This thread is specifically for discussing what treatments you have used and what your experience was with those. What have you been prescribed? What worked and didn't work? Were there unpleasant side effects? What other things have you found that alleviate your symptoms?

Hi I like what you've done with the threads. MY daughter has not had any treatment, we are at the watch and wait period. Its been over a year since her diagnosis, I hope we can stay at this phase a long time

I have been undergoing treatment since I was diagnosed. First it was with high doses of prednisone-I am still on it-it has almost been a year. We are trying to get me off but every time we lower the dose my numbers go crazy so we added methotrexate in hopes that it would help my numbers-so the combo as of right now has not made any big improvements. We have also upped the dose of the methotrexate as well. I go today to the dr-my guess (which I am pretty good at) my numbers haven't moved! Hopefully I will get off this stuff!

Treatment for me has been methotrexate 10 mg weekly, with folic acid and fish oil. I thought I had entered something in all of these threads, but I can't find them. Oh well.

SMD71-if you don't mind me asking what does the fish oil and folic acid do? Have you noticed an improvement? Thanks, Sarasota

I am 47yo and was diagnosed over 12 years ago. It has been a drag. Initially I was on methotrexate for a full year with no improvement then cytoxan for a year which only made me vomit and feel terrible. No effect. Then cyclosporine-not much impact. I had anemia and low neutrophils as my issues. Went on campath iv then sq for a long period and it worked for 6 years-no blood transfusions but still took neupogen intermittently. Last year and half anemia started to worsen and I held off but now I am ILL and severely anemic with iron overload from blood transfusions so will be going on fludarabine. campath is good but it increases risk of serious fungal infections. This is "indolent and chronic" but that does not make it "pleasant"! and there is little info on this illness-trial and error.

Nice to meet you Stonesc-I am 32 and diagnosed last May-I have to agree that it has not been pleasant and the trial and error part has really stunk! I can't imagine being on methotrexate for a whole year-I take it and sleep for two days. I have not heard of the other treatments you have mentioned. Have you done prednisone? I also have anemia and that is not much fun either! I haven't had any transfusions and they haven't mentioned them yet either. Is fludarabine and campath other chemos? I don't have any children yet but am doubting if I will-I can barely take care of myself never mind a little one. The only specialists I know of our in Boston Ma and Hershey PA...I am clad that you have joined this forum-we might be able to learn from each other!

Hi Sarasotap, I am on folic acid as a replacement for this mineral. MTX tends to reduce your folic acid. Folic acid is important (from memory) for the nervous system. A lack of folic Acid in early pregnancy can result in Neural Tube Defects, ie Spina Bifida. Fish Oil is supposed to be good for joints and reduce the discomfort that one may feel with this issue. I tell you my legs and hips drive me nuts, especially when I have been sitting at the desk too long. (which being an office worker can be an issue) Welcome to Stonesc!! Sorry to hear you have been blessed with experiencing this rare disease for so long. As you will have read, we are all relatively new at this and are desperately seeking answers. Hopefully we will be able to help you as much as you will be able to help us. Welcome again!! Sharon

Just wanted to post the course of treatments as described by Dr Laughran from our visit last week with him in Hershey, PA for my husband who is 33 years old (more info from our visit on the hello thread). This may be old news for some of you. If your nphils decrease below 1000 then he would put him on methotrexate, which is a drug that is used by millions of Americans to treat rheumatoid arthritis. If he did not respond to this then he would prescribe another stronger drug called cyclophosphamide, if he did not respond to this drug than an even stronger drug cyclosporine A, would be prescribed. The latter drug is usually given to patients right before an organ/bone marrow transplant. All of these drugs are immunosuppressant drugs which would lower my LGLs (Large granular lymphocytes) allowing for the neutrophil count to go up. Dr. Loughran told us that 75% of patients respond to this treatment and get their neutrophils back to a stable and normal range.

LGL REGISTRY INFO: This registry has 2 goals: to collect & study info on people with LGL to gain valuable info on progression & treatment and to collect & store blood and tissue to develop therapies, diagnostic tests, treatments. It also has 2 scientific objectives including finding out how certain patiens have achieved spontaneous remission or complete loss of the TCell LGL clone (!). Any person with LGL is eligible to enroll in the national database. Participation involves effort of patient & your doctor. Patients enrolled in the registry will have access to ongoing clinical trials to establish best treatments. To participate, your doctor must contact the LGL Leukemia Registry Doctor, Dr Thomas P Loughran, Jr MD. Together they will determine if you are eligible to enroll. Just FYI.

nlbl, thankyou so much for sharing your info,. I will look at the Hello section shortly. I already knew that the register existed. I have emailed Dr Loughran myself (only yesterday) and offered to enrol. However, being in a separate country could make things difficult. Will keep you informed of his reply. Sharon

I think Dr. Loughran will be surprised at the number of new cases he is suddenly getting :) My husband also contacted him yesterday by e-mail, and got a response this morning. the response he got included the following: "yes we still have the registry and would be interested in having you participate. I am copying ms kendall thomas baab (KTHOMAS4@hmc.psu.edu) our LGL registrar who can contact you with details." ... "I would recommend dr ron paquette (paquette@ucla.edu) at UCLA as an expert hematologist who is quite familiar with LGL. 310-206-5755" I will put this in any other relevant topics as well.

I hadn't gotten around to posting my husband's treatment history and experience yet. As mentioned elsewhere, he also has Rheumatoid Arthritis, which he was diagnosed with first, about 5 months ago. They started him right away on Prednisone and Mobic (an NSAID). Then after running more WBC and tests on his liver, they decided which med(s) would most appropriate for his arthritis: Methotrexate (MTX) and Plaquenil (an antimalarial drug that is one of the disease-modifying antirheumatic drugs (DMARDs) used to treat arthritis.) His rheumatologist added several supplements at this point also: a folic acid+B12 supplement called MTX Support which specifically makes up for deficiencies caused by taking MTX. He was also told to take a high-potency Omega-3 supplement and a vitamin D supplement. About 2 months ago they did a bone marrow biopsy to determine the cause of his mysteriously low WBC at the time of his RA diagnosis, which found the LGL leukemia. He was not put on any new meds in response to that because he was already on Methotrexate (currently 15 mg once per week) and Prednisone. His CBC was already being monitored every 5 wks or so by his rheumatologist because of the MTX. They stopped his NSAIDs which seemed to be okay, and are trying to wean him down to the minimum effective Prednisone (currently 4 mg/day, was as high as 15 mg/day). As for the effectiveness of the treatment: his WBC were very low when he was first diagnosed with RA, then low, then back to within normal range within 2 months of starting the Prednisone+NSAID treatment, and probably before the Methotrexate+Plaquenil had a chance to kick in. The current cocktail controls the RA quite effectively. Side effects of the drugs: The most bothersome is the exhaustion, which could be the drugs or an unmanaged symptom of the RA - he can get very tired, especially if he has had a stressful week or a very physically active day. He is much more sun sensitive (prob MTX), his hair is thinning (MTX or Plaquenil), and his appetite and weight varies (prob Prednisone, esp since reducing dose has helped a bit). I don't think any of his doctors specifically prescribed it, but when my husband started swimming 3-4 mornings per week, it helped him feel a lot better in general (and specifically helped counter the RA stiffness). Some combination of factors (reduced Prednisone, stopped NSAID, nasty headcold, daylight savings time, stress of switching jobs?) has made him more tired lately and less up for swimming in the last few weeks. -Deirdre

Thank you so much for sharing the treatment program. I do not have RA but LGL mimics it. I have been on Prednisone for a year and the lowest dose has been 7.5 mg but my highest 60 and average 30. I have also experienced hair thinning (due to mtx) -which is hard as a female but I have found hair products made by Wen they have been really awesome. I hear a lot of patients at the oncologist office who boast of swimming being beneficial-we don't have a pool or any public pools, you have to get a gym membership somewhere. I have to say like your husband I have a low tolerance to lots of stress, or super busy days-it takes a couple of days for me to feel somewhat normal. Thanks again for sharing! To everyone-I just want to say how wonderful this forum has been-its been a blessing...

I recieved a reply from Dr Loughran. He agreed with my diagnosis (as I scanned a copy of my specialist letter to him) He basically said the same as you, cc to Kendall Thomas etc. I am going to read through everything and definately join. It will help them help others. (I hope) I agree with this forum, I have found it great and I make an effort to check it nearly daily. Hope everyone is feeling well. Sharon

After reading through many of these posts, It seems that everyone has different blood values. I guess (I assumed) everyones would the same as my daughters-- Low neutrophils high lymphocytes and low HGB/HCT. Obviously I, was very mistaken,. My daughter has normal WBC and normal Lymphocytes absolute and low RBC. So I guess we are all monitoring different values and being treated based on these values. For those of you that are on MTX and or pred, what was the determining factor that put you on the meds rather that the wait and see phase. Just trying to get a read on when therapy started Mama C

nlbl I just read your post about starting the MTX when neutrophils are below 1000. Thats kind of weird because Dr. L told us that if they stay steadly below 400 then my daughter would start the MTX. Thats a big difference.When she gets to 400 for a specific month she always rebounds the following month with 500 or 700. Shes only been above 1000 once (last month March 2010) in almost 2 years. I wonder if Dr L does it on a per patient system. I will be contacting him or kendall in the next 2 or 3 months so I will inquire. Mama C

Hello Mama C, I was commenced on MTX as I was symptomatic, ie headaches and fatigue. My neutrophils are 400-500. Haven't changed for ages. My hb is low, however my last lot of bloods showed a slight improvement. (not that I feel it) My doctor was also worried about how aggressive this disease was, and he didn't want to take any chances. I'm not responding well to the MTX, so he is thinking of using something else. Cyclosporin (I think) I am travelling to the uk in May for 4 weeks, so he doesn't wish to change medication until I return. Sounds to me that your daughter may benefit from medication, especially with her neutrophils being below 1000 on a regular basis. Hope this helps a little Sharon

I just came back today from the doctor and have been on MTX for about four months with very little improvement but my doctor does not want to increase the dose or switch to anything else-he is happy with me being stable yet I still have many symptoms. His thought process is that mediocore is better than miserable and because I am only 32 he doesn't want to 'use all the tools in the tool box at once.' I am disappointed to say the least because I wanted to feel more improvement. I understand his point too and it makes sense but I am still not thrilled. One day at a time I guess...

