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smd71 Message
19 Mar 2010, 08:16 AM

Hello, I see that we are the only two members on this site. I have just been diagnosed with Large Granula Leukemia, and like others, I am looking for some other people to share experiences with. I hope you are currently as well as can be expected and look forward to conversing with you.
ddixon Message
20 Mar 2010, 02:47 PM

Hi smd71, how nice to hear from someone else, even if you are 12,000 km=7500 miles away! It is actually my husband with the LGL leukemia, and the one thing everyone says is that he doesn't look or act sick. we got so little information, even from the oncologist, it's really frustrating. And as you've probably found, there's very little even on the internet that doesn't require a medical degree to understand. How did your doctors find this diagnosis? In our case, when he was diagnosed with rheumatoid arthritis about 5 months ago they ran a lot of tests, which showed he had very low white blood cell count at first, then low, then back to okay range. His liver wasn't functioning properly, and when they did an ultrasound on that they found his spleen is moderately enlarged. That made them diagnose him with Felty's (RA + neutropenia + splenomegaly). So to get an explanation for the fluctuating WBC, they sent him to a hematologist/oncologist, who sent him for a bone marrow biopsy. The hem/onc doc was interested/suspicious because there's a lot of weird rare diseases in my husband's family. And yes, the biopsy found evidence of a small number of these large granular lymphocytes. But because he's already on methotrexate for the RA, it hasn't changed a thing. I'd be curious to hear your experiences so far, and if you have any useful summary information that would be great too :) the links I give people are the wikipedia entries on those diseases, which are pretty skimpy and technical enough it tends to just freak people out more.
smd71 Message
22 Mar 2010, 07:18 AM

Hello, Thankyou for replying. My history is only small. I have been on medication for depression for a number of years. I was experiencing headaches and severe fatigue. I complained to my dr about this often, but it was brushed aside. Finally, I requested a medication change as I thought it was side effects from my medication. This was just before Christmas 2009. I went for a review in January, and my dr suggested we did some blood test just to make sure there wasn't anything else going on. Well, next thing I know I am being referred to an oncologist and booked in for a bone marrow aspiration. That all took place. After a three week wait for the results, I was told that I had stage 4 non-hodgkins leukaemia, however, I wasn't displaying any other symptoms. the onc was totally confused. Referred me to a haematologist in the major capital city. I was admitted to hospital for further tests including another bone marrow aspiration, a CT scan and a PET scan. Only the bone marrow came back negative. To make matters worse, it came back with a different story to the previous bone marrow asp. Talk about confused. So, basically it is my bloods that are all up the creek (oops, sorry an Australian saying, which means out of whack) My specialist are very confused. So have decided to go with LGL. I commenced Methaltrexate 5 weeks ago and have weekly bloods done. I am also a nurse, so my doctor gives me copies of my results. My bloods haven't changed. I have a specialist appointment this week, so I hope to get some more answers. In regards to information, as you say there is not alot on the internet. I understand there is a register for LGL sufferers in Florida, USA. They had a very interesting site with logical and easy to understand information. I have come to understand the rheumatoid arthritis is a common link with LGL. I am only 40 years old. (actually, I found out my first blood results the day after my birthday. Welcome to the 40's) I remain positive. I have a fantastic family. My husband is very supportive, my 11 year old daughter is tremendous and constantly amazes me with her ability to understand. My extended family are very close and also supportive. I too look very well, and I don't feel sick (only when I take the medication, then I can be nauseated for a couple of days afterwards), but I am still at work. My doctor says I should work from home as my neutrophils are practically zero. I have started to put things into place for this to happen, but I feel silly doing it. I don't feel sick, but it is approaching winter here, and other people in the office will start getting colds and the flu extra. Anyway, I hope my wee message is easy for you to understand. I hope we are able to help each other with information. Has your husband's bloods improved at all with the meth? How long was he on meth for prior to being diagnosed with LGL? Take care and have a great day.. Sharon
smd71 Message
22 Mar 2010, 07:19 AM

Oops, I mean only the bone marrow came back abnormal, everything else was negative. Sorry!@!
sarasotap Message
22 Mar 2010, 11:48 PM

My name is Michelle-I also posted under this thread and couldn't believe there was another person in their thirties with LGL. I have Chronic T-Cell large granular lymphocyte leukemia-I was diagnosed last May 12th -I first started prednisone treatment and I have been on it for about a year. I am still not responding so we have added chemo-oral-methotraxate-I take it every Friday and have been on it for a couple of months with still no improvements. We are talking about upping the chemo-I have to get off these steroids because of all the side effects... What are they doing for your husband? Is he experiencing symptoms? I had-took almost a year for them to figure out what was going on! Would love to hear from you-your husband is the first person in their 30's that I have come across-most likely you already know this is a leukemia that is found in people in their 60's...
ddixon Message
23 Mar 2010, 12:30 AM

Michelle, because my husband was diagnosed with rheumatoid arthritis first, he was already on methotrexate and prednisone. We're not really sure which symptoms are due to what disease, but the most bothersome symptoms were joint pain/swelling/stiffness/numbness and whole body weakness/fatigue/dizziness. His hands are still swollen, but not too badly most days, he's still a bit stiff in the morning, though the mornings he starts by swimming (in a very warm pool) he feels a lot less bothered. He hasn't had the recurring infections etc, though that's what worries us most (because none of his docs has given us a thorough answer of what we SHOULD be worried about) Will a minor cold become serious in him or is it that he'll catch every cold going around? The symptoms he has now may be symptoms that the meds haven't relieved or symptoms that the meds are causing as side effects. He takes something like 15 pills a day now, but about half of those are supplements to counter negative side effects. His appetite fluctuates (most likely prednisone), he has trouble getting to sleep and staying asleep (could be anything), and he feels like his body and mind are just a little slower than they used to be. Then there's a few oddball symptoms that baffle us but the docs wave off: being much more sun-sensitive and getting dark freckles on his lips, a bizarre crunching (not cracking) sound in his neck sometimes that is so loud the person sitting next to him can hear it, and we think his speech is more slurred than it used to be. He also gets flareups (usually a weekend) where he's very tired and just wants to rest, and he complains of feeling wrong. Thanks for joining the discussion - I definitely wonder if younger people (in 30's and 40's) experience LGL leukemia differently than the traditional diagnosed age (50's and 60's) -Deirdre
ddixon Message
23 Mar 2010, 12:38 AM

Sharon, it almost seems like with a very rare disease like this that there can't be a "typical" case, but what a different experience you've had! I'm glad it's managed, and that the diagnosis they settled on is a relatively benign one. my husband's WBC is being monitored every 5 wks or so when he sees the rheumatologist anyways (because of taking the methotrexate) and the levels must not be too far off because he hasn't said anything. Of course the oncologist hadn't communicated the diagnosis to the rheumatologist yet, so from now on they'll hopefully look at it more critically. I'm not sure what your specialty is for nursing, I ironically used to analyze medical databases on AML and CML cancer so I know some of the lingo. But I never knew that there were "lazy" leukemias where a wait-and-see approach was actually the norm! Mentioning the word leukemia to family and friends sure makes them panic - I've taken to explaining it as a blood disorder *roll eyes*
sarasotap Message
23 Mar 2010, 01:11 AM

