is very similar to mine. It's good to know there is someone out there experiencing the same emotions and a similar course. We will get through this. When I started Methotrexate the goal was 10mg/meter square. For my size of about 180 pounds and 73 in. the goal was 20mg per week. I wasn't seeing much of a response to my blood counts until I was up in the range of 17.5 to 20 mg per week for several months. Meter square determinations can be done by using height and weight tables. You need to discuss this with your hematologist. Dr. Loughran encouraged me to forge ahead to the goal and it seemed to work. He also stressed that I should not stop the Methotrexate if I had a reasonable partial or complete remission, i.e. don't stop and try something else if you seem to be seeing a response unless the side effects are troublesome or toxicity is occurring. He stressed that the counts decline rapidly when the Methotrexate is stopped. Again, you need to discuss this with your own doctor.
By the way, the French published their experience with LGL leukemia in the past year in a review article, and they confirmed the relatively good prognosis in their patients(I think it was around 200 patients) You can probably find it on the web.

cancerspancer
Posts: 5
Joined: Oct 2011

Thank you, I found the report!

drtba
Posts: 7
Joined: Oct 2011

See above, the message board is very slow and the message was submittted multiple times and slow to load.

drtba
Posts: 7
Joined: Oct 2011

See above

drtba
Posts: 7
Joined: Oct 2011

See above

drtba
Posts: 7
Joined: Oct 2011

See above

drtba
Posts: 7
Joined: Oct 2011

See above

etvlife
Posts: 1
Joined: Oct 2011

My story is the same as everybody else here, my LGL was only diagnost after several blood test and one of the blood specialist at HUMC, NJ is a former student of Dr.Loughran of Pa.He explained how this disease progress to anyone.First of all. right now its still considered a rare disease.
I am also put under methotrexate medication (8 x 2.5 mg/week). The prognosis is good ,after only one week my wbc went up to about 1300.I am still working full time, by the way I am 61 yrs. old ,petroleum lab. tech. for 35 yrs. now.
There are so many good news about how to control this disease, its only a matter of time before a cure will be discovered.Right now just have faith that what ever our doctors are prescribing is knowledge coming from God.Believe, have faith and trust your doctor.
The fact that you are reading this means there is great hope that we will survive this for a long long time.
God Bless you all.

Elis59
Posts: 1
Joined: Feb 2013

A little background: I was given a "suspected diagnosis" of LGL about 25 years ago. My hem/onc at the time told me that it was indolent and I shouldn't worry about it unless symptoms arose. Three years ago I developed an enlarged spleen, knock-out fatigue, and some other crazy blood counts. Oral methotrexate had no effect so i just asked if the spleen could be removed. That was done and since that time I have had periods of profound fatigue alternating with periods of near normal energy wtihout drug therapy. I have another condition (a clotting disorder) for which I take Coumadin, but, all in all, I'm feeling lucky and consider my symptoms manageable. That said, I had to have a few transfusions prior to removal of my spleen — which made me feel great, by the way. Part of what makes the condition bearable now is that I have worked at home as a writer for 20 years and don't mind being home-bound for stretches of time.

I commend all of you whose LGL presents more profound struggles with symptoms and the lifestyle changes imposed by the condition.

Interestingly, both my maternal grandmother and mother developed RA in their late 60's. I am free from that so far, but my clotting disorder is considered to be on the auto-immune spectrum.

 

4times
Posts: 1
Joined: Oct 2011

Surfing to help me stay awake, I found this site as I once again was searching for info On LGL, which I was diagnsed with about 18 months ago following a visit with my hematologist checking on my B-Cell lymphoma--in remission. My CBC was askew, so further testing was done, with me finally being sent to Stanford Cancer Center, where proper testing indicated LGL. VA hospital confirmed diagnosis later. This is my fourth cancer; first, Hodgkins Disease IVB diagnosed shortly after returning from Vietnam with USMC in '69. Prognosis was just a few months to live, but MOPP and Radiation did the trick.
Doctor at Stanford said any treatment now likely to do more harm than good--I also underwent R-CHOP protocol for the B-Cell lymphoma. (3rd cancer was extremey rare malignant nodular hydraenoma surgically removed) Friends knew Dr. Carl June, close friend of Dr. Thomas Loughran, so I sent all me paper work to him and he, too, confirmed the LGL and certified for me that LGL is associated with previously having both Hodgkins and B-Cell lymphomas.