Sorry you're frustrated sarasotap (Michele?). Are you thinking the headache and fatigue are the meds not working or undesirable side effects of the meds? Maybe you and your doctor can shift the focus to treating the remaining symptoms that bother you the most? As a young person who will be facing this for a long time, quality of life is extra important. If they're side effects of a med, adding some supplements may help (hubby is on folic acid, b12, vitamin D, and heavy duty omega-3's, plus takes gummy C vitamins and a mineral multivitamin from before)

DDIxon-thank you for your kind words! Sadly my symptoms are from my LGL and have been my complaint since the beginning. Before I was pretty house bound but at my best I was my 'old' self-now I am feeling mediocre. Headaches and fatigue just suck the energy out of me! We talked about adding supplements but he wants a base line of how the dose of prednisone and MTX affect each other without any other meds. One day at a time I guess! Michelle/sarasotap

Hi Michelle, I'm supprised that your doctor doesn't wish to try something different. There are three medications at varying strengths that can be used. Then you get into the old iv chemo things. One would think that increasing the dose would only be adding a spanner to the hammer... so to speak.. Men's tool boxes are overflowing with tools!! I too suffer from the headaches and the fatigue. I manage to get through the day, but i make sure that I have a rest or a nap in the afternoon. Then I'm ready to start the evening chores of cooking for the family. Sometimes I can't even do that. Fortunately my husband is helpful and he will cook. He just needs direction.. that too takes energy. I actually managed a drive by myself today. My daughter goes to Melb to visit her father every second weekend. We meed at a place one and half hours away. Since my diagnosis, my husband and my parents have made sure that they drive. Hence, I've had hardly any time to myself. But today, I drove!! I felt free again. It was a three hour round trip. Listening and singing to music was great. I must admit, I'm tired now. (being the evening) But an early night won't harm. I just received a letter from my travel insurance company. They won't insure me for the LGL!! Suppose I'm going to come up against this sort of thing more often. Fortunately, I am a British Citizen, so I will be covered for any medical assistance that I may need whilst in the Uk. Must go now. Take care Sharon

Hi I see some of you are talking of headaches. My daughter has been complaining of head pains, different than headaches. Since about a year and a half ago she says she gets intense shooting pains in her head, normally in the front. She said its totally different than a headache a these are sporatic and dont last long at all but are like a knife jab. Does any one else have these? I enquired about them to Dr L he eill get back to us. Thanks Mama c

My husband has a few migraines per year, but I think it's unrelated (his dad had them as well). He has however had a few dizzy spells which cause him a bit of nausea. They seem to happen when we are in darker, enclosed places like restaurants...anyone else have this? Dr L did not feel this was related but said it's really hard to tell with dizzy spells.

I have a problem with dizzy spells, which I have never had before all this,,,I have no idea why... Michelle

my husband also gets headaches, or the feeling that he's going to get a migraine, but then doesn't. he also gets dizzy/weak spells.

That's interesting-I have had a straight headache for almost a week and a half-I keep thinking it will be a migraine but it just stays right on the line if that makes sense. I wonder if there is anything that can help with them...

Treatments that I have had are 1) watch and wait ;-) 2) I did the ECOG 5998 Phase 2 trial (failed on methotrexate, responded to Cytoxin but got liver toxicity), 3) a Prednisone boost just to enjoy the summer (starting to taper today), and 4) plan to start trial and error next fall. As far as everyday living goes I have instructions to call the clinic and/or go to the ER for a fever over 100.5. That has happened several times with getting blood cultures and sometimes IV antibiotics. Once I was sent home from an ER with instructions on managing the common cold. 36 hours later, with my next temp spike, I made sure I got to my home ER for real neutropenic fever treatment. At first it was hard for me to call my oncologist to complain about a cold or fever, but it seems that the specialists are the ones who best understand the urgency of this type of neutropenia.

I am failing with the methotrexate-no improvement with blood counts after four months and my numbers have actually gotten worse. Prednisone has been a blessing and a curse for me-I have been on it for over a year but without I dont function....As for the Cytoxin, that is what the dr wants to try in a couple of months if the methotrexate continues to fail...I never knew this would be so much trial and error-after a year of this I have made no progress and tired of all this already!

Sarasota..... and the rest. I know how you guys feel, I have been dealing with my 6 or so symptoms for 4 yrs, a few yrs ago my rhumy tried pred and other failed short treatments and sent me on to my oncologists to be seen instead of her dealing with it....just this year my dr's are trying to treat with real considerable methods. I have been on 10mg methotrexate for 6 weeks along with folic acid and other vitamins and my dr just upped it to 15mg now...... horrible side effects..... before treatment i use to headaches but now i get headaches that i have never felt so extreme. I was on short term disability for the symptoms i have are debilitating most days of the week....... i have been off of work for 7 months now and I am getting on Long term just so I can get this settled and figured out and under control. I am fed up and told my wife the other day that I would rather just die at this point than feel the way I feel.

I can only guess at your frustration. My 27 year old son has LGL and it took about a year and a half to diagnose. Like you, numerous bone marrows, blood tests ect ect. He had his spleen removed this April and it was with that pathology that they diagnosed him. He is on no medication but is now starting to have joint pain and we are concerned he is developing RA. He has his first doctor's appointment since his diagnosis is May, next Monday so it will be interesting to see counts. I think once you know for certain what you are dealing with, it helps get it under countrol. Not going to go on about attitude, gratitude, blessings ect as 4 years later (and it sounds a difficult 4 years) I imagine it must be tough to see the positives, although your daughter is adorable. Take care and hopefully you find what works for you very soon.

SunEnvy, sounds like you are having a horrible time. I checked your profile, wanting to see where you are geographically, since you seem to have been through a lot with not many good results and wanted to see if the MD Anderson Cancer Center in Houston, Tx was close to you. I'm being treated in the Leukemia Center there. Dr. Kadia is giving me cyclosporin, it seems to be working so far. Then I noticed you mentioned weight gain. That's the only time I seen that reported, but I have been experiencing it also, though not as severe as yours. About a month after I started my chemo I started gaining a couple of pounds a week, my ankles and feet are swollen and I get those little pains that make one wonder what is happening now.

thank you wendy and hope your son stays strong...... Laurie, i thought it was so strange as well with the weight gain but i have been dealing with the weight and waking up with swollen feet ankles wrists and hands..... they hurt sooooo bad to where my brain cannot concentrate. i think i am starting to have a nervous breakdown for real. both rhumy and oncologist talk weekly but they are mystified on what exactly i have .....everything points to LGL but wow not sure......

hi all, although it's sad anyone has this disease, I'm really glad we now have a place to find support :) I wanted to update that my husband started being treated with prednisone, NSAIDs, and then plaquenil and methotrexate for his aggressive onset RA. then when he was diagnosed with LGL leukemia a few months later it wasn't bad enough to have justified treatment, but the meds are the same. He also started swimming in a very warm pool several mornings a week. He was dealing with a lot of fatigue, swelling, and joint pain especially at first. At its worst, he was also experiencing "brain fog" and had trouble speaking clearly (felt like he had to enunciate very carefully to avoid slurring his words). He didn't experience weight gain so much as a change in his appetite - he felt like he could keep eating if he didn't think about it. Over the last few months his blood levels and general health has really improved. Then he saw his oncology doc for the 6th month check up after being diagnosed, and his levels were so normal the doc was astounded. Please now, I'm sharing this to give hope to those who are suffering right now, not to gloat or whatever. I hope you are all so fortunate soon, and we are appreciating it while it lasts. :) -Deirdre

I, too, have aggresive RA and have experienced a complete loss of appetite. I also get the "brain fog" your husband mentions... which is very bad since I speak in front of large audiences quite frequently. I am also loosing my sense of smell (and as a result, taste). Everything tastes like cardboard with the exception of very powerful flavors (hot sauce, tomatoes, salty things). I'm very glad that I am not alone in these symptoms because my doctor thinks they are unrelated. -Alex

I do not have the RA component but more the low counts and am once again dependent on weekly transfusions and am waiting to hear re: transplant. There is not a great deal of experience with LGL and bone marrow transplant (maybe a few other cases!) but we have tried EVERYTHING: methotrexate, cyclosporin, cytoxan, campath X iv and sq, rituxan. The wbc responded a bit and my platelets became normal but my anemia is SEVERE from the LGL I am in the group of more aggressive LGL although I had a period of 5-6 years with nothing but maintenance care (neupogen every now and then) but no chemo etc. Came back with a vengance in April this year. If you are in Southern Calif I recommend City of Hope and second to that UCLA. My doctor is taking input from Dr. Loughran and that is the sign of a good doctor. The headaches are a problem for me only from anemia but they can be pretty nasty. This is one crazy disease and I feel like an alien sometimes since we do not have the more common cancers where there is actual data. Very frustrating

Hi LaurieB I, too, live in Texas, (Cypress). I was diagnoses 5 1/2 yrs ago but previous health records showed my lgl started showing up in blood tests when I was 39 (1990). I did Loughran's first trial of meth and pred for 7 mos. No improvement. When I was diagnosed I had 3% neutrophils. My symptoms had been fatigue, infections, and fevers (which I attributed to hot flashes). Since that time I lived with neutrophils below 500. It was like taking 1 step forward and 2 steps back as they slowly kept falling. First to 300 back to 400 then 200 back to 300 etc. One day at a regular appt my test showed 0% neutrophils. I was given injection of neupogen. After much trial and error I now inject neupogen on a daily basis. I have never been hospitalized (really try to avoid that). My dr understands that quality of life is my first priority and works with me to treat symptoms if needed. I do what I want every single day. Some days I do need to nap. I do deal with nausea alot but it doesn't stop me. I also have alot of skin infections which drive me crazy. I treat them topically and avoid antibiotics as much as possible. When I think about it I guess I'm pretty sick but it doesn't stop me and I really don't think about it unless I have blood or dr appt Hope this info can help someone.

SunEnvy, I am in no way qualified to give medical or even mental health advice, but do you have any options for getting a second (third, fourth?) opinion? I find it confusing that your oncologist seems unwilling to make a firm diagnosis. Mine took a look at my medical history and the bone marrow biopsy results and said 'Yup, LGL' and hasn't questioned it since, even when I made him walk me through the process of coming up with that diagnosis. I'm going down to Houston for my monthly follow-up on Tuesday, which is going to include another bone marrow biopsy after 3 months of treatment. I want to talk to Dr. Kadia about the weight gain. I know I am eating more and not always so well, but it doesn't seem enough to make me gain this much this rapidly. I have been wondering about the medication ( cyclosporin). Am also concerned because my WBC is dropping again. Since this first showed up last year, I have gone through 3 cycles of low WBC (bottoming out below .5) then climbing to around 4.5 over a period of about 3 months, then suddenly crashing again within a few weeks. I had hoped that having the treatment would stop the crashes, but now it doesn't look like it. Although it does seem to have taken longer this time - 4 weeks instead of 2, it doesn't seem good. Just hope I can avoid the infections. To everyone on this site - it is good to be able to share. And we seem to come up with some many common symptoms that aren't mentioned in the sparse literature.

I am 36and originally was getting canker sores on and off for the last 7-8 years. I saw my doctor a couple times about it and he said it was very common and that I should just take b-12 and folic acid and prescribed kenalog in orabase. It started recurring so often I decided something was wrong beyond that and went to see a new physician. In the new patient physical he immediately saw irregularities with the blood of 2.9 % neutrophils and 93 % lymphocytes and referred me to a hematologist. I came in weekly for 9 weeks as he thought it may be cyclic neutropenia but the neutrophil count remained low. They sent my labs to a company in California called Genoptix that ran many tests and confirmed that it was LGL.I have since started methotrexate 20 mg once a week and bactrim 3 times a week. I asked about talking a folic acid supplement and was advised not to because doing so would negate any benefits of the methotrexate. Has anyone else been advised that as I'm reading people here are taking the supplement in combination. I have been on methotrexate 3 months and go back Monday to see if its had any affect.

In response to taking folic acid with methotrexate: as a former dietitian, I remember that folic acid is the antidote for an overdose of methotrexate; and that methotrexate works by blocking some of the essential folic acid functions involved in cell reproduction. However, it is still 'usually' recommended to take a reasonable supplement of folic acid when taking methotrexate to prevent overall folic acid deficiency symptoms. It is important to be aware too, that the food supply has much higher enrichment of folic acid in all refined grains than when original supplement recommendations were initiated. Also, many 'health foods' or 'new designer food/beverages' have additional folic acid. The bottom line: this disease has very few simple answers! I know because I live with it every day. I took 800microgram folic acid most days when I took methotrexate. ( I usually skipped the pill when I ate a bowl of cereal.) Methotrexate didn't work for me. Good Luck!!!!