DDixon- Personally I experience a lot of tiredness! I nap, go to bed early, and still feel tired! When I take methotraxate on Fridays-forget it-I sleep the weekend away, literally. Where LGL does mimic RA that is one of the things they tested me for. I have joint pain and my joints are swollen. Things progress when I am tired. As for the sunspots-methotaxate causes you to be more sensitive to sun and I was warned to stay out of the sun. You mentioned your husband feeling 'slower' -that is part of the fatigue. Prolonged fatigue can really cause a lot of issues. Prednisone is know for making it hard to sleep through the night, among other side-effects. LGL is literally a wait-and-see leukemia, it has only been recognized by the medical community since 1978, and where it is rare-there is not a lot of attention paid to it. I went to one of the few clinics that specialize in LGL-the Dana Faber Cancer Center in Boston, MA. Luckily I only live about an hour away so I have had the option to work with Dr. DeAngelo. He has been a little baffled at my case because 1-I am young 2-I am not responding to medication like they planned. I do take a precautionary antibiotic because before I was diagnosed I suffered from infection after infection. I am careful about who I expose myself too-I don't hang out with sick people, anyone who comes to the apartment must use hand sanitizer, I eat a diet with lots of Vitamin C, D, & B. When I do get an infection my LGL feels a LOT worse and it takes a while to get rid of it. Not only does LGL mess with your immune system but chemo and prednisone do too.
smd71 Message
24 Mar 2010, 06:19 AM

Hi Deidre and Michelle. How wonderful to have someone else to talk to. Deidre, I agree with Michelle, I was also told to remain out of the sun. (which is very hard in Australia) I am not on Prednisolone, which I am happy about especially with all the side effects. I just received some more blood results, they don't look any different to me. I go to see my specialist tomorrow. Wish me luck. Fortunately since my diagnosis, I haven't contracted any illnesses. I have my good days and bad days. I'm having a great week so far. Minimal nausea, (only one morning where I actually vomited) and not as much fatigue. Michelle, interesting to read that we are both young and similar with our diagnosis. Dr DeAngelo, did he explain to you how he would perceive a positive response to medication? What would he expect to happen to your blood counts etc? Do you have blood test regularly? I have started to make myself walk in the evening. Maybe that is why I am feeling better in myself. Have you tried exercise. Deidre, how does your husband manage with sore and swollen joints and exercise. Does he see a physiotherapist to assist with this? Sharon
ddixon Message
24 Mar 2010, 03:37 PM

Sharon, sorry to hear the methotrexate causes you so much nausea! I just realized I never mentioned my husband's age in this discussion - he is also only 35. He is a rare case of rheumatoid arthritis (symptoms came on abruptly and he's much younger than usual), has a rare subset called Felty's Disease, and then was diagnosed with the very rare LGL leukemia which is most commonly found in people in their 60's. Most of these diseases are more common in women too. As far as my husband's experience with methotrexate (abbreviated around here as MTX, because meth refers to an illegal drug :) - they didn't put him on it right away because they were awaiting an explanation of his compromised liver function since MTX can damage the liver and there's other choices for treating RA. But they started him on NSAIDs and prednisone right away, and those both helped reduce the swelling and joint pain. Once he was ramped up on the MTX they reduced the prednisone. His WBC (not sure of the exact kind of white blood cells now that I know more about it) went back up in the first few months after his RA diagnosis before he even started taking MTX. That's just a weird feature of LGL leukemia - the levels naturally fluctuate and they don't seem to know why. He'd like to be off the prednisone entirely, and he wonders how they can tell what's working and not since he's taking so many different meds (up to 15 pills a day, about half of which are supplements which help counter deficiencies that occur in RA and from taking MTX) Sharon, that's something you might look into - maybe there's a supplement you can take with your MTX that will help you feel better. In particular, MTX effects your folic acid and vitamin D levels I believe, and his RA doc also has him taking a lot of Fish Oil (omega-3). As for the exercise, when he first got diagnosed with RA he could barely curl his fingers and he would move like he was twice his age when he first got up in the morning. He kept baby-ing himself so he wouldn't make it worse, but his doctor encouraged him to stretch and move, which actually made it better. Now the swelling and joint aches are pretty subtle even first thing in the morning, and most people wouldn't even know he's got RA. On mornings when he swims he feels much more limber the rest of the day, and he doesn't like to go more than 2 days without swimming. He also swam in high school, so getting back in the pool is good for his body and mind, if you know what I mean :) Deirdre
nlbl Message
24 Mar 2010, 06:58 PM

My husband, age 33, was also recently diagnosed with LGL. Being so young, with two small children, has made this a very daunting discovery, especially when you read about a 10 year life expectancy online. We are going to see Dr Loughran in PA & hopeful he has a plan that will help us be more optimistic about the future. His local oncologist currently has him in the wait and see treatment phase. Has anyone met with a nutritionist re improving LGL symptoms? And/or asked your doctor about the claims online about acai juice, curcumin supplements, etc? Thanks
ddixon Message
24 Mar 2010, 08:21 PM

wow, we're really collecting the 30-40 age group! I'm sorry to hear about your husband nlbl, I can completely relate. Our kids are age 3, 4.5, and 6 (yes, 3 in 3 yrs) and to hear the word "leukemia" is so scary. My guess is that the "median survival time of over 10 years" is because it is commonly found in patients in their 60's and 70's for whom another 10 yrs is not a given. For all the patients who are diagnosed in their 30's, I'm sure they have a much longer life expectancy. But that's just my interpretation based on the fact that all our oncologists aren't worried about us and that LGL leukemia is described everywhere as "indolent". I hope you get some more concrete information from Dr. Loughran, and if he can verify that the 10 year number is related to age at diagnosis that would be great! Hang in there, and glad that you found us so quickly. A month ago when my (35yo) husband was diagnosed I could barely find anything but posting on a few message boards has quickly created a little community here. Now when someone googles LGL leukemia, they should find us right away :) -Deirdre
sarasotap Message
25 Mar 2010, 11:07 AM

I have worked with a nutritionist and I eat foods that hormone and antibiotic free-just because I didn't think adding more chemicals to the mix was a good idea. I also stay away from sugary foods because I have been on prednisone for almost a year and methotraxate for a few months-which can cause diabetes is some people. Exercising had been hard for me as my joints are in a lot of pain and my muscles burn (like when you have held something too long and you have to let go-that feeling) so I do 10 minutes here and there. Of course with prednisone weight gain has been an issue-As for the acai juice-that seems to be the latest 'super berry' so its hard to know what claims are real and what are hype. I would love to know what the doctor says in PA if you don't mind sharing as I have not made improvements and exhibit symptoms...
nlbl Message
25 Mar 2010, 04:21 PM

I know this is the morbid part but....has anyone had any luck getting life insurance with LGL? MY husband has it through his current employment but am just wondering.
ddixon Message
25 Mar 2010, 06:14 PM

nlbl, we haven't even considered that yet. Though I'm guessing the rates are related to specific mortality rates of the condition (and in this case, probably the more common condition that LGL leukemia falls under, which I'm guessing would be chronic lymphocytic leukemia = CLL). here's a website (from 2003) that discusses the specific factors for determining the insurance-related risk of CLL: http://www.risktutor.com/demo/newsletters/june_03.html Our primary concerns have been about changing health insurance with a (significant) pre-existing condition, and how that will work getting individual or small-group health insurance. The new health care thing will cover that possibility - eventually. COBRA may be a better option cost-wise if we can get it subsidized, since my husband is in the process of changing jobs and our current health insurance coverage will end in May *sigh*
MamaC Message
26 Mar 2010, 02:43 AM

Hi I just joined this website group. My daughter just turned 20 in Nov and was diagnosised with LGL last year Dec 2008 right after she turned 19. She is a full time student away at college just completing her 3rd of a 6yr doctorate program and is not on any medication yet. We too had a terrible time with diagnosing her disease and finally changed hematologists and met one who correctly diagnosed her.He refered us to Dr Loughran. Her neutrophils are between 400 and 800 and her HGB, HCT ranges between 8.5 to 10, and 24 to 29. She is always tired and I really don"t know how she manages to go to all her classes and labs everyday. She tries to exercise everyday as she says it gives her more energy on those days. She also tries to eat healthy, no red meat or fried foods and alot of whole grain and vegatables. She has seen Dr Loughran, a LGL specialist , in Hershey Pa but only once in Dec 2008. He is monitering her blood work which she has taken each month. I believe she is his youngest patient and it appears she has had this disease prior to 2008 as far back as 2004 after getting lab work from that year, of course her pediatrician never even looked at the high lymphocyte count at that time. Her major symptoms are chronic fatigue and gets upper respiratory infections every once in a while, but she has antibiotics that, so far, take care of the infection. I am interested in Deirdre's husbands visit to Dr Loughran and what he says as fas as wait and see. My daughter has a very positive attitude and outlook and is very inspiring Hope to hear from anyone Mama C
sarasotap Message
26 Mar 2010, 03:33 PM