I don't know what typical treatment necessary CBC's for LGL look like--my local hematoligist never heard of it--but even before the diagnosis was made, I'd noticed a dramatic change in my energy level. Once, highly active, I now need Adderall, a mild amphetimine, to help keep me awake during the day. I have many health issues, as my first cancer had spread into my lower spine, hip and left femur, so I now am not very mobile. Mainly, I read and am V.A. 100 percent disabled-temporary rating. But V.A. doctor says fatigue is unrelated to the LGL and V.A. is eager to dramatically lower my rating again.
My wbc was avering about 20,000 for a years' period; lymphocytes twice the upper limit of normal, with mild neutopenia at times. Other values are also out of range at times. Previously to my LGL, the only two times I've known my wbc to exceed 20,000, I ended up in an ambulance to the E.R.
But this fatigue haunts me daily, and I know my body; after all this is my fourth cancer since 1969, and I know the V.A. doctor doesn't have LGL so really doesn't know what it is like; but of course, knowledgable patients' thoughts are all too often ignored at the V.A. Just wondering what others think about this fatigue issue and LGL. I am also on a number of meds, and have overcome--almost miraculously--other, chroinc disease.
Thanks for any input. 4times

cancerspancer
Posts: 5
Joined: Oct 2011

Yes, certainly fatigue is associated with LGL. That was one of the main reasons I initially went to the doctor, but my fatigue has improved greatly with treatment over the past 3 years

Currently I have completely stopped treatment. I was taking a higher dose of 15 mg. Methotrexate to try to get into remission, based on a study my oncologist read. But after 6 months I started having short-term memory issiues. After blood work next week, the plan is to put me back on a lower dose to stay 'stable' with the realizationg that remission is not the goal anymore. Has anyone else experienced short-term memory loss, foggy thinking, hallucinations while on higher doses of methotrexate?

TrueTiger
Posts: 4
Joined: Oct 2012

 

Hello,

I have recently been diagnosed with T-Cell LGL Leukemia.  Resources are limited still but have been able to consult with Dr. Thomas Loughran. It's the patient support network on this condition that I'm trying to reach out to so that I can talk to others who are in the same boat. I have read this thread before but posting for the first time.  I have been on cyclosporine then MTX briefly (1 month) and am on cytoxan just recently with ANC near 0.  Meanwhile, I'm trying to recover from febrile neutropenic condition and have been to hospital in and out in the last month and a half.  It's been tough and I think talking with othes with LGL would help.

Regards.

lorraineh
Posts: 1
Joined: May 2002

I've been on this site before. Don't see many posts or follow ups with those posting.

 

I was diagnosed with T-Cell LGL Leukemia in Dec 2010.  Not in treatment at this time.  I doctor at Mayo, Rochester. Just follow up with labs every 6 months at this point.  I am an 11 year breast cancer survivor. Was Stage 3-B, went through 6 months of chemo (2 types, 4 rounds each), a mastectomy, and 33 radiation treatments.  Seems like it wasn't long after that and my Lymphocytes continually increased and my Neutrophil count continually decreased.  They say I have mild to moderate neutropenia, but have had no trouble with infections, etc. Feel fatigued, but no one seems to think it's from the leukemia. Hard to think it's not, imagine my body is continually fighting...

Curious what numbers were on blood counts before they begin treatment? or, how long some have gone before needing treatment?

Wish there were more people on here to "chat" with and get info from :)

jbacchi
Posts: 3
Joined: May 2013

I was diagnosed with T Cell LGLL in 1994 and for the most part have been on low dose methotrexate 15 mgs. every 4 weeks for the last 15 years.  Recently with in the last 2 years my hemoglobin count has been going down.  the doctor has increased my dose to 15 mgs every 2 weeks and it is still slowly going down (I have been on this dose for 2 months)  Now he says he wants to change the dose to 15 mgs every week.  After being so healthy for over 15 years it is a bit scary.  All the feelings come back and I remember what it was like not be well.  I was 34 years old and I had 2 very young children and all I wanted was to live long enough to see my kids grow up.  Well, now they are 26 and 23 and I am wondering if my time is up??  I was considering see Dr Thomas Loughran because it was his article in BLOOD that my doctor read all those years ago that put me on the meds that saved my life.  Hang in there.  I would love to talk to anyone else out there that has the same disorder as me.  If anyone has had a consult with Dr. Loughran I would love to talk to you.  I have a few questions, like how long did it take to get an appointment? and....What insurance does he take?  I have United HealthCare and I can only imagine what it might cost for an initial consult with him. 