Chitown35, I also suffered canker sores - none of the meds my onc prescribed did any good. My dentist recommended a mouthwash found online or Walgreens. It is Closys. I have never had another problem with mouth sores and my Onc is now recommending it to his patients. Hope this helps.

Methotrexate is chemically similar to folic acid and competitively binds to the same locations in your cells as folic acid. So, I agree with Susi, a reasonably low dose will not block the methotrexate. The traditional logic is that you need extra folic acid since you absorb less into your body. As for the canker sores, I get them too, but so does my entire family. I DO get them a little more often than they do.

My son got alot of canker sores as well and his doctor basically told him to live with them (very uncomfortable). We did a stint with a naturalpath and he gave him a bottle of what he calls "Watermelon mist" (will confirm name with my son, but something like that) which was a powder that you sprayed on the canker. It worked magic. So there is relieve for cankers and they don't have to be tolerated. Will get confirmation on the name/brand and perhaps it can even be bought online.

Funny you mention mouth sores... My son has had a few in recent years, and also a couple of severe throat infections - we don't know how long this illness has been brewing but suspect a few years. He was hospitalised 6 months ago when his Hb was extremely low (43), and then all the tests started.... T-LGL was diagnosed 3 months ago and it's been Methotrexate since, now 15mg/week. Also Folate and continuing low dose Prednisone. Neutrophils=700-800, platelets around 50-55, and Hb in the 90s. He's had a lot of transfusions (when Hb<85/90), but his Hb has stayed up better with the chemo and thankfully he hasn't needed one for several weeks now. 3 times he's had a small increase in his Hb, and his haematologist just told us he's definitely responding to the treatment - a slight bit of better news. For now he's keeping on the same drug/dosage, blood tests go to 2 weekly, and next specialist appt in 2 months. From the transfusions, he has sky high levels of iron and for the past month we've been hearing about treatment options for iron chelation, which will need to start in November. All through this, despite a bit less energy than before, my son has felt pretty well, been able to work, play tennis etc. He's having to deal with such a lot but it's wonderful to see him enjoying a more normal life lately. Though he's in another city, my husband and I take turns to fly up to check up on how he's doing and go with him to the specialist consultations.

to add to the folic acid + methotrexate conversation: my husband was already taking a folic acid supplement to counter the effects of the methotrexate (http://www.theralogix.com/index.cfm?fa=products.mtx.default&dvsn=rheumatology). He saw his rheumatologist yesterday, and they were talking about the hair loss side effect, he prescribed something called Leucovorin Calcium to be taken on the days he takes Methotrexate and a few days after. the description on webmd is pretty succinct: "This medication is used to treat or prevent serious blood cell disorders (such as thrombocytopenia, neutropenia, anemia) caused by certain drugs (folic acid antagonists such as methotrexate, trimethoprim, pyrimethamine)." Essentially, it's used to treat "serious side effects" of Methotrexate use, though my husband is only taking 5 mg a week nowadays and his blood counts are currently normal. So anyone who is having trouble with Methotrexate side effects might consider asking their doc about adding this supplement. Unlike many meds, this one is more like a supplement and doesn't seem to have any side effects of its own (often it seems like you're trading one symptom for another!) so it can only help :)

As to the 3rd 4th and 5th opinion, I am not sure if that will do any good, the only thing that would make me feel better is to take a trip to penn state and see dr loughran. He asked me to visit for further tests but financially we can not afford it. I have seen 2 of the top oncologists here in Colorado and the 2nd one suggested that i take a trip to the mayo clinic, the first oncologist never mentioned anything about lgl, the second one did more tests than the first but after getting my 4th bmb that came back "outside possibilty of t-cell lgl" thats when my 2nd one said I need to go to mayo clinic. I have been on 15 - 20mg of methotrexate every saturday for 2 months now and I have noticed no help and horrible side effects, Folic acid did nothing for me I feel. the 600mg of plaquenil daily has done nothing for me as well (and what scares me, the DR at mayo said if i continue the plaquenil it will give me an advanced LGL he claims) My symptoms are so serious and debilitating to me that I cannot function most days (i have been at home on short term disability now turning into long term) i have maybe 1 or 2 days where I feel decent where I can go outside and try some yard work but other than that i cant do much with my swollen and tender feet, aching wrists and hands, severe headaches, diarrhea and along with all that i have sleep apnea as well................. the hardest thing is that my wife feels that I am acting sick so I don't have to work since I have not been diagnosed by my dr's. The treatments aren't enough proof to her that I am not feeling well what so ever. As reading the posts that people put on here with all their symptoms and daily routines it makes the hair on my arms and neck stand upright with chills....... We really are a rare breed and it is amazing that Dr's arent any further with getting this under control.

ugh, I'm so sorry you are having such a miserable time of it! It sounds like your doctors are somewhere between uninformed and lazy, can't imagine how frustrating that must be. Also sucks that your wife doesn't "get it" - many of those symptoms by themselves can just be that of someone who's overreacting, but in combination (and with that severity) they can really ruin the quality of life. I would have your current doctor get in contact with Dr. Loughran. There's a list elsewhere that explains what medical information he wants for the registry. If nothing else, it would confirm the diagnosis. Dr. Loughran and his office are very responsive, so you could also try asking them for a recommendation of someone in your area who has experience with LGL leukemia. Lastly, I would have your doctor prescribe Leucovorin Calcium to help counter all those MTX-related symptoms, because yours certainly sound like "serious side effects"! And maybe try taking Claritin-D, even if it doesn't make any sense, it's harmless to try, right? :)

I truly dislike mtx! I have been on it for 7 mths with no improvement! I am finally being weened off of prednisone after a year and a half!

UPDATE !! i have visited my rheumatologist yesterday and she has advanced me onto the self injection of MTX 25mg .8cc and she told me to up my folic....... she said we will try this for another 2 months and then maybe try rituxin......... not sure if anything will help.

SunEnvy, I really feel for what you are going through. I really BELIEVE you need to at least talk to Dr. Loughran's office. He is the expert!! All other Dr.s have their own opinions and do not specialize in this particular disease. Dr. Loughran basically wrote the book. Please, please talk to his office. I would do it before going on 25 mg of MX

Dear SunEnvy I agree with the above 2 comments. We took a step of faith with our finances to go see Dr L just for one visit (he was outside of our insurance) & it was so worth it. Granted we were able to drive so the costs were less. I do know that hotels in the area have discounted rates-you may even look into the Ronald McDonald house (not sure if there is one or if you'd qualify but worth a shot). Even if he simply agrees with the actions your doctors are taking I cannot tell you the peace of mind which could be gained from seeing THE expert & knowing for certain where you stand. It's worth trying to pursue a visit & seeing if they do have some type of fund/grant money to help you get there. Or is there any group/family members that you could make your need know to? Dr L's lab is able to run very specialized tests which may help you get a clearer idea of your situation. I'm so sorry that you are in such a frustrating situation. I will pray that a way be provided for you to either go see Dr L or gain peace of mind & reduction of symptoms soon. Hang in there.

I would like to say thank you to SKING for the response to mouth sores where they inrtoduced my to closys. I have only been using it a short time but it has produced good results.I had one when I started and it healed quicker than usual. It is a toothpaste without lauryl sulfate and a mouth rinse. I got both for under $20 at walgreens. I am really glad that I have signed up for this forum. After 3 months of methotrexate treatment i had a small increase in neutrophils but I have noticed each time I get my blood drawn my RBC and PLT are going down. The doctor said that its a slow growing leukemia and any kind of response would be slow as well. My doctor doesn't seem concerned and said keep everything up and come back in a month.I still am not on a folic acid supplement or B-12.Maybe that may have something to do with the red counts? I will have to ask about that again when I go back. I have noticed though that Ii have been getting winded a lot easier lately. Since being diagnosed I dont't feel as indestructible as I once did. Anyone else get overly cautious after diagnosis? My doctor said do what you normally do,avoid sick people, and wash your hands. I did get a little paranoid and quit my part-time job driving a cab part time because i didn't want to be in close quarters with who knows what. Hell I had it for at least 8 years without knowing but since diagnosis have felt much less adventurous .I'm still not sure how to feel about that. I know all cases are different but my last neutrophil count was 226 up from 176 in July. I was wondering how that may compare to some of you.

Hi Chitown35, I understand your feelings. My son was diagnosed in May, although they had been trying to find out what was wrong with him for about a year and half. Because his blood counts had been so low (ok once he had his spleen removed in May and so far staying within normal) he became very paranoid about germs. I started to call him "Howard" as in Howard Hughes. I was afraid it would limit his life. Once diagnosed and we did some reading (leukemia is such a scary word) to find that typically this will stay in the background for many years, he relaxed a bit. I also pointed out that he could get hit by a bus at any time and if he had wasted time worrying about being ill at some future date, he had wasted his life. Unfortunately, we also had a friend lose their 16 year old daughter to a freak boating accident this summer. You really never know when it is your turn and while it is still good habits to wash your hands and stay away from ill people (for everyone)... live large and don't limit yourself with this. In a way it has been a blessing for my son. Since this scare he has lost 80 pounds, he eats better than I do, reads labels, runs, plays hockey has seen a naturopath (didn't help although he did introduce him to "watermelon frost" which works for cold sores as well and made it worth the time and money as he had suffered for months and the Dr just kept saying they would heal themselves although the sores were very uncomfortable) , He has pretty much taken a 180 turn from where he was heading with to much partying, bad food choices, to much alcohol ect. He has started to have joint pain and we have asked to be tested for RA, but he has not stopped moving and is just "playing through the pain" and always feels better afterwards. So after much rambling my suggestion would be to put this in the background as much as possible, live the life you choose, and watch out for buses :-)

I have been more careful but that is because I catch everything and don't recover quickly! I have had three colds back to back and now a sinus infection. I do wash my hands a lot and watch my surroundings, if my family is sick they stay away. I do as much as I can-I work part-time and go to school part-time. I have found that being pretty scheduled has helped and getting rest when I need it. I do understand about playing through the pain as I have joint pain each day all day. I take advil and other meds when it gets really bad but the rest of the time I just work through it. I know they say this is a slow growing leukemia but my numbers haven't improved at all with treatment. Chronic diseases are difficult because you have to accept you can only manage symptoms!

Somewhere on this site, someone mentioned that taking Clariten D helped their husband's joint pain (you might want to look back a bit on this thread for more detail). My son has always had allergies and use to take it daily but had stopped when his counts were very low and the allergy symptons subsided. The joint pain is a new development for him so after reading the comment saying that clariten had helped her husbands pain, my son is now going to try taking it daily again and see if it will relieve some of the pain. Will let you know if it does anything for him. Sounds like you life is very busy and you are not giving in but are being smart. It is a b@!$+* of a thing.

Glad the Closys worked for you. It has really changed my life. Anyone have problems with low Platelets? Mine have been borderline low but have been going down consistently the last year. Lowest at 65. Really don't want to have to start with transfusions. Is this a part of the LGL?