Mama C-your daughter sounds amazing-after we went back into my blood work history and other things and agreed I have has this for awhile. It took me a year to get a diagnosis-they tested me from RA to Lyme Disease. I agree the fatigue it hard but I am still working on getting a better result. I go every week or every other week in order to get blood taken. My counts continue to be off but we are hoping that will turn around soon. I did a lot of research on Doctors and Dr. Loughran is well known. If you don't mind me asking-what caused you guys to go the dr in the first place? sarasotap
nlbl Message
26 Mar 2010, 04:07 PM

My husband began seeing the Dr about his gallbladder (which was removed) & then again because his liver counts were off & he had a week bout of major fatigue & jaundice. I'll let you know how it goes with Dr Loughran next week. nlbl
smd71 Message
27 Mar 2010, 02:45 AM

Wow, I have been off line for a few days and look how many members we have now!! (not that it is good for us all to be unwell, but at least we have found others like ourselves) I went to the haematologist yesterday. He is disappointed with my lack of response to MTX. He is not worried, as my bloods are stable. They have not worsened. We (ie my mother, daughter and myself) have planned a trip to the UK for 4 weeks. The specialist says that I am stable enough to go. So that is great news. The specialist had a medical student with him, and described my condition as an auto-immune deficiency/cancer. Has anyone else had this described to them? After our return from the UK, if I continue to have a poor response to MTX, then I am to commence cyclosporin. I will have to look this up as I know nothing about it. MamaC, I am sorry to hear about your daughter. She is very young. I agree with you, how does she manage to continue attending classes. But then, I guess we all learn how to cope with this fatigue and get to know our limitations. I can't believe how young we all are. My specialist said that we are likely to continue having long conversations together for another 30-40years, especially if the condition is controlled by meds. I agree that the short term prognosis is due to the older sufferers. I am quite positive about all of this, and really it is just a health hurdle, one that I will learn to live with. I just have to get the family used to it now, they tend to want to wrap me up in plastic. I am keen to hear what your specialist says, this Dr Loughran seems a popular person. Make sure you pick his brain, or even ask if he knows where we can get more information on our condition. Regards Sharon
ddixon Message
27 Mar 2010, 03:56 AM

Sharon, we definitely haven't heard it described as "auto-immune deficiency/cancer", but that doesn't surprise me. there seems to be significant overlap between rheumatoid arthritis and other autoimmune diseases. details can be found in this article (very technical, but I'm starting to understand more of it after only 1.5 months) http://theoncologist.alphamedpress.org/cgi/content/full/9/3/247 I'm also "happy" to hear from so many people, and it's interesting that everyone is in the same age range for now (there's another person who has joined the community without posting so far who is 40). What a great resource to be able to compare notes on what each has been told by their doctor, especially since each doctor doesn't seem to know that much about it. And very interesting to have a member going to see Dr. Loughran - now it feels like that person is going on behalf of all of us :) what's everyone's experience with allergies? My husband took Claritin-D for something like 5 years, and the RA symptoms started almost immediately after he stopped cold turkey. He wonders whether this long-term allergic-reaction-suppression could have somehow suppressed the symptoms of RA/LGL leukemia or whether they somehow triggered it. Don't expect it to be related, but would be interesting to hear (maybe I'll start a separate topic -Deirdre
sarasotap Message
27 Mar 2010, 12:42 PM

I too have been responding very little to the methotraxate! It has been so frustrating! I don't get nauseous though because they gave me an anti-nausea med. I however do get more tired and take it on Fridays so I can sleep over the weekend. Does anyone else feel that way? What about hair loss? Since starting the prednisone and methotraxate my hair was so thick I would have to have it thinned-now it barely holds a barrette! It can be depressing because I have put on weight due to the prednisone, have super thin hair, and always look tired-looking at pictures from a year ago make me cry and seeing pictures now just upsets me-does anyone else struggle with this? How do you work through it? Thanks everyone for sharing! It makes a big difference not to feel so alone!!
ddixon Message
27 Mar 2010, 03:09 PM

ugh, totally with you on the hair loss! I'm not sure which med is causing that lovely side effect, but my husband's hair is thinning a lot more rapidly than it used to. It's especially frustrating because men get all weird about going bald and it seemed like he wouldn't have to deal with that for many yrs and now he's going to have to learn to be graceful about it. I'm also his hairdresser (have been pretty much the only one cutting his hair for the last 15 yrs) and I'm at a bit of a loss how to transition :) My hubby has tried several shampoo/conditioners and some make his hair more fluffy and others make it lie flat which exaggerates the hair loss. I don't know of any supplements that would help, the ones he's on (omega-3's, folic acid, vit D, and some mineral multivitamin) aren't preventing it. It must be a really different kind of hard for a woman to have those side effects, I'm sorry! I can imagine that it's also hard to have even a female doctor appreciate how much that would effect your self-image because they figure you've got bigger issues, but it is your daily quality of life. But try mentioning the specifics to your doctors anyways, maybe there's something you can try.
MamaC Message
28 Mar 2010, 02:52 AM

Hi everyone, Thank you all for responding to my post. To answer your question sarasotap, when my daughter turned 18, I had her switch to my general physician, who is also a personal friend.She had just completed her 1st yr of college and complained of unusual fatigue and night sweats. At first I thought it was just college life, but as I did more research the night sweats are not normal Our Dr. did a routine exam and full blood work and called me the next day to tell me how out of wack her bloods were and sent us right to a hematologist/oncologist. Unfortunately for us, this Dr misdiagnosed her after 6 months of testing and unnecessary prednisone therapy. But I found a wonderful Dr near her college who diagnosed her correctly and got us in with Dr. Loughran. As far as allergy medicine, she never really took anything She was an amazing athlete in high school and was offered scholarships to Division 1 schools, which she turned down so she could focus on her studies, which payed off as she has a 4.0 after 3 yrs of college!!She has some good days and some bad days. She is determined to stay at her college which is 3 hrs away from me, and at least try to lead a semi normal college life. To address the hair loss with the methotrexate, I am a pharmacist, and have many customers that are on metho for rheumatoid arthritis. Since my daughters diagnosis, Ive been asking them about side effects and hair loss. For the most part,they all said that their hair thinned out, but after about a year it stayed about the same. I also have some customers on cyclosporin, one for a kidney disease and the rest for cancers. Actually, these customers have had very few side effects compared to methotrexate. If anyone has anymore questions about meds please ask away, if I don't no the answer I will find it for you. Also, to address the autoimmune statement, my daughters hemalologist told us that LGL shouldn't be classified as a leukemia, because it doesn't really fit the description. He also said that in some countries it has been reclassified as a specific blood disorder, I can't remember what he said though. I have read extensive articles about research and studies on LGL and did any of you know that there have been at least 2 cases of people spontaneously getting better with no meds. They dont no why it happen but it is documented. Also there was one article on acai berry tablets and how one persons levels got much better after taking it for 6 months. I have access to certain websites because of my profession so if I can help any of you get specific answers I will. Keep in touch, this is so helpful to me just knowing that there are others in the same boat as my daughter.
smd71 Message
28 Mar 2010, 05:23 AM