 

Take care everyone.  If anyone wants to talk, I am here.

Josie

dadoftwins's picture
dadoftwins
Posts: 13
Joined: Mar 2013

Hi Josie

 

My husband was diagnosed about 18 months ago at age 40, a month after his dad died of Multiple Myeloma.  Your post gives me hope that we can get through this nasty cancer.  I have been fixated on the prognosis of no cure, and unlikely remission.  But my husband feels like crap.  He's exhausted and can't catch his breath after one flight of stairs (up or down!).  And now the mental fatigue is setting in on us both. 

How did you deal with it? 

Hubby is not having any luck with Metho..and we are getting a second opinion in a couple weeks at the Cleveland Clinic.  We love the docs at Ohio State but I'm so frustrated.  And just to really mess it up, my husband also has Cutaneous Tcell Lymphoma.  And after 18 months of treatment for the Leukemia we were just told that Cyclosporin won't be available b/c it doesn't work on patients with both of these stupid cancers.  so that is why we are seeking a 2nd opinion.  I of course, wanted to go straight to Dr. Loughran at Penn State, but my husband thinks by doing to another doc, that he is "cheating on" his current docs at OSU.  ughhh men!!!!

So, I am curious how you were able to remain in relative good health for 15 years.  We also have twin 4 yr olds and my husband wants nothing more than to walk them down the aisle some day.  Ok, tissue break.

Ok - so...any insight you can provide would be greatly appreciated.

 

And good luck with your next round of tests etc...

 

Amy in Columbus Ohio

jbacchi
Posts: 3
Joined: May 2013

Hi Amy,

Sorry I did not get back sooner.  I am so glad someone actually read my post.  Believe me I would love to know how I was so so lucky to stay so healthy for all those years.  I am blessed.  But, I think the key is to keep getting opinions.  I have had the same doctor since 1996 and just recently my blood counts are falling.  My current hemo is 10.2 I have gone from taking methotrexate 15 mgs every 4 weeks to 15 mgs every 2 weeks and my doctor is not happy.  I have been on this current dose for 4 months and my counts have improved but not good enough.  So after all these years I was told to get a second opinion.  I thought to myself Dr. Loughran here I come!  It turns out that he has recently moved to VA and I have to wait until he settles in over there.  Wonderful.  I should have listened to my instincts 5 months ago.

Well, before I continue let me answer you about a few things.  There are several treatment options if the methotrexate does not work. Use the internet and read Dr. Loughran's article in BLOOD.  Your husband's case is much different from mine.  It seems your husband likes his current doctors which is why he feels he would be cheating.  Tell him cut the poop and get a second opinion, any doctor worth anything will welcome as many opinions as you want to get.  When I was diagnosed I thought for sure I would not live to see my kids grow up.  Well now they are 26 and 23.  I do understand about the feeling like crap and being tired.  I used to say "I'm sick and tired of being sick and tired.!!"  It will get better.

I know it has been a few months since you wrote your post but, I hope he has gotten one.  I have lost confidence in my doctor that I have had for over 15 years.  So I am going to Memorial Sloane Kettering in NYC.  The good thing is that the longer I live the more information there is about this disease and the more treatments they come up with. 

So dont get discouraged.  I will post after I see the doctors at Sloan Kettering. 

Good Luck, Keep the Faith, Remember you are not alone

Josie

tlglfighter
Posts: 1
Joined: May 2014

Hello. Just found this post :-)

I'm a 50-year-old male who was diagnosed with T-LGL at the end of last year. I have been taking both Prednisone and MTX (20/weekly) for about 4 months now. Fortunately, I am generally doing well - except being severely anemic and thus being totally blood-transfusion-dependent (2 units/biweekly). I would like to focus on treating my anemia and start taking a drug such as cyclosporine to help restore my blood cell production rather than keep taking immune-suppressing drugs like Prednisone and MTX. I would love to hear from other T-LGL and/or Aplastic Anemia patients who have gone through similar experiences. Thank you.    

bendanyh
Posts: 4
Joined: Mar 2014

Hi tlglfighter, My situation is similar, except that after 14 weeks of MTX (weekly, incl. first 3 weeks of half dosage) without improvement, my DR switched me to cyclosporine + Prednisone (daily) . Looks this combination is better for me as after 2 weeks my hgb only dropped a little without needing a transfusion. Next Dr visit due next week. We'll see. You may want to discuss with your DR about switching to cyclosporine.

lglfighter

Posts: 1
Joined: May 2014

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