I am transfusion dept waiting for bone marrow transplant-my platelets have normalized and now my hemoglobin and neutrophils are low. I do not have the arthritis part of this but have generalized symptoms from the anemia and abdominal pain from big spleen I have been on all the drugs the past 10 yrs but here I am! Really sucks

Stonesc, all the best with your treatments. Keep strong. Sking, only 3 RareShare members mention having transfusions so far.... My son was transfusion dependent every few days for 4 months but with the chemo hasn't needed one for 9 weeks now. He has iron overload though and starts chelation treatment in November (hopefully for a limited time if he avoids more transfusions). He's staying on MTX at 15mg/wk for now. His Hb has been better at 85-100 recently (should be >130), but the other markers are still out of whack e.g. Platelets around 50-60 (should be >150), Neutrophils 70-90 (should be >190). For now his haematologist is more concerned that his Hb holds up so he doesn't need transfusions. It seems everyone has such indivdual symptoms and responses to treatments. My son feels fine at the moment and, right now, we're glad he can live a sort of normal life without needing to spend a lot of time at the day clinic. None of us is looking too far ahead - we're just glad for one day at a time.

Anyone have low vitamin D? Mine is extremely low and when I take the extra vitamin D my fatigue is alot better. Starting to think low D may have alot to do with these disorders. Wish I could find a way to raise my platlets. So far they are proving to be my most pressing problem since the neupogen is keeping my neutrophils up.

I have had low platelets and was told that was part of the LGL. I have not had a blood transfusion for fear of iron overload. I however had low vitamin D but that is not specific to LGL-a lot of Americans have low vitamin D. On my good days I get tons down and on days that aren't my best I just slow down. I have found that my stress level plays a big part in my blood counts so I have been working on self-care and I suggest everyone should!! Build something into your schedule and you are more likely to be successful! I hope everyone has a good long weekend!!!! I would also like to say I do appreciate everyone sharing their info-it really helps me out!!!

Hi there, I was diagnosed with T-LGL nine years ago. I have done the methotrexate, no luck, and have been doing the Pentostatin for three months. My counts have normalized with the exception of my RBCs. I can't seem to make any more. My current doctor is researching options for this issue. In my case the CD-8 marker is the affected one and what we need to target. With an average hemoglobin of 6.0 and Hematocrit of 17 you can imagine my fatique and headaches. It is hard to function like that. I get blood transfusions every two weeks to survive. I met Dr. Loughran nine years ago. He told me to just go live my life normally, which I have. I went to the Mayo clinic in Jacksonville 12/2008 where I was told this disease is perfectly manageable and to just live my life. Any other folks fighting to make and keep RBCs?

Hi Ducky Welcome to RareShare. Like you my son has low Hb (about 90 since his last transfusion 9 weeks ago). So far only 3-4 small increases in his Hb after being on MTX 3 months, but still 40 down on what it should be. His HCT is around 29, and RBC about 2.7. For now at least, it's great for him not to need transfusions but early on they were a life saver. It's very humbling ....all those people who give blood to help others. Are you on any treatment for iron overload?

I am not on anything yet for iron overload. I have had about 32 transfusions this year so far. I had 2 units Tuesday. The guilt is difficult, I feel like a vampire or pariah living off others. The values you give for your son's RBC and Hb are different than the ones I am familiar with - are you outside the U.S.? RBC of 2.7 here would be impossible to survive, I have been as low as 5.0 and they don't know how I could walk - the lowest my doctor has seen is in the 4.0's.

New twist for my son. We asked the doctor to check for RA as he had been experiencing some joint/muscle pain. The dr did some blood test and said he was negative for RA but that it came back positive for ANA which is a marker for systemic lupus erythematosus. Ryan will have to go to our family doctor for further tests. Has anyone heard of this? We are not sure if this means the diagnosis of T-Cell LGL is wrong or if this is in addition. Life sure can be unfair sometimes.

hi Wendy, sorry you and your son have another medical mystery to solve! RA and Lupus are only two of many different autoimmune disorders. the presence or family history of one greatly increases the odds of having another. my husband has RA, his dad has lupus, and his dad's siblings have RA, Sjogrens, Diabetes and other immune related diseases/disorders. A "positive ANA" result indeed doesn't give the doctor specific info. a thorough (though technical) explanation of the test and result can be found at labtestonline.com (http://tinyurl.com/n0tc). the lupus.org website also has some great info (http://tinyurl.com/23royox) I hope that you are able to find a diagnosis soon and then find a treatment regimen that works. Unfortunately there is no one medical specialty for autoimmune disorders, but if you can see a rheumatologist that might cover the most relevant disorders better than a general internist could. Since your son already has a rare diagnosis made even more rare by his age, his autoimmune disease could also be a rare one, and/or presenting in an unusual manner. As an aside, for my husband, swimming every morning in very warm water has made a big difference in his RA symptoms of stiffness, joint pain, and fatigue. At first that seemed odd to us since when you're sore you think you should take it easy. good luck to you both!

Thanks so much for the website. it was helpful and easy to understand. I don't know of any family history of any kind of auto immune disease so it is really puzzling. We have two other children and they have no problems (although Ryan is the oldest) My son is dealing with this all better then me. I was finally starting to relax a bit about the LGL as his blood counts have been good and he has been feeling good. It was very scary to read about lupus and the way it can attack organs (made me wonder if that is what really attached his spleen so that he had to have it removed?). So many questions... I have been looking into finding a rheumatologist in our area. Certainly I have found that not all doctor's are created equal so am taking some time to find a good one. Interestingly, I checked this Rare Share site for a lupus forum. I found it but it had only one member/post from two years ago. May lupus is not "rare" enough? It is nice to have a place to share some thoughts/concerns/get information and know that people will understand.

Hi Ducky I'm from New Zealand. I too noticed some values look different in people's posts- decimal points in different places? My son's had 38 transfusions since March and soon he'll begin iron overload treatment for high ferritin levels. He doesn't have joint pain that I know of, but it's something to look out for. I sense things can change/develop with this illness and it's definitely worth pushing for biopsies from time to time to confirm/update diagnosis and so helpful to know a bit about others' experiences and treatments via this forum. Thank you for sharing, everyone.

Hello Boxall5, do you know Jillian B. in Pensacola? I believe you do and talk about a small world. We are in the same needlework guild and she told me about your son. I do want to get in touch with you to find out what treatments he has been receiving. She has my email address. Best to you and your son.

Ducky and Boxall5 I completely understand. I am transfusion dependent (2units a week) to keep my hgb up to 8 but it is typically 6-7 which is not compatible with doing anything. You mentioned things change and that is correct. Somehow the LGL gets active and less active. They think it is a spectrum of ill defined syndromes of LGL . I would ask your doctor to come up with a plan that incorporates the what if-ex if this doesnt work we will do x, Ultimately if the hemolytic anemia keeps going you may want to consider more intensive measures. I would say you need another consultation because your illness has changed (me too) I totally relate to the life altering experience of anemia-very disabling and there are many people with the arthritis part of LGL and then the others like us that do not. It really is not completely understood. I feel like a vampire too but at least we are trendy now!

So true about being on the cutting edge! But I was lamenting to a friend that although Halloween is my favorite holiday, I don't enjoy being my own horror movie! I have become a vampire, living off other's blood, the invisible woman because no one ever sees me anymore, a frankenstein because of this mediport sticking out of my chest, a witch when I get too weak to do things myself, a mummy when I am weak for the way I walk, a ghost for the way I haunt my house rarely going out..well, you get the idea. How about this cytotoxin? I wonder if it may be the answer to our RBC dilemma.I will be seeing my doc on Oct 17, I am really going to grill him.

Ducky I would erase all of those monsters and say you are a warrior! I went on 1. methotrexate 2. cytoxan 3. cyclosporin 4. campath 5. rituxan The campath worked for along time but this year the LGL got busy Hemolytic anemia is the issue for LGL meaning we attack the red cells So you either have to kill the LGLs and/or get rid of the antibodies against the rbc I developed a reaction to campath (have had it 4 times over the years) so had to stop Next drug trying in Velcade which goes after the anemia (ridding the antibodies) fludarabine has been tossed out there but it causes worsening anemia!! stem cell transplant will be the next step once they find a match I have my up and down days but if we don't try ....

I was told early on that bone marrow transplants were ineffective for treatment in LGL? Are they changing that thought or is this experimental? Have you tried the pentostatin? Where in the country are you to have access to these variety of treatments - are they a prescribed protocol from Dr. Loughran's playbook? More info please! Also, I just don't feel like much of a warrior, I am starting get a bit scared for what this is taking from me. I can't up and travel with my little boy like we used to do. I nearly passed out at Walmart Saturday because I made the mistake of eating lunch before going. Starting to realize how "life limiting" this really is....

The data on transplant for lgl is not out there. I am at City of Hope in Los Angeles and the panel of experts including UCLA, Cedars all have recommended transplant. There are no protocols per se with this disease and not all agree with general recommendations that exist. City of Hope is seeing more cases of LGL and felt that the transplant was an option that needed to be on the table since there are not other options. For the anemia there are treatments aimed at removing antibodies to the red cells (rituxan, velecade) that do not target the LGL and not sure if these will work but trying Unless Dr. Loughran has your file and bone marrow slides I would seek out other medical opinions.

I have heard a lot of posts stating doctors think this is a really manageable disease yet it has a lot of impact on my life. I am trying to life my 'normally' but my LGL does determine a lot of my limits! So one of my biggest issues is joint pain-been on prednisone, am on mtx, have been doing physical therapy-take hot baths, depression meds, joint cream for pain, and advil. Does anyone have the same issue? What are some of the ways you help with the pain?

Joint pain is new for me since this spring (5 years post diagnosis). The pain/stiffness/weakness/limping is worst when I get out of bed or have been sitting/inactive for awhile. It all disappears when I have had prednisone and then gradually returns about a week after the medicine has been tapered. I have no swelling. I haven't addressed the pain with my doctors as a new problem yet, just the weakness associated with it. Advil helps, but I limit taking it to a couple times a week. No treatment tips from me, just reinforcement of the problem. I hate sounding like a chronic complainer (even if I actually have become one). There is an odd sense of both comfort and discomfort from reading about everyones experiences here, but I really do appreciate it. I don't feel quite so misunderstood and alone in this journey. Thanks everyone.