How wonderful to have a professional person on board. I haven't had any issues with hair loss. I have only been on the meds for 5 weeks, I take number six on Monday. It is certainly an issue that worries me. I love my hair. I distract myself with it instead of concentrating on the weight gain. Did I say I have started walking. I try to walk three times a week at least, and I must admit, I have been feeling much better. Has anyone heard of the Essiac de-tox tea? It is Canada's remarkable unknown cancer remedy. I had a friend that used it. She had been diagnosed with cancer and a prognosis of 2 months. 8 years later she is still with us and cancer free. I agree that our LGL shouldn't be in the same class as leukaemia as it is so very different. I have joined a forum with the Australian Leukaemia foundation and no one has LGL!! (or they don't wish to share experiences with me) I had my niece's 2 year old party today. I found it hard watching all the little ones and their baby siblings around. Being on MTX, means no children. I have only one 11 year old daughter from a previous relationship. My husband and I have only been married 10 months and we have no children together. (not that he wants any due to his age, > 40), but I feel that the option for extending the family has been taken away from me. Has this been something that other's have thought about? Allergies that I have are purley hay fever. I am allergic to most animal fur, dust mite etc. No food substances. I take anti histamines daily for about 6 months of the year. (we are in rural Victoria, Australia, a farming community, so there are alot of different grass seeds in the air) I have thought so much about the medications I have been taken. I used to be on cipramil, which I have read is banned in America. Is that true? I have read that it can cause immune issues, and can also be the drug of choice for organ recipients to help suppress their immunity. I blamed this med for my headaches and fatigue for so long. I no longer take this med and have replaced it with cymbalta. How we question so much in our lives. No one can give us a reason why this has happened. What do we all have in common apart from our age? Is there another common denominator that we can identify as a possible contributor to our condition. I'm blood type o+, what is everyone else? Has anyone been exposed to anything? I spent three years in the uk and three months in Africa. Did I contract a virus that I didn't show symptoms for? Guess I am analysing too much.. Sorry. Sharon
sarasotap Message
28 Mar 2010, 04:48 PM

Sharon- Don't be sorry! These are all 'normal' questions that we end-up asking ourselves. I agree the no children part is hard but from my reading once you are off the methotraxate for a while you can try to have children. The only downside is when a baby is born we pass our immune system on to them-ours aren't that great to begin with. LGL is considered a leukemia because it is similar to other blood cancers like CLL. LGL has only been an official diagnosis since 1978 so it is still new to the medical community. If LGL goes untreated when it is acting up you can end-up with tumors which mimics most cancers. Mama C I have to say the night sweats are horrible! I get up a lot at night so my husband and I are now sleeping in two separate bedrooms because we were both getting up tired and I knew it was my fault he wasn't sleeping. Both of us being over tired led to a lot of tension. Now he is much better and nicer, and most of all more supportive because he isn't so tired. Its great your daughter is trying her hardest-I too have my good and bad days and I have also learned to take one day at a time! I am working on my masters-taking classes online-school work can be a big task. Your daughters attitude is awesome. enough babbling for now! sarasotap
MamaC Message
29 Mar 2010, 06:27 AM

Sharon My daughter and I were very concerned about her having children and we discussed it with Dr. Louvhran and we decided to have her eggs retrieved and frozen before she had to start methotrexate or other meds. She had it done last Feb, She had a real hard time giving herself shots in the stomach every day and blood work every other day but shes a trooper and did just fine.they got 19 eggs so at least if she does need to go on meds she might be able to have a surrogate, we were also told you could go off the meds for a year whle you concieved and were pregnant then start up again. The doctor didnt say that the child would inherit the altered immune or bone marrrow defect. I was wondering, talking about trying to find a common link, my daughter had a bad case of viral pneumonia when she was 14 and she also had a case of warts on and behind her knees which are a viral disease, anyone else have these? I'm not sure what her blood type is, they never typed her after the hundreds of times shes had blood taken, go figure!! Keep in touch, this really helps me, I didnt tell my daughter about this site because she is trying so hard to fuction as a typical college student and anytimeI bring up LGL or any related issue she gets down in the dumps, she relys on me to let her know what her levels are as I have all her blood work faxed to me everytime she goes. I have a chart with every draws results on them so if we need to go to a new doctor or even back to dr louchran its very easy to read, I actually give one to her doctors every 6 months so they can see her actual increase or decrease and dont have to ruffle through tons of papers. Thanks everyone for being so supportive Mama C
sarasotap Message
29 Mar 2010, 08:20 PM

Mama C-that is awesome that you are able to be a bit of a buffer for your daughter, especially where she is in college and has a lot of stuff on her plate too. I didn't have my eggs frozen before staring methotraxate and I am a little worried now-that was never brought up. Who suggested freezing eggs? Is it a painful process? Was it covered by insurance? I hope you don't mind me asking questions, I am just trying to gather as much information as possible! Thanks, Sarasotap
nlbl Message
30 Mar 2010, 12:11 AM

I noticed that many of you (or your loved ones) have begun treatment. I wondered if you had any enlarged organs? My husband's spleen has been slightly enlarged for several years now (increased 4cm recently), but his latest CT shows it has shrunk 2cm-anyone else have experience with this? Thanks nlbl
sarasotap Message
30 Mar 2010, 12:19 AM

Nlbl- My spleen has been enlarged-just watching it-very common with LGL patients-could we be so lucky! (I am being sarcastic of course)They are watching mine because I guess if it becomes too much of an issue they remove them. sarasotap
ddixon Message
30 Mar 2010, 12:39 AM

with my husband, initial test results (done when they were diagnosing Rheumatoid Arthritis, and before he started any treatment) showed that my husband's liver was not functioning properly, an ultrasound of the liver showed that the liver was of normal(ish) size, but the spleen was somewhat enlarged. The Splenomegaly, along with the RA and low WBC earned him the added diagnosis of Felty's Syndrome. *roll eyes* They are monitoring his liver function because they RA drugs can actually make it worse. I think I've heard that an enlarged spleen is more common in LGL leukemia, but everything I read kind of runs together after a while, if you know what I mean :) btw, Mama C, I totally get and respect that you are here on behalf of your daughter (I accidentally said "doctor" before)! I am here on behalf of my husband for a few reasons - mostly that I am the more medical-information-inclined of the two of us, but also that he doesn't want to fill his head with information so that he starts imagining symptoms he doesn't have because he's read about them. Does that make sense? There's also a little bit of anonymity because we don't want anyone in my husband's industry (who's not also a friend) to know about his diagnoses and have the opportunity to discriminate against him. So far, I'm really happy with having 7 members and the amount of information and support we've already been able to provide each other in a single week! :) I might try and separate out a few topics like introductions, symptoms, and treatment experience so that this thread isn't so unwieldy for new members :)
nlbl Message
30 Mar 2010, 01:09 AM