Hi Ducky I am totally disbelieving that you obviously know my sister!!!! What an amazing coincidence! I'd love to email you and will ask her for your email address. My son continues to do OK for now on the MTX, Prednisone, and Folate with his Hb holding (tho still low) but his other markers are not improving. He still feels pretty well and works full time in a busy job, plays tennis.. Long may that all continue. Early on, my son's haematologist mentioned Cyclophosamide as next to try after Methotrexate... with a Bone Marrow transplant a last resort (but even siblings are often not a match). Research is something going on all the time, and Dr Loughran seems to drive a lot of activity - I notice his name usually appears as co-researcher in many articles. They make dense, complex reading though - practically all goes way over my head but I'm still drawn to reading some. Take care everyone

SUSI-235 Don't feel like a complainer-if we don't discuss these symptoms then how is anyone suppose to learn from each other? ;-) I responded the same way to prednisone and the joint pain! I have felt muscle weakness-that is the worse. I am the same way I limit my advil because I am afraid of destroying my liver-I am only 32 and am suppose to live with this for the rest of my life! I am seeing the doctor tomorrow but I doubt he will want to address my pain issue-he likes to work on one thing at a time but that isn't really working for me since we haven't been able to solve one complication. Thanks for your feedback!!

sarasotap - I am having same issues as you, I am a 34 yr old male, It all started with headaches, fatigue for me and feet swelling in the mornings, then it became something I was dealing with on a morning noon and night basis, My hands and feet hurt to the bone. My Rheumy has tried pred and a long list of others and nothing helped, am on .8 cc's 25mg once a week of MTX self injection and 600mg of Plaquenil daily...... nothing helps me with my joint pain. My oncologist has finally had an ahhha moment and is sending me back to my neurologist for possible neuropathy in feet and hands.I am hitting rock bottom and feel nothing will help me. the hardest part is i have had another conversation with Dr Loughran and feels he could not DX me with LGL, he feels since i do not have RA that he wouldn't be able to say 100% for sure its LGL, he suggest my DR's still treat it like it is..... so all this time they have been trial and error for treatments on me

I started my methotrexate treatment July 4 when my neutrophils were 2 segs . Today at my 3month visit they are up to 8 segs and lymphocytes decreased 10 %. I have been tired a lot but started going to the gym over the last month and doing cardio. The cardio is starting to grow on me mainly its just treadmill and light weights just to stretch out and get the blood pumping. I changed my diet up a little bit as well. As of late its been whey protein shakes and subway. Anyways this may not be major changes, but I'm feeling better and the doc is happy with the results. I'm still not taking folic acid supplements and he advised not to take any other supplements. The canker sores have subsided for a little while as well. So far so good as far as that! .

Stonec - could you give me the name of the doctor who prescribed the Campath for the low RBC. I told mine about it but since it is an off label use he will have to build a case for me to be allowed to use it. By contacting that doctor or looking at his research papers on it he can speed up the process. Thanks for your help! I got a little boy to raise and need to hang around as long as possible.

Suneny- I have found the idea of only being 32 and having to fight this kind of frustrating because I am already not responding to reg. types of treatments. I am trying to get more doctors attention and researchers as well!! I have had a lot of pain too and plan on going to a naturalist as to try some alternative methods, like acupuncture. My thought at this point is it can't hurt to try-I don't lose anything in the matter. Has anyone tried alternative methods before?

My doctor is Dr. Alexandra Levine at City of Hope and tell your doctor to look at the research articles that are showing it as a tx for LGL These tx are soooo expensive-we could all be sitting on the beach in Bora Bora!!

Stonesc-isn't crazy how much these things cost? We do have health insurance but the copays have been exhausting. We weren't well off before all of this mess and only one full-time income has been an adjustment. We had to downsize and now rent an apartment. I think what bothers me most is a lot of these meds and treatments cost so little to make but the drug company mark-up is crazy!!!

Thanks for the information on the doctor, I start the fight again next week it looks like. Thinking about putting up the outside Christmas lights while I feel like it...too early?

Sarasotap - see my post under "LGL leukemia - symptoms and other diseases" thread. I have shared alternative treatments I am using. Go for the acupunture!. time again I see traditional medicine providing answers where modern medicine can't. A friend of my is recovering from severe non hodgkinsons leukeamia and has high blood pressure. His frustration at the doctors years of lack of ability to provide a treatment lead him to a chinese herbelist - who has got his blood pressure down - the only person in all the years he's had high blood pressure. I believe using modern and traditional medicine is the way to go. :-)

I agree that looking at alternative forms of treatment is a good idea. As a small example, my son suffered with canker sores that were very painful for over a year. Our specialist had no suggestion on how to alleviate it and saw it as just something to endure. We mentioned it to his naturalpath and he handed us a $4 bottle of "Watermelon Frost" (which I know is a flaky name) but it cleared up Ryan's mouth sores in about a day. Whenever we have talked to any of the doctors Ryan has seen about nutrition or supplements to try and build his immune system, it is always the same, just eat properly. Not so simple if you can't afford non-medicated, hormone free, free range, organic food and don't have a plot of land to grow your own. I read a book called "Skinny Bitch" which talks about the state of our food industry (am a vegetarian now) and the food we eat is NOT the same food our parents/grandparents ate.

Hi everyone I wanted to let you all know that I've put a link to a very good article in *Disorder Resources* (see left menu box). Can't see an alert to this anywhere, hence this message. My son's haematologist gave us this article recently and I would like to share it with you. It's a new article (2010) from French researchers considering 229 patients with LGL, looking at all aspects of the illness, treatments, etc. and it makes comparisons with previous LGL research studies. Perhaps others could also share good research articles here? FYI Disorder Resources submitted by members are vetted by RareShare before appearing. cheers Karen from NZ

I was excited to see the French Registry Article earlier this month. Difficult to find anything current on LGL. May be a little technical for some but I found it helpful. It shows that Cytoxan has the best response rate. I wonder why Cyclosporine and Methotrexate are concidered best firstline therapy? I took 1 year of Cyclo and 15 months of Metho with only slight results. So far doing better without anything. After chatting with so many others for three years, one thing I know, Your results may vary. It is amazing how drastically different we all can be and yet simular in this rare affliction. Still it helps to be able to compare and relate. Atleast we have things to try and share. Thank you all. Best wishes, TJTeresa

I haven't posted for a while due to being so ill. The LGL has attacked my kidneys (had kidney biopsy last week) and they are failing now. Hope to have the bone marrow transplant by January if they can improve the kidneys. KIdney transplant recommended if no improvement. I am telling you that LGL is a full range. I lived 15 years with the more chronic indolent and this year am in the advanced stages. It can be a very aggressive cancer and everyone should be sure they have a very knowledgable hematolgist on their case.

stonenc, Are you NK, The form of agressive LGL? Sorry you are having such a hard time, my prayers are with you. It is crazy how different it is for all of us, all the more important it is for us to keep in touch with each other.

Interesting that you ask. Ultimately T cell but some act like NK. Most of my illness has been chronic with the less intensive chemo (no more pleasant of course) and it seems that dx in 1998 with some ups and downs (lots of downs) Not sure if this is my last attack on this but I sure wish there was more research

Me too!! Maybe the House will pass this new thing about rare diseases and could encourage new research with the CDC. Back in 1998, I did a Chronic Fatigue Syndrome study with the CDC. It was fairly extensive, however I don't know what their study findings were. I had a copy of their tests but lost them in a fire, would have been interesting to compare now. Sometimes the unknowing is the hardest part of this and never know what any day will bring. Just keep searching and crossing my fingers, with my luck they will find a cure the day after I die. LOL

Hi, I posted a few months ago about my husband's diagnosis of t-cell lgl. This original diagnosis was based on a gene rearrangement test that showed "TCR gamma chain gene rearrangement consistent with the presence of a clonal cell population." The doctor wanted to confirm the diagnosis by running a flow cytometry test and the results came back and did not show any abnormality. She now refuses to move forward with the diagnosis/treatment because of the results of the flow cytometry, combined with the fact that he does not fit the "normal" lgl profile (he just turned 29). I am interested in hearing if anyone else had this combination of test results or has had as much trouble getting a diagnosis. This state of limbo has been going on since April and we are desperate for answers!!! Thanks for listening.

unfortunately a lot of people seem to have gone through several different potential diagnoses before settling on LGL leukemia. my husband's case was actually odd - the hematologist/oncologists guessed his unusual diagnosis the first time he saw him, and a bone marrow biopsy confirmed his suspicion. I would be wary of a doctor who thinks he doesn't have something just because he doesn't fit the profile, especially with a disease so rare that there shouldn't be a profile (many people on this site are younger than the "typical" age of 50+). I would highly recommend seeing an oncologist or hematologist. If the existing doctor is already one, then contact one of the authorities on LGL Leukemia (like Dr. Loughlan) and ask if he can recommend someone in your area with specific expertise. As for the flow cytometry, I'm not sure what that does. I believe my husband's diagnosis was based on the presence of actual "large granular lymphocytes" - 3% mature or something like that. good luck, few things as frustrating as the unknown and/or having a doctor be dismissive. -Deirdre

btw Tezbomb, I see you are in California? If you are in Southern California (specifically LA area or San Diego) there are some specific oncologists that have been recommended

We are in Palo Alto and are part of the Kaiser Permanente system but have had a second opinion given by Dr. Coutre at Stanford. He recommended starting methotextrate, but my husband's primary doctor through Kaiser does not want to start him on the treatment at this time since only one of many tests has come back positive. I think we are going to try to contact Dr. Loughran directly to hopefully get some clarity and recommendations for doctors in the Bay Area. Thanks for the response.

I was missdiagnosed with Tcell CLL on my first bone marrow biopsy. 2nd, 3rd and 4th were Dx of LGL. 4th was Dr. L without biopsy. He said my markers are strange and unusual compared to most. My local Doctors admit they know nothing about LGL and do whatever Dr L says to do. I believe you must have a biopsy to be positive of type of leukemia and LGL is so rare, most pathologists have never seen it before.

Stonec, How you hangin' in there? How is the LGL attacking the kidneys? I know in my case the T cells are suppressing my body's ability to make RBCs. I am curious about the kidney aspect as I have suffered through kidney stones since I was in college. Could this have been an underlying symptom is a question I have lingered on more than once. I am currently free-falling as I had no drug coverage to pay for the Cyclosporin. Hopefully, Dec 1 will find me with drug coverage and I can start treatment. I will have another double transfusion on Friday which will make numbers 45 and 46 units of blood this year.

Ducky, I have left-over Cyclosporine if you need. Be glad to send it to you, I have no use for it and don't know anyone who needs it. e-mail me if you want to.

Ducky, I hurt to read what you wrote but how wonderful that TJ Teresa maybe can help. You guys are both in Florida, did you realise? All the best Karen from NZ

Thank you TJ! I may take you up on it - I got turned down by the drug company - at $2500/m income I make too much to qualify. The cyclosporine is $900 a month and I may need one to three months supply. I will find out today if I have retroactive drug coverage through Medicare, if not...also I see the doctor today. Judging by my pain I will need double transfusion tomorrow, but I have been doing really well. I think it is the Chirstmas adrenaline that is driving me. Did the cyclosporine work for you?

I took Cyclosporine for over a year with very little results toward the end. My blood pressure shot up real high and was not getting enough out of it to begin BP meds. Then took Methotrexate for 15 months with slightly better results, gained a lot of weight and doing just as good without it now. Mostly concerned with ANCs and have not needed any transfusions so far. I have about three weeks of Cyclosporine ( individually wrapped ) pills. Good luck at the Dr and with Ins. My medicare part D denied me for Neulasta and have a feeling I will also be denied for Cytoxan. NIH has offered a Campath study if all else fails. According to results I have seen, Cytoxan has a better response rate, not sure why it is not used as a first line therapy.

It is frustrating - they put me on Pentostatin after an expert said it was 70% effective at getting remission. When it didn't seem to work, the doc wants to back track to Cyclosporine. But here is the twist, could it be a Christmas miracle? Although extremely anemic and needing my usual transfusion, the doc noticed an uptick in my baby RBCs. I may be making the turn. I am going to try to make it a week without transfusion to see if my body is rebounding. It will be hard trying to get some Christmas decorations up in this state...but you can't slow down Christmas for a nine-year-old! I will let ya'll know next week what my status is. Been off Pentostatin for two months, but maybe it worked...

Hi All, Havent been replying lately, my daughter is back to college and still hangin in there. She just turned 21 and we had a big party for her. She is still on no meds, Dr. L is still monitering her blood work but so far so good, I guess. This last blood test was her best with HGB at a record 10.3!! Neutriphills at 700 and Lymphocytes at 77. She is still extremely tired at college but never complains. Is anyone else not on any meds yet? And if so how are your blood levels?? Take care everyone Mama C

Ducky, don't stress too much, I am sure you will have a wonderful Christmas. I been doing this a long time and find that laughter and positive attitude go a long way. Eventhough I have drastically changed my lifestyle the stress sometimes creeps in and my counts will go down. Not sayin its easy, but don't worry, worry is definately counter-productive for health.

Hi MamaC. My son is still not on any meds and his blood count is good. His only problem is joint/muscle pain and although the RA test came back negative, he is going to see a specialist next week. Sometimes I have to take a break from this site as it scares the hell out of me. I have not told him about it as I don't want him to start looking for symptons. Just feeling blessed for every day that goes by and he feels good.

After 6 months of methotrexate treatment my ANC was high of 277 down to a current 130. My platelets started at 160 and have consistently dropped to 87. My WBC was 8.5 and is now 2.7 of that lymphocytes are still 84.4 % of the total count. My HGB started at 16 and is now 13.2. I have become more fatigued as of late and have had a headaches,and a dull ache in my shins and forearms, not sure if that's related. My 6 month sample went from my oncologist to Dr Loughran yesterday and he is awaiting his opinion. Is anyone else from the Chicago area? I was going to ask on their options of Northwestern and University of Chicago as they both have large cancer research centers. Closys has helped with mouth sores but once I get them they seem to take up to 3 weeks to heal.My primary physician suggested neupogen when I recently saw him for the fatigue.The oncologist disagreed so currently its just methotrexate. I looked into what the next step may be - cytoxan and am a little nervous about the side effects. I have had to take some days of off work recently due to illness going around the office and trying to avoid them.I really do appreciate feedback from everyone as I feel a little more educated when speaking with my doctor and making decisions.

Hi there Chitown, One thing you want the docs to check for is the blood marker that is affected (such as CD8, CD56, etc.) in your case. Based on that he/she can turn to the latest research to determine the best drug to combat it. There is still no cure but remission is possible. My marker showed that Campath is the best drug for me even though my doc had already prescribed Cyclosporine. The markers are key to helping direct your treatment. I understand the latest and best research has been coming out of the United Kingdom and France. Viva la Resistance!

I had to receive treatment for breast cancer first: began treatment 5 months after dx: MTX and prednisone for 3 months. 4 months later, neutrophil counts started to decline, so we monitored for several months. They crashed over the holidays, i.e., zero, had a fever, and ended up in the ED. Back on prednisone ( high of 100 mg) and 20 mg MTX,/ a week slowly have reduced prednisone by 10 mg a week.. Seems like 20 mg a day is the threshold, once I hit that, my counts decline. Will start Cytoxan next week,with weekly labs and taper off the prednisone by 5 mg a week. This is the same chemo I had for breast cancer so the thought is it will also provide additional benefit. Will report results later. My dr is my oncologist in Seattle.

Hi Chitown, when I was on Methotrexate, I was not allowed to use Neupogen or Neulasta. I took it with Cyclorsporine or when not being treated. It can be a useful maintinance tool to keep your neutrophiles up. However it is very expensive and can be somewhat painful. Others have said to take Folic Acid and Vitamin D, especially with Methotrexate. Hope you get some relief and answers soon. Best wishes, TJTeresa

I was diagnosed with microscopic colitis this past year. The only way to diagnose it is by multiple biopsies in the colon. But the colonoscopy was well worth it for me. After treatment with a fancy steroid drug ($) and eliminating all asprin, advil, and similar pain meds, and changing my anti-depression drug (all with possible impact) I have significant improvement. I know that vague digestive disorders can be difficult to pin down, so I waited way to long before complaining enough.

I had colon inflamation and infection, have to take fiber supplement sometimes. I believe it was caused by the mtx and low neut count. Mtx slows the system, being a matabolism suppressor.

My husband too is in wait and see mode. He is said to be in the "early" stages of LGL -- tested negative for RA (X2). The problem is he feels HORRIBLE. He has joint pain esp. the hands and feet, and more recently, his right knee is so bad he limps -- fatigue, short of breath, almost constant head ache. To this point no one can say whether its related or not. Anyone recognize this cluster of symptoms?

this probably won't make you feel any better, but that sounds a lot like my husband's symptoms of RA. he had a really aggressive onset, so within a few weeks (at age 34) he went from fine to having trouble walking up straight, painful and swollen hands, back problems and more. he diagnosed with LGL a few month later when they were investigating the low WBC that mostly recovered. because his liver function wasn't optimal (still no explanation for that) they were very cautious about which RA treatment course to pursue. But he was put on prednisone and a prescription NSAID right away, and then Plaquenil and Methotrexate were added. Within a few months, his RA symptoms were almost gone. His bloodwork has come back "normal" since about 9 months after his RA diagnosis and mostly he feels normal too. Because of his age and the aggressiveness of the RA, they wanted to treat him quickly to prevent joint damage. Who gave you the negative diagnosis of RA twice? If you haven't yet, could your husband see a rheumatologist? There may be something with some of the same symptoms that he would recognize. Unfortunately there is no specialty that handles autoimmune diseases specifically, since they're often related, and LGL seems to co-occur with autoimmune diseases. Have they checked for lyme disease? We have a friend whose lingering knee problem was finally diagnosed as lyme disease and he takes methotrexate and plaquenil also. One last thought - for years before getting sick with RA and LGL, my husband would get odd injuries (a wrist or knee that hurt a lot because he "picked up a kid wrong" or other things that wouldn't cause most people pain). When he went to have the swollen and painful knee looked at, the doctor took a sample of the fluid and based on the uric crystals (?) found within, diagnosed him with borderline gout. good luck! -Deirdre

Thank you Dierdre. He has seen two rheumatolists. The first completely discounted RA because hubby has no swelling. The second is not willing to completely dismiss the possibility because of the LGL link -- but also says he would expect swelling and a positve RA Negative for lyme disease. Seeing Dr. Loughran on Monday for the first time. Hoping he has some insight. Again, thanks! Sherry

After no improvement with 6 months of methotrexate I was taken off for 3 months. I have since switched doctors to Northwestern. I was referred to Dr Winter by Dr Loughran. After 3 months of not being on anything my numbers are still declining. My platelets were at 43 my anc is 100 , my HCT is 33.3 and my HGB is 11.1. My main complaints as of late are that I get winded very easy with light exertion and am not really physically fatigued more so than mentally.I have been forgetful as of late as where I've put things and conversations I have had. I asked the doctor and she said it could be related to the anemia I currently have. They did a bone marrow biopsy to reconfim the original diagnosis that was done with peripheral blood.The treatment I just started is 300mg cyclosporine twice , 400mg avelox , and 200 mg flucanazole daily. They originally were going to do cytoxan and predisone but because of the dropping numbers from my cbc decided on cyclosporine instead. My brother and his wife are having twins this month and offered to donate the cord blood to me. I asked the doctor about this and she didn't think it would be a useful option but advised me to encourage them to donate to a public bank. My markers are cd8 +/cd5 and cd7 dim positive/ cd16 + /cd2-/cd56-/cd57-

Chitown35 My ANC was down at zero. My doctor gave me Neupogen injections - first two months nothing - he told me at least I had a good 4 1/2 years. I continued taking Neupogen 1 month and returned for start of Cytoxan and Pred. When I got to this appt my ANC was 3500, Obviously the Neupogen finally kicked in and we have played with different doses - now at 300 mcg shot 3 times week at home. Have low platelets also, with no explanation. Steady decline from 137 to 65 over past 5 years. Platelets make me nervous - like taking 2 steps forward and 1 step back leaving plts number continuing to decline slowly. I'm going to look up my markers - think they are similar to yours. Wish we could think of something to help you! Have you heard of curcumin to reduce inflamation?

Hello, After only 8 weeks Campath I am in clinical remission. I was blood transfusion dependant for a year, hemoglobin averaging around 6.2. Now my hemogloblin is 12.5 and I haven't felt this good since college days. ( I am in my 40's) now. (With the exception of general soreness from all the walking/biking and exercising I have been doing for these last three weeks) I know this treatment won't work for everyone, but get your markers checked to see if they coincide with those who are benefiting from Campath. It took me five months to get it, thanks to an aggressive research campaign by myself and my doctor. Good luck to all of you - my next follow up is in two months - we will see how I am then. Remissions have been reported lasting five years....

Congrats!!! I am thrilled for you. Please keep us posted.

Hi Ducky What fantastic news for you! How wonderful to hear you are doing so well now. Take care Karen

I am new to this site. I am a male, 64 years old and was just diagnosed this week with this disease. My hemotologist said I need no medication now but I will have blood tests, probably for the reat of my life, every 4 months. From what I am reading here I feel pretty lucky. I found this site lookinjg for more information on the disease but there doesn't seem to be a lot out there. I would like to talk to someone that may have progressed with the disease as I have. From no treatment to medication. I'm wondering about a time frame. I'm a little confused as my doctor indicated that rarely are there problems with this disease. That many go all through life without even knowing they have it. He also told me that the odds are I would die of old age before this disease would become a problem. But that's not what I'm reading here. Can anyone shed some tight on this for me? Thanks....Ray

Hey Ray! No, one thing you must remember is we are the extreme cases - do not be scared! People do live with this for years like diabetes or lupus with no major issues, but some of us do have problems occur. I sort of feel that my case was aggravated by the death of my husband, the loss of my job and the stress of it all. Before this relapse, I hadn't a problem in 8 years and Dr. Loughran told me to go away and live my normal life back then. You can stretch those blood tests out to six months or annually to save your veins/time and money. And just pay attention to any abnormal weakness or breathlessness. Kind arbitrary when you are getting older all the time and weaker too, but you will notice if you really start slowing down. Best of luck to you!

Thank you for clarifying this for me Ducky. After reading some of these post I was really worried. I will take your abvise and try to put this out of my head. Best of luck to you and all that are suffering with this disease. You will all be in my prayers.....Ray

Dear Rayd, I too have been told to live my life and that this may never affect me. Things are going well. I have a very rare form of LGLL. It is NK cell. I go to an oncologist here in CA every 2mos for a blood test and once a year I go to Dr. Thomas Loughran in Hershey,PA. I have some pain in my spleen on and off. Not bad just irratating. Fatigue is another. Nothing i can't live with. Hope all goes well for you and everyone out there. Harley

Thanks for the advise harley I hear about this Dr Loughran a lot. I assume he is some kind of specialist in this disease? Is he someone I should see so he can track my progress or lack of? Or should I just forget about this until and if I start having problems? I have read about others having problems with their spleen. I had to have mine out many years ago. I wnoder if this works for me or against me. Seems like everything is hitting me at the same time. 2 months ago I was diagnosed with diabetis. I wonder if this works for me or against me and if the 2 are related? I know that's a lot of questions but it seems like your mind works overtime at just the word leukemia. Ray

Hello again, Dr. Loughran is credited with "discovering" LGL back in 1985, he only follows the extreme cases such as the NK variety. Because the spleen is a blood filter doctors expected it would be or was affected by the LGL and this is why in the beginning when they were first treating LGL patients they would perform splenectomies. But they have found it doesn't particularly help or hurt so you should be okay without it. Diabetes is in no way related but is unfortunately a factor of aging and since you have hit middle age these things will happen. Doc told me he thinks one day this may not be called a leukemia but more like a HIV or Lupus type of disease. Because it behaves like a leukemia is why they classified it as such.Remember, sometimes the technology is too fast for the scientists to keep up therefore they are discovering diseases that may have been around a long time but we couldn't diagnose them. Now we are and they have to figure out what they are and where to categorize them and then how to treat them now that they have discovered them. Hey - you're on the cutting edge here - enjoy the exclusivity!