Sorry, another curiosity- I'd love it if people could share their doctor's outlook on their condition. After our initial visit with the local oncologist, we were left devastated despite my husband's young age, relative health, borderline counts, and no need for treatment just yet. I'd love to hear about some other experiences to help improve our outlook & hope for the future. Thanks, nlbl
ddixon Message
30 Mar 2010, 01:21 AM

our oncologist gave us the diagnosis by phone (we already knew the name of what they were looking for when they did the bone marrow biopsy) - that was really unsatisfying because he just relied on us to look everything up ourselves. He just said "see ya in 6 months" ?!? No sit-down-and-talk explaining the disease, prognosis, treatment options, and what to expect in general. But the more we find out about it, the more we understand why he took that attitude. We made sure his rheumatologist had the information he needed to assure my husband is being treated appropriately with this new diagnosis. Once I realized the rheumatologist is monitoring his blood levels carefully every month or so (because of the methotrexate) I felt a lot better. I still worry a bit about a minor cold becoming a big deal, but unless his neutrophils plummet very quickly between CBC tests, we should have an early warning. Honestly, I think the rheumatoid arthritis diagnosis 4 months prior (in an otherwise healthy 34 year old) was a much bigger shock, but I totally hear you - there's nothing like the word "cancer" to scare the you-know-what out of you! -Deirdre
MamaC Message
31 Mar 2010, 01:11 AM

sarasotap you should see if its not to late to rerieve your eggs, you might be able to go off the mtx for a while so they can do the proceeedure, I would definately ask your Dr. The egg retrieval and storage was actually my idea. None of my daughters doctors even suggested anything about it and I had to do the research myself about the whole process. My insurance didnt cover it because my daughter didnt "fit" in the right catagory for age even thought the fertility Dr wrote a long letter explaining her leukemia and the possibility of the meds making her infertile. They were very cold and cruel. We were able to get most of the injectables free through the drug companys that make them over 10.000 dollars worth of meds!! They also would not pay for the storage of the eggs because they would not pay for the proceedure, the storage is 1000 dol a year which we will gladly pay. If she was 21 then they would have paid for everything!! The proceedure is done right in the office with an anesthesiologist and the fertility doctor It only takes about 15 min. The recovery depends on the person, Unfortunatly, my daughter, because she had so many eggs ,is young and is very thin, had the worst recovery that you could have. for 2 weeks she looked like she was pregnant and was in a lot of pain. But being the trooper she is, she never complained and I stayed at college with her the 1st week and literally drove her right to the doors of all her classes as it hurt her to even walk. After the 2 weeks she eventually was back to "normal" and continued her daily routine of working out w cardio and weights in the morning before classes.If you need anymore info on the egg retrieval let me know. Mama C Deirdre even though my daughter is getting a doctorate degree in the healthcare field, I dont think this site would be benificial for her. I also dont want her to read about side effects of meds that she might have to go on, she is anxious enough as it is and has trouble sleeping because of her mind racing a mile a minute. She's even had a few panic attracks and gets down every so often. I am the reasearch fanatic, and was, unfortunately, the one who told her 1st doctor that he was running the wrong tests and what tests to run to get her diagnosis. After he listened to me, and got the results, he pleasently told us to go elsewhere for treatment, which , thank God we did. I just got her blood work back and even though her HGB/HCT are low 9.4/27.6 her neutrophills were 1200!!! and her lymphocytes down to 66!! Im not going to call Dr,Loughran until next month just in case this is a fluke, but I hope they stay like they are MamaC
ddixon Message
31 Mar 2010, 01:20 AM

MamaC, your response puzzled me slightly, then I realized I wrote that you were here on behalf of your "doctor" instead of your "daughter" LOL :)
nlbl Message
9 Apr 2010, 08:49 PM

Just got back from Penn State with Dr Loughran & can only say, "what a difference a doctor makes!" For those of you who aren't aware...Dr Loughran is the nation's expert on LGL and we had an amazing visit with him. They have a lab there & keep the LGL registry so you'll be glad to know there are folks hard at work trying to "cure" this disease. He is did some additional tests to confirm my husband's diagnosis & he alleviated the fears we had re the prognosis. Just wanted to share some good news.
MamaC Message
11 Apr 2010, 02:16 AM

nlbl Is your husband on any meds yet? DR Loughran is amazing, his whole office is and clinical coordinator Kendall is right on top of things. Did he say when he wanted to see you back? Sorry about all the questions but my daughter saw in in dec of 2008 and we are on a wait and see schedule now. We send him her labs every month and so far (thank God) she isnt on any meds, she has anemia and low neutrophils. But not low enougn for a transfusion.Just wondering if he said anything abut the research hes doing and if there were any new leads or findings. He only sees patients one day a week and does research all the rest of the time. Also welcome to our new member in CA forgot your screen name, Im glad our small community is growing, strength in numbers!!
smd71 Message
11 Apr 2010, 02:56 AM

nlbl, So please you have managed to see a doctor that knows what they are talking about. Do you feel comfortable in sharing some of your visit with us? I am very keen to know what he explained to you, and if he could shed any light on our issues Sharon
nlbl Message
12 Apr 2010, 12:39 AM

Mama C- my husband is in a similar situation as your daughter-his nphils are in the low-normal range so he is not on any meds yet. Dr L described the course of meds (I'll post it in the treatment section for others reference). My husband is not anemic but has an enlarged spleen. We are awaiting confirmation of the LGL diagnosis and if it is confirmed then we will "wait and see" & send blood work every 4 months for the first year, see Dr L in a year & then send blood work every 6 months. I wonder why your daughter send it every month? Does your she see a local oncologist as well? Unfortunately we did not have the foresight to ask about any new findings. I will post the info re the LGL registry on the treatment discussion thread so more folks can participate & aid the research. We were however, so encouraged by the confidence of Dr L that LGL (in my husbands case & I'm guessing others if not everyone) should not affect life expectancy & the treatment has a 75 % success rate. Sharon-in addition to the above, we asked Dr L about vaccinations & (in my husband's case atleast) he said to simply follow normal advise re this (i.e. flu vaccine if you are older etc.) We asked him about nutrition & he advised of regular nutrition & exercise. We asked him about the use of turmeric supplements (curcumin) & while he did not clearly oppose it, he said there was no evidence that it helped. He confirmed that LGL does not appear to be a genetic trait (i.e. passed on to children)-there are only 2 families which have more than one person with LGL. Let me know if there are any specific questions you have & I will try & remember if he answered them. Check out my post on treatment for some info too. Hope that helps!
smd71 Message
12 Apr 2010, 06:27 AM

nlbl, You are a legend!! Your questions that you asked are fantastic and you recieved really positive responses. This is great. I find it intersting that you all send your bloods in 4 monthly, monthly etc,. I have mine done weekly!! Today was the day. This is to continue for at least a few more weeks until I see the specialist again later this month. Very interesting though. Thankyou for sharing so much!! Sharon
MamaC Message
14 Apr 2010, 03:26 AM

nlbl So glad your visit went well. My daughter does see a oncologist/hematologist in the city that she attends college at. He also gets her blood work every month as well as her GP back home. I think she gets them done every 4 or 5 weeks because at one point last year her hgb was dangerously low enough to get a transfusion. and her neutriphils fluctuate so much.
nlbl Message
14 Apr 2010, 12:23 PM

TRANSFUSIONS? I was wondering if anyone could tell me about why one would need a transfusion? None of our doctors has ever mentioned this...thanks, nlbl
MamaC Message
15 Apr 2010, 10:31 PM

nlbl My daughters HGB/HCT were 8.0/23.2 and she was so exhausted she was unable to stay awake on her college classes. The Dr wanted to give her a transfusion so her levels though temporary would increase and she wouldny\t feel so tired. we never did get the transfusion as her levels did go up to where she could function. They range now from 9.2 to 10.0 for HGB which is still low, but she is able to function with napping daily. Are your RBC levels in a normal range , all of her RBc values are out of wack. MCV,RDW HGB/HCT, RBC are all too high or too low!! Hope this helped MAMA C
smd71 Message
17 Apr 2010, 08:54 AM

nlbl, I too have been offered a transfusion, but only as a temporary fix. It is a type of bandaid effect in order to increase your haemaglobin to a normal level. You are then able to have perhaps a better quality of life. The down side is that it only lasts 2-3 weeks and then you are back to square one. This is because all the blood cells that aren't yours die off relatively quickly, leaving you with your own "malformed, non effective," blood cells. Sometimes people require a blood transfusion because their hb is so low it is actually dangerous. That is it can cause a heart attack. We are talking about an hb of 5 or lower. My gp would like to give me a transfusion if my hb reaches 7. Fortunately I haven't been any lower than 8.5 and currently I am sitting at 9. (Which is great for me) However, I don't feel any different. Hope this has helped you. Sharon
nlbl Message
17 Apr 2010, 12:56 PM