Dear Rayd, Dr. Loughran has an LGLL registry. He see's Tcell and NK cell patience. I was first told I had tcell. He took another look at my bone marrow biopsy and changed it to NK. As of recently he had 500 in his registry. I think it would benefit you to talk to him. Dr Loughran is a great guy who spend time answering all your questions and can also be reached by email. His address is: Thomas P. Loughran, Jr., MD Penn State Hershey Cancer Institute. tloughran@hmc.psu.edu. His research nurse is Kendall M. Thomas Baab. I can also get her email if you want it. Hope this info is of help. Good Luck, Harley

Hello My 79 year old mother was just diagnosed with "suspected" LGL leukemia. It's chronic and her only visible symptom has been unexplained weight loss - no night sweats or enlarged spleen. Her platelets are low [77,000] as is her white blood count. Her doctor has suggested some possible drug therapies. The doctor has also recommended a second opinion by another hematologist/oncologist. My mom was first diagnosed with pernicious anemia but, after a therapy of B12 proved unsuccessful, she had a bone marrow biopsy, which led to the current diagnosis. I have sent an email to Dr. Loughran this morning and registered my mom with the LGL registry. Has anyone been treated for LGL in Chicago? We are looking for a doc recommendation in the city. Thank you.

I am seeing Dr Jane Winter in Chicago @ Northwestern, she was recommended to me by Dr Loughran. So far I really like her. Prior to her I was seeing Dr Gilman @ St Joseph's hospital in lakeview. He was good but I didn't like resurrection hospital group and the hospital seemed kind of old and run down.

Chitown35 Thank you so much for the information on Dr. Jane Winter. May I ask if you simply consulted Dr. Loughran via email or phone or have you been treated by Dr. Loughran? I've sent him an email this morning and am waiting for a response from him. Again, thank you for your response to my earlier question.

eshimkus, My original oncologist was consulting with Dr Loughran about treatments and didn't seem to have an opinion of his own or at least he didn't share it with me.I asked for a referral for someone in Chicago who may have more experience with the condition and that's how I found out about Dr. Winter.

Harley....Thanks for the info...I have sent Dr. Loughran an e mail and am waiting for a response... I do have one question.......Is there a difference between T cell LGL and LGL..and if so...What does the NK stand for? I apologize for these dumb questions but this is all new to me....Thanks for the help........Ray

Harley....Thanks for the info...I have sent Dr. Loughran an e mail and am waiting for a response... I do have one question.......Is there a difference between T cell LGL and LGL..and if so...What does the NK stand for? I apologize for these dumb questions but this is all new to me....Thanks for the help........Ray

Hi Rayd, First of all there are no dumb questions. NK stands for Natural Killer cell. It is a very rare form of LGL. Most LGL is T cell. I hope that answers your questions. I am glad to hear that you are trying to see Dr. Loughran. I will see him in Sept. Good luck and keep me posted on how you are doing. Harley

Has anyone had the experience of platelets going up after taking methotrexate?

ThnKnPos That's a good question - have you gotten any responses?

My platelets stayed normal during 4 months on methotrexate, but they went down (to 100-120 range) after being on cytoxin. Almost 2 years later they are just creeping back into the normal range. Platelets have never been an issue for me. I am stable with ANC 200-500, and Hgb 10-10.5. Feeling above my average unless I have a cold. Currently lucky enough to hold out for a better drug to come along. I failed methotrexate, responded well to cytoxin but my liver over-reacted, and I guess cyclosporin isn't a good fit for me. I have common T-cell LGL, in my 40's, 6 years since diagnosis.

I was on a study, and that was the terminology. My blood counts ended the 4 month period lower than when I started. The drug didn't seem to impact my disease at all. I suppose we could say that I was a non-responder also.

Once again, I am in my 40's, diagnosed 11 years ago, asymptomatic until about 2 years ago. Survived on 44 units of blood over course of 12 mos when finally Campath saved my butt for now....did the Methotrexate and Pentostatin along the way with no improvement.

Hi Rayd, I havent posted in a very long time. My daughter who is now 21 was diagnosed with tcell lgl 3 years ago. We went to see Dr loughran 2 years ago to get a second opinion. It is very hard to become his patient but my daughters doctor in buffalo was great in getting her in. She is one of if not the youngest patients Dr L has with LGL. She is not on any meds yet and is in graduate school.She is always tired, her neut run between 600 and 1000. Recently she has been drunking aloe vera liquid and taking acai berry tablets and her hgb and hct have gone up alot. She is at 10.9 and 35 respectively, and before she started this she was below 10 and below 30. I dont know if this is a coincidence but we will take what ever we can get. Dr L hasnt seen her in 2 years but we send all her blood work there every 3 to 4 months, he is monitering her and only wants to see her if symptoms gt bad or her neuts fall below 400. He also told my daughter the same thing about living a full and long life, although she will have more of a challange because she is so young and wants to have children at some point, (if thats possible) I dont know if this helped but I thought I should let everyone know about the aloe vera and acai. mama C

I just posted the link to a relatively new article called "How I treat LGL leukemia," written by Dr. Laughran and his counterpart in France, Dr. Lamy, to the resource section on the introduction page of this web site. I'll post it here too: http://bloodjournal.hematologylibrary.org/content/117/10/2764.full

susi235, Thanks for sharing the article. Very informative. Harley

After 6 weeks of cyclosporine my anc went from 100 to 500 but my dosage had to be lowered from 600 mg daily to 400 mg daily due to lowered kidney function. Generally I feel tired but haven't had mouth sores for a while. I find my self sleeping more often 10-12 hrs and napping which I didn't use to do. I just have to go for weekly blood tests until my next visit with the onco. I hope everyone else is doing ok or at least stying the same.I was put on treatment the day I was diagnosed and have been on it since. I have noticed that prior to cyclosporine my gums were receding, they appear to be growing back and so is some of my hair (fine hairs where i hadn't had any on my head in years)

We personally saw an increase in platelets within two treatments of MTX. We saw his B symptoms improve with initial dose and then level off until they increase the MTX dose (we're on the 3rd increase in 8 weeks). The main symptom being pain and fatigue. We are working on getting into a rheumy since those symptoms have significantly increased. But we have seen a huge improvement since being on the MTX - especially his labs. For the first time in 3 years everything is within the "normal" ranges. I'm just wondering how many increases we're going to have to go through, and at what point he'll bottom out. They're trying to hold off adding prednisone to the mix. Right now he's at 12 mg. once a week. What's everyone else's doses? Did you have to go through increases before you saw stabilization in your symptoms or labs? The only problem we seem to have so far is mutant kidney stones which they say is probably made worse by the MTX. Thanks!

chitown 35 is there any chance you could go on Neupogen? It is the only thing keeping me alive after my Neutrophils went down to zero. I give myself injections everyday. Insurance doesn't like it and I don't think medicare pays for it but I don't really know. Mouthsores under control with CloSys. My new problem is low platelets with no explanation. I know the fatigue is so debilitating. Mine comes and goes. Some days just have to go back to bed. Hope you find some energetic days ahead soon.*

It's been about 9 months since I've posted but I've been trying to keep up with how you are all doing. Last January I started to see Dr. Loughran. I started to take prednisone and methotrexate and had a huge increase in neutrophils. However the side effects were unbearable. Extreme fatigue for a couple of days after the methotrexate, and such a dry throat that I would wake up several times in the night trying not to choke. Sipping water all night would help a little but really interfered with sleeping. So I stopped the meds and over the past few months my neutrophils have slowly been dropping, now about 630. But since I have not been getting fevers, infections or mouth sores Dr. Loughran has not put me on any medication at this point. In the meantime I started to see a naturopath. I've been sticking to a strict diet but still am not feeling a whole lot better. My muscles and joints are not as painful but the fatigue and feeling ill in general still are the main symptoms. Dr. L. did not think the fatigue was from the LGL because I'm not anemic. Does anyone else have terrible fatigue without anemia? Also the more I exert myself the worse I feel. Anyone else feel that way? Still have the brain fog and forgetfulness. It's getting difficult to not be depressed over being so unproductive. I am very glad to be going to Dr. L.and I would highly recommend him to any who can travel to Hershey, Pa.

Hi ya'll -- just celebrating five months remission - will see doctor on Aug. 31 to check CBC. Iron (ferrin) has been running high, so they did take a unit of blood out of me two months ago. Very interested to see if they have to do it again. Have been feeling really good overall, I miss the high I was on when I went into remission initially, but my energy level is still fantastic - I am on Day five of nursing school, if this LGL is stress related in anyway, we gonna find out real quick! I will post again after doctor appt.

Okay, moment of truth - went to Doctor today, numbers are still good -13.1 Hmg which feels wonderful, but I could tell something was off - ( excessive hair loss, mild headaches) turns out my ferrin (iron) levels were extremely high over 900 so I will be having another phlebotomy to remove a unit of blood. My lymphocytes and other implicating numbers are still low, but they may be creeping up again slowly, which is creeping me out since I am fully involved in nursing school now. I plan on living a while longer and this LGL better not screw up my plans to be an oncology nurse!!!!!

Good Luck Ducky. I'm sure I can say that we are all cheering for you!

Hello My doctor wants to put me on Campath treatment. I am not anemic but my ANC is "0" and has been between .2 and .0 for several years. I get a lot of colds and infections and my treatment of tacrolimus (Prograf a substitute for cyclosporin) has not worked and all the other types of medication that others have said were used in their treatment, have not worked. I really don't want to go to the infusion. Has anyone had any sucess with Campath? I have had LLgL for about four years, I am retired and 65 years old. I'd appreciate any feedback anyone can give me. Thanks

Okay you gotta read the blog - I am a success story on Campath so far. Five months remission and feeling better than I have in 20 years!!! It is a painful shot at first until you get used to it. It is put into your leg to start - that is where the war begins - then they move to infusion which I tolerated very well. It was only like two months before my numbers started climbing. This is a targeted therapy and apparently fairly successful - up to five years remission reported. The only downside so far for me is I am making too much hemoglobin which is resulting in high iron counts so I go in every two months to have 500ml taken out. Hopefully, my body will stabilize and I won't have to do that anymore. (cause it kinda hurts) Good luck!

After 4 months of cyclosporine with continuing cytopenia I am stopping the cyclosporine. My hgb was 8.5 and they transused me 2 units, I feel much better now. My platelets were 42 and neutrophils were in the 100-200 range. Next Friday I go back for my 4th bone marrow biopsy. I have tried methrotrexate and cyclopsorine so far. The cyclosporine has done a number on my gums although i haven't had any canker sores on it. Hopefully that gets better now that i'm not taking it. So the next step is up in the air. It may be cytoxan but they chose cyclosporine previously due to the low counts. They say I may be developing aplastic anemia. The doc mentioned the next try may be the cytoxan or ATG. I asked about Campath and she said she would look into it. The previous post about Campath sounded encouraging. Congrats Ducky! My doc said my numbers have Dr Loughran a little puzzled. Has anyone ever heard BMT that may have helped with this? They recently tested my siblings and they were both 4/6 and not suitable for donors. Luckily my insurance has covered much of this. I couldn't imagine not having any.

My understanding is they haven't had much luck with the BMT on this leukemia - it was once tossed around in my case. Do they know which defective protein they are dealing with in your case? I don't know a lot of the terminology - but this is what helped in my case for the targeted therapy. They may not have one yet for your specific case - but if they haven't tested I would ask, and ask, and go to another doctor and ask.......were you at 8.5 when they transfused you? That would be where I would end up after two units and I would be feelin' good - I didn't know what feeling great was at 13.1 !

ChiTown My mother is also being treated at NWestern Hospital, but it seems she has a difft doc than you. My mom's doc is Dr. Ma - she's only been seen for the past three months [which was when she was diagnosed], but Dr. Ma is also treating 16 other patients with LGL, and I got the impression all of them were in Chicago. Maybe a second opinion in your case might be helpful.

ChiTown35 - you mentioned that you may be developing aplastic anemia. I was diagnosed with that last fall and given ATG. My diagnosis was on the basis of hypocellularity of the bone marrow, down to the 0-3% range just before the treatment. This was almost a year ago and the response was great - dr. says I no longer can be considered aplastic anemic. The treatment itself wasn't pleasant and it took me several months to regain strength, but apparently quite worth it. Now if I could just get those ANC counts up. I didn't realise it at the time, but T-LGL and aplastic anemia are not mutually exclusive - you can have them both!

Is there anyone out there with NK LGL?

I just finished day 3 of 4 for ATG treatment. my temperature has been bouncing around from 96.7 to 103.9. I guess thats a sign that its working. my platelets dropped to 14 and my hemoglobin to 7.5. I was transfused some platelets and will be getting my 3rd unit of blood today. On the positive side even though the numbers were low this was the first time my neutrophils were higher than the lymphocytes.

Harley, I was diagnosed 8 years ago with NK LGL and am also in Dr. Loughran's study. While LGL is rare, it seems NK LGL is even rarer. I have not met nor been in touch with anyone else with this disease. How are you progressing.

pjselowe,I can't believe I have finally connected with another person with NK lgl. I was diagnosed over 3 years ago. So far I am not on any meds and have my blood work done every 2 mos. How are you doing? Do you have any unusual symptoms? My biggest complaint is fatgue. I am also anemic. Thank you for posting!

Harley, I was diagnosed July 2003, and I was 53 years old. My local oncologist immediately referred me to Dr. Wierda at M.D. Anderson. My initial symptoms were fatigue, edema, and elevated temp. By the time I was evaluated at M. D. Anderson my white count had begun dropping (toward normal levels), the edema had left, and my elevated temps had also returned to normal. My neutrophils were at 5% at the time of diagnosis with my absolute neutrophil count at 1.2. At that time I was being seen locally every 3 weeks. At almost every visit, my counts were a little better than the prior visit. It took almost 3 years for all my blood work to return to normal levels. My fatigue left about 9 months after diagnosis, with each month being a little better than the month before. At diagnosis, I was determined to have aggressive NK cell leukemia. When I didn't die in 45-60 days, the aggressive was removed from my diagnosis. I am now seen every 6 months, and my blood work remains at normal levels. I do not experience fatigue - except what I would expect at my age after a long, hard day. I have never been on any kind of meds. I did have two groups from my church pray with me in my home prior to my visit to M.D. Anderson. I know I am very blessesd to have remained asymptomatic for so long and to be able to live a normal life. Knowing you have a "smoldering" leukemia can give you the fear that the status will change any day. But as with everyone on this website, you just take it one day at a time. I was delayed answering your note as I was on a mini-vacation with friends doing some hiking in the North Carolina mountains. Everthing was beautiful, and I tried to appreciate all of it!

Great story. I am glad to hear you are doing so well. It gave me comfort to read your words. I also feel blessed that I have not had to go into any treatment thus far. I read all the messages and pray for those who are. I read recently about a new type of possible treatment for CLL. Although defferent than LGL it may help all of us some day. I wish there was a better way to communicate with you. It's just nice to know someone that relates. Continue to have more wonderful hikes. Best wishes

Harley, be sure to let me know how your next doctor's visit goes. I return to see my doctor in December. However, I am in search of a new physician. My original oncologist retired, and my current oncologist is lacking in many areas. Hoping your anemia and fatigue improves.

pjselowe, I am not sure where you live but I am in CA. I get my counts done again in Nov. If you can get ahold of Dr. Loughran, I am sure that he could recommend someone. He did for me, although it was over an hr. away. I decided on a local Dr. and will rely on Dr. L if something changes in my health. Thanks for keeping in touch.

I developed aplastic anemia after the cyclosporine treatment. That was stopped and 2 months ago I was given atgam or h-atg. I am still waiting to see if that helps. I have been staying between 8-10 Hgb and 16-26 platelets. I usually feel out of it around 8 and and need red blood. The HGB slowly drops around 2 points in 2 weeks regularly if not a little more. I have been getting neulasta biweekly . My neutrophil count will not stay steady. Currently I'm at 300 last week I was 1000. My Dr has confidence that a bone marrow transplant can cure both the lgl and the anemia and apparently Dr Loughran is on board my with the treatment plan. Pending insurance approval I will let you know how it goes. Did anyone here have to stop working due to treatment? I am still working 30-40 hrs a week to pay the bills and keep my insurance. Its starting to wear on me though.

I was put on Cyclophosphamide almost 2 weeeks ago and so far haven't had any side effects.I will see my oncologist next Tuesday to see how it is working. Is anyone else taking this and how did or is it working?

I took cyclophosphamide for 2 months a couple years ago and it worked great except I had liver toxicity, which is quite unusual, so had to stop treatment. I had about 6 months partial response. They won't try that drug again, unless we are desperate, then maybe try a higher dose for very short bursts -- but that is just speculation and there are probably better options. By the way, I am having a spontaneous and dramatic improvement! Hgb up gradually to 11.3 and my spleen has shrunk up inside my rib cage and I feel like I have muscle strength and some endurance. WBC's are still low (ANC at 600), so I know I'm not cured, but it is so comforting to feel like my body can still fight back! I've always had ups and downs, but usually my labs and spleen don't correlate. Good luck!

Hey, I am from Hungary, and my boyfriend has this illness for one year. He is taking now cylophosphamide since the diagnosis, in the first half year nothing has happened, but in the last 4 months he has started to take "alga" as additional natural treatment,and his Neutrophil started to grow, and his Lymphocite to reduce, so in a good way, this improvement is continuously going, small steps but Steps!!and we are really happy because of this! so I can honestly recommend you this natural help to keep you in balance, or to be better! Here is a link about this, the name of these products are: "Creation" and "Recreation" (you need to take two different for morning and for night)http://www.organicmission.hu/uj/?pid=aloldal&pid2=uj or for any question you can write me here: edit.domoszlai@gmail.com for him it has worked, maybe for others also can help! I really wish all the best for you!!!

my husband was prescribed a supplement called MTX-Support (http://www.theralogix.com/index.cfm?fa=products.mtx.default&dvsn=rheumatology) which is specifically designed to replace the nutrients Methotrexate takes out of your body. Later (hair loss being the most bothersome symptom) he was also prescribed Leucovorin (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000652/). Some people here have had doctors say the folic acid supplements may reduce the effectiveness of the Methotrexate, but that wasn't my husband's experience (his primary doctor is a Rheumatologist, and MTX is a commonly prescribed treatment for RA) -Deirdre

To Pruss, did you get any other side effects after taking Methotrexate for over a year (like weight loss and others)? Did your Lymphocytes count also become normal? Herman

Thanks for the information, Pruss. I am very happy for you that everything is normal now. I hope your hair will grow as before. As for me personally, hair is not really a big thing. I always have my hair cut very short anyway.

The cyclophosphamide is working great.My iron count was 23 week before last and 23.7 last week.This week it is 27.I've only been on 50 mg a day for about 5 weeks.What range is the normal iron count?Does anybody know?

I checked out the Hungarian site referenced by Edithu- it is a franchise, but I did translate: the "Alga" referenced is Klamath Lake blue green algae, from Oregon: here is the US link: http://www.klamathbluegreen.com/ I will touch base with my naturopath on taking this.

Hi everyone I haven't posted in a while, but want to update on my 26 year old son. He's doing well after more than 2 years with T LGL. At the start he was really bad with HB of 43, requiring hospitalisation & immediate transfusions. It was a terrible time of uncertainty, looking back. He started off on Prednisone by itself & then, after 2 months LGL was diagnosed & he began Methotrexate, initially at 7.5mg/week, plus Folate. Without his markers improving, MTX was increased to 10mg, then 15mg within 2 months. Slowly things started to improve: HB, neutrophils, lymphocytes, & platelets. In all he had 38 transfusions in 4 months (if HB <85), but they raised his iron to crazy levels (3397 at the highest). Normal Ferritin levels are <300, & we knew >1000 is dangerous & can cause organ damage, tho his haematologist told us they fluctuate quite a lot & he wasn't overly worried. Venesections started, & he now has them every 2 weeks - Ferritin now down to around 1000. Only because his HB levels stayed up could he tackle the high iron with venesections, otherwise he'd have needed an astronomically expensive chelation drug. He's since stopped taking Folate, & the plan is to slowly reduce the Methotrexate once iron levels are normal. He has fortnightly bloods (with the venesections), & sees his doc every 3 months. Current labs are HB 138, Neutrophils 1.99, Lymphocytes 2.49, tho Platelets are still low at 118. He looks really well & lives life to the max, but is wary of his health status with his LGL journey & not taking anything for granted. We're so thankful for where he's at now & supporting him 110%. All the best everyone & keep positive. Karen from New Zealand

Long time member here, I was in the ever so popular state of limbo with a dx and still there. I was on long term disability for two years with (what seems to me) extreme symptoms and was eventually forced off disability and now back to work. I am struggling with weight gain (roller coaster more like) and living a reality nightmare. I heard of a new site called http://socialpatients.org heard they are a new site for caregivers and patients to share stories. I'm giving the site chance. God bless all!

Been a while since I've written anything but am wondering if anyone has had success or not, with taking Cytoxan? Still having no symptoms other than fatigue but ANC is 380 and Dr. recommends starting treatment. The list of side effects for Cytoxan scares me.

Cytoxin was a complete waste of time for me but nothing has really worked. I have given up all treatments now for over a year.... Juicing and eating healthi-er lol but really just dealing with my symptoms. I have started to reach out to groups for support.

Linda, I took Cytoxan for a short period of time. My counts did go up temporarily then back to usual lows. As you know, you can only take Cytoxan for a short period of time. I was also being treated for breast cancer at the time so we thought it would be beneficial. But unfortunately, it did not help. Regards, Elizabeth

SunEnvy & Elizabeth, Thanks so much for your response. I have been juicing daily although the dr. warns of bacteria in raw juice. Also I see a naturopath weekly who helps with herbs, etc. I'm sure it helps my overall health just not the lgl & neutrophils. The dr. wants me to be on the Cytoxan for 6-9 months and he does admit that it might not help at all. Has anyone heard of any clinical trials going on for LGL?

I saw a few things posted a few years ago regarding bone marrow transplants. Anyone have any success stories?