Thanks for the info above, I appreciate it. nlbl
nlbl Message
22 Apr 2010, 01:24 AM

Has anyone had a positive T-cell (TCR rearrangement ) test & then a negative one?
smd71 Message
23 Apr 2010, 07:41 AM

Sorry, No I don't think so. I only had one genetic rearrangement test and I haven't seen the results, so not sure how to interpret it. So no contradictory ones. Good luck Sharon
phalehan Message
5 Aug 2010, 03:29 PM

I kept getting those mortgage life insurance offers so I finally filled one out to see what would happen. When that sales person called me on of the questions he asked was do you, or have you ever had cancer. He told me he did not know if any company that would insure someone with Leukemia.
nlbl Message
19 Sep 2010, 12:42 PM

Just wanted to share an update: my husband (33 years old, diagnosed in Feb '10) had blood work done again & his numbers are "normal." As some of you may know - he tested positive in the TCell test (?) in Feb & then negative in April & Dr Loughran was unsure if he actually had LGL. These recent blood tests indicate that he may not actually have LGL, but his levels may have been off due to fighting a virus at the time. Ofcourse we are super hopeful that this is indeed the case, but I am curious whether this has happened to anyone else since many of you have endured some time & uncertainty before you were correctly diagnosed & needed treatments for symptoms. I'd appreciate your thoughts. nlbl
stonesc Message
19 Sep 2010, 04:07 PM

LGL is a very strange illness. There are several different forms, some more aggressive. Most are T-LGL which can be mild/indolent other than side effects and there can be a lymphocytosis type which is in an entirely different category. I had my dx in my 30s and am now 48yo. My case has been more aggressive this last year and about 5 years ago. (nice break in between) I have been on methotrexate which did not do a thing but I agree with the nausea and hair loss that others noticed Then cyclosporin-nausea and no effect, cytoxan no effect but early menopause became infertile in 30s. My major manifestations were severe neutropenia and anemia for most of the duration of the illness. We used campath which is rough the first 5 days of iv and I had a good result from this but required a second course (as subcutaneous shots - 1st was iv and that was much easier) The drug is no b.s. - it is a MAJOR depressent of bone marrow so you are on lots of protective meds and closely monitored. After a 5 year hiatus this past april my anemia kicked into HIGH gear and since then I have been dependent on transfusions. ONce the hgb is under 8 it is not really safe to allow your body to be deprived of oxygen. We tried another cycle of campath iv and half way through the 14 weeks I developed a major rash and they had to stop it. WE then tried rituxan for the anemia. The anemia from LGL is multifactorial but one part is the lgl causes your cells to attack red cells. Still no respone. My case will be up at tumor board at City of Hope OCT 1 to be considered for bone marrow transplant. My symptoms are fatigue, large spleen and I read someone mention re:getting viral stuff and feeling worse and that is correct because our bone marrow does not hold up well. Hope this helps re: taking spleen out - for some pt with LGL it is okay but does not treat LGL only anemia and there are some cases pts become worse.
tezbomb Message
24 Sep 2010, 05:38 AM

Hi, My husband just received the diagnosis of lgl this week. After 6 months of bone marrow biopsies, countless blood tests and scans, what originally was diagnosed as idiopathic neutropenia will now be treated as lgl based on a test showing trace colonies of T cells. He is only 28 and his symptoms have been limited to severe neutropenia and a slightly enlarged spleen. He has been taking Neupogen since July, which has leveled out his blood work. He has no prior history of infection and only went to the doctor after years of dealing with mouth ulcers. He feels "normal" 95% of the time and is just more fatigued than normal the other 5 %. We are meeting with his doctor next week, but have been told that he will advised to start methatextrate. I have found this site the most helpful in terms of providing the most information without all the doctor jargon! However, I feel some of you are going through major challenges as a result of the lgl. It scares me that the night sweats,blood transfusions,rheumatoid arthritis, etc. could all await. Are all of these symptoms to be expected? Also when telling friends and family about lgl, the word leukemia seems to illicit a major sense of fear. Can anyone tell me why it is classified as a leukemia and why neither of my husband's doctors refer to it as leukemia but as a disorder? Thanks for listening!
Boxall5 Message
24 Sep 2010, 01:12 PM

Welcome tezbomb! Yes, it's tough first hearing the diagnosis (3 months ago for my 24 year old son). For 3 months at the outset, we also were told that this was a very rare blood disorder. Somehow, it didn't seem so serious when called that. But, in actual fact, with the T-LGL diagnosis and my own internet research, I've found it better to actually face up to the illness as a chronic leukemia. I think this has helped my son as well, and it's made it easier to explain it to other people, particularly as my son also doesn't really seem so unwell. The L word is scary, but other leukemias seem far worse to get than T-LGL. I think people with T-LGL here in RareShare have their own individual symptoms although there are quite a few commonalities. There seem to be several treatment options and take comfort from the fact that there is new research happening all the time. I hope you find this group of real support, as I have myself. Take care - Karen
ddixon Message
24 Sep 2010, 03:30 PM

hi TezBomb! I'm so glad that when you got your husband's diagnosis, you were able to find us right away and that we were such a great source of down-to-earth information for you :) Crazy to think my husband was diagnosed with LGL leukemia only 7 months ago, prompting me to create this community, I'm so proud of how much it has grown :) We also found that people freak out when you say Leukemia, though we try to explain immediately that it's not like the leukemia they're thinking. As I understand it, a leukemia is when your white blood cells start multiplying out of control, making your blood counts all out of whack, and then chemotherapy is needed to knock them down to nothing, which makes you very vulnerable to infection. I didn't know there were different kinds of white blood cells, so "ours" is a leukemia because it deals with the proliferation of Large Granular Lymphocytes, a type of white blood cells that either doesn't occur naturally or only occurs in really small quantities. What makes it unlike the leukemia most people know is that it is chronic (sit and wait) rather than acute (requiring immediate and drastic treatment) and that the biggest risk is actually the neutrophils dropping so low that you are at risk of infection. I'm not a doctor, so this is just my "layperson" way of explaining it to friends and family, but I hope it's fairly correct :) For a while I would start the conversation calling it a blood disorder because that label doesn't carry as many associations in most people's minds. As for the experiences of the people on here, it's very helpful to have someone to compare notes with, and there's some common symptoms, but LGL leukemia can be a lot of different things. It isn't the kind of disease where everybody gets the same symptoms eventually during the course of the disease. I think many people feel quite well for long periods of time when the disease is inactive, but unfortunately others here have more serious symptoms that really interfere with quality of life. Some don't require treatment, some are getting treatment which is working, and some are getting treatment but haven't found relief yet. I hope your husband continues to feel well! -Deirdre
SunEnvy Message
29 Sep 2010, 12:11 PM

NLBL......... i think i am dealing with the same issue, gene rearrangement test came back positive for t cell clone and my blood work points in that direction, the Dr at the Mayo Clinic said i may have had LGL at one time but he does not think so at this point because of my white blood cell is within normal range at the moment. it gets frustrating i am finding out.
susi235 Message
29 Sep 2010, 02:42 PM

In response to describing this disease, I have found a comment that my doctor made to a nurse to be very helpful. The nurse was a friend who was in the clinic the day I went in for my second opinion 5 years ago. She asked how serious my diagnosis really was, and he responded by comparing all the many types of leukemia on a scale of 1-10 (1 is milder and 10 being severe), T-LGL was about a 2. He went on to say that it used to be a 1, except now there are effective treatments for other indolent leukemia diseases, for example Hairy Cell leukemia. While this may not be a solid scientific statement, it has been very useful for me to use to calm people down when I say that I have "a little leukemia."
stonesc Message
30 Sep 2010, 02:10 AM

not all forms of lgl are "2" i have advanced lgl and am waiting for bone marrow transplant these are all different so you need to respect the fact that this can be a serious illness-live life but always be mindful it CAN become more aggressive.
MamaC Message
5 Oct 2010, 03:17 AM

Hi Boxall5 I havent posted in a while but when I saw your post It looks like your son (24) and my daughter (20) are the youngest on this site to have this disease. My daughter was diagnosed almost 2 yrs ago by a hemotolgist/onc we found near her college. he then refered us to Dr Loughran in hershey for verification, which unfortunately he confirmed. We had gotton the run around for 6 months with another hemotologist, It looks like she has had this since she was at least16, just over looked. She is not on any meds yet as her neutraphils are steady between 800 and 1000 and her hgb runs between 9.4 and 10.1 still low but livable. When she got diagnosed her neut were 300 and hgb 8.4.She exercises everyday and says it helps her get energy. She has changed her diet and eats very healthy now and takes some beri and acai supplements. She is in her 4th yr of college (its a 6yr doctorate program) so far, so good.Glad you found this site!! MaMaC
Boxall5 Message
5 Oct 2010, 10:42 AM

Hi MamaC As parents, it's a shock that our kids have this illness but your daughter, like my son, is getting on with life - which is great! My son doesn't read this site that I know of, but I've shared a few things with him and he's OK with me writing about him... Smiitner is 23 (so younger than my son), and so far 5 are in their 20's here on RareShare. I think my son has had T-LGL for quite a while and was really low to begin with, resulting in chemo straightaway after diagnosis. Amazingly, he seemed to easily tolerate the anemia and worked full time right up to when he first went to hospital in March with very very low HB (43). After 3 months of chemo, he still loves his work and things seem to have stabilised a bit at a better level. Nice to say Hi! - Karen
Ducky Message
15 Oct 2010, 10:37 PM

Hello Stonec, I have advanced to your same state with Hbg averaging around 6.3 and completely dependent on blood transfusions. My understanding was that bone marrow transplants had been ineffective in treatment of LGL. Has there been a change in thought on this? Will you be receiving a bone marrow transplant? If not for the rash would Campath been a route to success? Sorry for all the questions, tired of being tired...
stonesc Message
16 Oct 2010, 01:49 AM

Ducky Waiting for potential transplant New thinking is that this may be an option for advanced disease I do not have the arthritis like the others Other strategies for treating the anemia are drugs that take away the antibodies that attack the red cells Campath works and after the first couple of doses is pretty well tolerated. I had many cycles-one of which kept me chemo free for 5-6 years! So if you have not had it you may want to try it. This is not a disease for your oncologist in the community-go to an academic center with a specialized heme-onc team I don't know where you live but can recommend some. I am in Los Angeles and going to City of Hope. UCLA had nothing, USC nothing much going on, Cedars the same Hemoglobin this week 5.5.- two steps up 3 back!!!
Ducky Message
16 Oct 2010, 01:52 PM

I did go to see a specialist at the University of Florida in Gainesville by the name of Dr. Dang. He is Harvard educated and supposedly a leader in the field. He didn't really even examine me, used a car repair analogy and proclaimed "Pentostatin" would have a 70% chance of putting me back in a remissive state. So did the pentostatin for three months - counts all normalized with the exception of the RBCs. I very much appreciate the information on Campath, I see my doc on Monday. He is the best in our area, he even knew what LGL was when I met him first three years ago. I don't have the arthritis either, just generalized joint stiffness with inactivity. Have you encountered any iron overload issues with the blood transfusions? My lowest Hgb was 5.0 so far, and I have had 38 transfusions this year. I will let you know my progress, please keep us posted on yours. We are all guinea pigs in this!
stonesc Message
16 Oct 2010, 03:38 PM

I definitely have iron overload and there is a new drug that clears the iron but is ridiculously expensive and not carries fully by my PPO insurance. The iron overload keeps taking a back seat to the anemia! The low red cells are due to "hemolytic anemia" and mine has not responded to the different chemo agents. Will let you know as I am going on a new drug in one week
mamenherbe Message
30 Oct 2010, 08:14 AM

Hello everyone! I am 36 years old and have been diagnosed with LGL in 2002. I am a young mum (from belgium) of two little kids (5 and 2 years old). I would like to point out that there is also another LGL group on yahoo groups wich exists since several years. I posted on this yahoo group 4 years ago a message about "LGL and prenancy" which might be useful for some of you. I am prepared to share my experience of having kids and LGL. I know also that a short article in a scientifical journal have been published about this topic a year after I had my first child (in 2005). I will give you the reference as soon as I can for those interested. Kind regards!!! Candice
mamenherbe Message
30 Oct 2010, 08:20 AM

Here is the link to the reference of an article from the bristish journal about pregnancy and LGL: http://cat.inist.fr/?aModele=afficheN&cpsidt=16560262The effect of pregnancy on T-cell large granular lymphocyte (LGL) leukaemia has not been previously described. We retrospectively reviewed the clinical features of three patients with T-cell LGL leukaemia; each of them had one or more pregnancies during disease evolution. Pregnancy was associated with sustained improvement in neutrophil count and concurrent reduction in lymphocytosis. Neutropenia returned in the non-pregnant state in all cases. A similar effect, induced by exogenous progesterone in one patient, suggests a role for progesterone in overcoming mechanisms of neutropenia in this disease. Pregnancy thus appears to have a beneficial effect on neutrophil count in T-cell LGL leukaemia" kind regards, Candice
Joanne Message
30 Oct 2010, 09:24 PM

Hi tezbomb and others, Interesting to read about your husband. I too had lots of mouth ulcers, colds, infections and went to the doctor and was dignoised with LGL on Thursday 28th oct. I'm 39, I feel fine, very normal 95% of the time, just cope with the mouth ulcer pain and gum infections. I am going to the dentist to keep my gums in good order. My hemotologist has not perscribed anything for me. Your husband is taking Neupogen. My dr said have monthly blood tests for a bit then see her April 2011. I may raise this with her. I am embarking on a health regime spruce up! taking vitamins and taking stressfull things out of my life. I'm making sure I have recovery time after a period of intense work otherwise I get mentally exhausted and fatigued. I need to talk to my boss about managing my work load. I worry he will see me a failure...but I have to worry about myself aye. (aye is a New Zealand saying...like saying 'right') I am doing yoga to help with sore back and hips (recenlty developed). It's a good destresser too. Does anyone else find comfort in yoga? I would also be interested to know the blood type of people with LGL as I wonder if there is a predisposition to LGL? I am Blood Type A negative. I also wonder if there is a link between internalising stress and depression with LGL? I would welcome people's feed back. I've been reading a book called "Live Right for your Type" by Dr Peter J D 'Adamo. It's about living the right life style and diet for your blood type and weakness of blood types. It is very interesting. It is worrying reading what other people are going through as I wonder if that is my future. I'm in Auckand, New Zealand. I welcome comments on anything I've raised here. Cheers, jo the Kiwi from New Zealand, 39, no kids, 1 husband, 2 cats.
Joanne Message
1 Nov 2010, 06:08 AM

HI Boxall5... I see you're in NZ... Can you email me at joclare at hotmail dot com... Cheers
Boxall5 Message
3 Nov 2010, 07:52 AM

Hi Jo Great to know of another in NZ with LGL...I've emailed you and even am coming to Auckland in a couple of weeks. Perhaps we can meet up? Take care, Karen
MountainGirl Message
11 Nov 2010, 03:14 PM

Hello, I live in Seattle. I was dx a year ago with LGL at the same time with stage 1 breast cancer. At the first consultation with my oncologist for breast cancer, he noticed my neutrophils were 700, took a bone marrow sample, and the test confirmed LGL. Then tested for RA, negative. I was told LGL was more of an auto immune disorder discovered by MD researcher at the University of Washington here in Seattle. Symptoms: fatigue, bleeding gums jumped at me. Also over the years, my muscles hurt and just feel funny. I am extremely active, and related the fatigue, muscle weakness to getting older ( 53) and still trying to keep up with skiing, climbing while working. . Chemo (cytoxan and taxotere) wiped out my Ns & neulasta shots did not help. I ended up in the hospital with bacteria pneumonia for several weeks. While there, I had daily shots of neulasta and we played the N count game, I had been at zero-30 for so long, we stopped the chemo treatment and started MTX and prednisone. I took both for 3 months while I had radiation. I am happy my breast cancer trmt is behind me, but my Ns are vacillating: 2400, 1600, then 700 last week, now 1300. It is difficult to tell what is due to LGL, or side effects from Tamoxifen and cancer treatment. My oncologist wants to monitor at this point: he thinks the up and downs could be normal. Thanks for setting up this forum.
susi235 Message
12 Nov 2010, 03:36 PM

Thanks for sharing your interesting experience with this disease MountainGirl. I had been wondering how other types of chemo would influence LGL.
TJTeresa Message
13 Nov 2010, 06:06 AM

Mountian Girl, We sound alot alike except for the BC. You should chat with Sandy, on the other messageboard. large_granular_lymphocytic_leukemia@yahoo.com Sorry I haven't been able to reply to all the posts here, it is not as user friendly as the yahoo site. If you want, your post will be sent to everyones inbox and you can reply to all if you want to or just to the individual. We have been chatting about trying to arrange a get-to-gether, if anyone is interested or have any suggestions. Lots of good info on the yahoo site, coz has been around for a long time and has quite a few experianced LGLers. Glad to see everyone has places to talk and compare to others, it has been the most helpful to me since my DX 3 years ago. Well wishes to everyone!! TJTeresa
Jesus_Lives Message
25 Jan 2011, 08:29 AM

Hello, I live in Seattle as well (Mountain Girl) and I was diagnosed with LGL over a year and a half ago. I am currently being treated with methotrexate 6mg weekly and 5mg of prenisone everyday since last June. I was diagnosed with RA last June and that's when most of my pain started intensly. I am concerned about being on prenisone for such a long period of time and my doctor doesn't seem to know how else to treat me. Therefore, I am going to see a Dr. Carlin with Virginia Mason in hopes he has some answer for an alternative treament. I feel like I am slowing getting work at the speed of a turtle. I feel pain everyday. Sometimes in just my joints, sometimes just my back/neck muscles. I get headaches all the time, memory loss, extreme fatigue and constant pain. This disease is like dying a slow death and we need to find a workable treatment and a cure. More research needs to be done. How do we get the word out to the doctors and scientists...How and where do we start. I am willing to be the first in line to help find a cure or treatment that works for all of us. Sincerly frustrated in Seattle.
susi235 Message
29 Jan 2011, 08:49 PM

Hello Jesus Lives, I/we hear your frustration. I know that when RA is involved the disease is a "different beast" as my doctor says. It sounds like you need a fresh set of eyes to look at your case. I am a firm believer in research hospitals and clinics. They like to have challenging cases! My clinic even makes me feel special sometimes :-) The Lymphoma Research Foundation is the research group I've been involved with a little since my dx. I don't think they have anything going with LGL now, but they seem to have momentum in spreading the word about lymphomas/leukemias. Best wishes to you.
cgreene Message
17 Mar 2011, 09:31 AM

Hello everyone. I've just been diagnosed with LGL, I'm 35 and had a little boy 15 months ago. I ever seemed to get over the birth- feeling really tired all the time, aching all over and getting sick a lot. Luckily I now know what the problem is. I used to be really healthy and active and it is a bit of a shock to be hardly able to walk a couple of miles any more. I need to see another specialist before they decide on treatment though. I live near London and have been referred to someone at the Royal Marsden Hospital. I was wondering whether there is anyone else in the UK with this and where they have gone for treatment. Thank you
ddixon Message
26 Mar 2011, 04:58 AM

Hi CGreene, welcome to our group, sorry you have occasion to be here and that no-one has replied to your question yet. I don't believe we have anyone in the UK, but the resident expert on LGL leukemia is Dr. Loughran (see http://www.rareshare.org/communities/large-granular-lymphocytic-leukemia/topics/652) for details. He has been very quick and helpful responding to people by e-mail or phone, so you might try contacting his office and asking if he has any recommendations for specialists in the UK. I hope that you are able to find relief soon. My husband (also diagnosed at 35) was very disabled very quickly, but also got better fast. He now swims hard several mornings a week and feels pretty much like his old self except for the overstuffed medicine organizer. :) Deirdre
cgreene Message
26 Mar 2011, 01:30 PM

Dear Deirdre, Thanks for your reply- it's made me feel much better. I'll get hold of Dr Loughran. Can I ask what treatment your husband was put on? Catherine
MountainGirl Message
27 Mar 2011, 07:09 PM

Jesus Lives and TJTeresa, thanks for your note. I apologize for the delay in responding. but I had a relapse of my LGL over New Years and you know what that means! Jesus Lives, I already had an oncologist for my breast cancer, Dr. David Dong, MD with Puget Sound Cancer Center at Northwest Hospital. He noticed my neutrophil count was low and did a bone marrow biopsy right then and there in his office, and report came back LGLL. His partner at Puget Sound Cancer Center, Dr. Birchfield is the hematology oncologist. He has treated many patients with LGL and was very optimistic,but said many patients due stay on MTX I saw him over the holidays. TJTeresa, thanks for the reference re Sandy. I can't seem to navigate the Yahoo site, but will keep trying. I have had this for a long time, untreated. I know I must be patient. I really dislike the prednisone, so I am happy to taper off it and start Cytoxan. Another thought: this puts some of my symptoms over the years in perspective: Sever fatigue, I thought was depression, stress and getting older. I thought I must be getting too old to work full time and still try to ski, climb and cycle ( I am 54) Chronic sore throat, I thought was tonsillitis- Thrush, bleeding gums- I thought I was not flossing enough ( but I was) and blamed my Irish mother for her bad teeth.... Everything is in its place right now. Best regards, Elizabeth
TJTeresa Message
28 Mar 2011, 10:57 AM

Elizabeth, the yahoo site is having some maintinance problems, sorry to say. I will try to get Sandy to join this group so that you can chat. Welcome Catherine, I was dx over 3 years and have had some really bad times and some fairly good times. I know it is difficult at first, but with some lifestyle changes and some trial and error, you will be OK. I hope you will be able to find a helpful Doctor close to you and that they have had some experiance with LGLL. We all can be quite different and is hard to compare, but we still learn a lot from each other, so ask any questions or just vent if you need. Hope you begin to feel better soon. TJTeresa
Boxall5 Message
11 Apr 2011, 09:37 AM

Hi Catherine I haven't posted for a while, but I'd like to pass on that there is another Rareshare member in the UK: betsyotoole, whose husband has LGL. I hope you are doing better now and on the way to finding a specialist you're happy with. Like all of us you've probably scoured the internet for articles and found it all a bit overwhelming. There is an excellent one by researchers in France (April 2010) comparing and summarising other recent research-see in Disorder Resources (in the menu on the left). It's some sort of comfort to know more about LGL and great to read everyone's posts here... My son was diagnosed exactly a year ago and is doing OK for now on MTX and a tapering dose of Prednisone - next appt in about a week. Take care, Karen from New Zealand.
betsyotoole Message
13 Apr 2011, 07:13 PM

hello catherine i live in the uk in birmingham .my husband has lgl ans has been diagnosed for a while now he has had chemotherapy to help with his neutrophils and it appears to have helped at the moment he is currently under the care of guy pratt at heartland hospital.
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