I've been lurking for a few days and reading posts - and learning ALOT. Almost 2 years ago to the date my husband started having migraines - again. These seemed a little different than years prior and it was believed it could be scar tissue from a prior car accident/head trauma. He was given medication. (we didn't have insurance at the time, so no scans or tests). A few months later his anxiety was thru the roof and we put it off on stress. Which was reasonable at the time. He had also been losing weight, but was very active so it seemed like a reasonable side effect. 6 months after the headaches presented the nausea and vomiting started. Dr. noticed swollen lymph nodes in the groin on examination and my husband couldn't explain how long they had been there. Several rounds of antibiotics later they decided to remove and biopsy one. That was a little more than a year ago and started us on our crusade of negative or inconclusive test results (ct, pet, BMB, you name it...) They did conclusively rule out that this was a lingering result of any head trauma. He has been tested for EVERYTHING you can think of. SLE Lupus kept coming up as a possibility. The current hematologist said "no". But diagnosed him with ITP, with occasional neutropenia. He has had recurrent episodes of syncope that land him in the hospital where his CBC's get a little wacky - but never to the "aha!" stage. Spleen and bone pain are intermittently severe and sometimes you can visually see his spleen is enlarged, but by the time we get him to the dr/ER, it's gone down. He has a plethora of other symptoms, such as night sweats. His hematologist had just said that at the rate his B symptoms were progressing he should expect his blood work to show an acute stage of leukemia. Today we get a call that his last set of blood work did indeed show high LGL's. That was from the nurse and we are awaiting a new appt to see the dr. and possible 2nd BMB. His last CBC showed slightly low platelets and neutrophils and for the first time slightly high lymphocytes. But not extreme. I'm amazed at how similar some of the symptoms I've read on here are. Like his brain fog and loss of memory. He's never had a great memory and has always been a joke between us. But lately it's severe. His eye also wants to get "stuck", like a lazy eye. It doesn't last. Hands and feet have been numb for months. His PCP keeps checking him for signs of RA but he only seems to have the slight joint stiffness I've heard referred to on here. His hair has also thinned considerably. (he's only 40) He hasn't been allowed to drive for over a year because of the "unexplained" syncope episodes and constant dizzyness. He is not on medication, only occasionally for pain. And zofran for the nausea. So I'm probably making a huge leap here by assuming this is what he may have, but we have gone almost 2 years without clear cut answers and I'm just sick of it. In all the research I've been doing there appears to be two different types of LGL - one that can be aggressive. Before we sit down (again) with our hematologist (we are at Moffitts Cancer Center in Tampa) what should I be asking? I know they are specifically looking at his T cells. Unfortunately, the nurse called without me here and of course, he can't remember all the details of the conversation. =) Thank you in advance for your help. (there's alot more but I don't think there's enough MB space on this website!)

Hi ThnKnPos Welcome to RareShare. 2 years is too long without a diagnosis - that's really tough. Once you know what you're dealing with, a weight is lifted I think. I sympathise with you on phonecalls from medical professionals.... quite early on my son had a 5 minute phonecall from his haematologist and wrote down 3 words on a bit of paper! Of course, tho he's the patient, we all had lots of questions. By stirring a bit we managed to swing a face-to-face, extra consultation that helped. Since then, my son's been happy for one of us as his parents to go to each appointment. We write questions in advance (as a prompt if need be), and take notes during the consultation. We've found this works well for us so far. Hope you get some certainty soon. All the best. Karen from New Zealand

Moffit should be familiar with LGL, unlike most other local Doctors. From what I understand a bone marrow biopsy is the only way to confirm type of Leukemia. They may have figured you were "watch and wait" and did not want to DX until you got insurance or needed treatment. Whatever the case, you need to apply for SSDI as soon as possible and you would need a DX for that. If his ANC (Absolute Neutrophile count) gets below .6 or 600, he is at risk for life threatening infection and a forced visit to the hospital can break your bank. Moffits Dx should be accurate but don't be suprized if you need a second or third opinion. Sacred Heart of Destin FL did my first, M. D. Anderson TX second, NIH Bethesda third and Dr. Loungran Penn State forth. I cancled my fifth with Moffit, did not think it was nessicary and The LGL expert, Dr Loungran treats me long distance over the phone with my local Hematologists in Fort Walton. Dr. L used to be at Moffit and I get the feeling there may be some bad blood between them. Pardon my pun. I am sorry he is having such a hard time, it is hard to be in limbo like this, but if it is LGL you will find there is still a lot of not knowing, very very rare!!! However, it is managable, but still can be expensive. Feel free to e-mail me with questions if you want and make sure you get copies of all tests and blood results, you will need them in the future. Best Wishes

hi ThnKnPos (didn't see a first name :) sorry that you and your husband have been in limbo for so long - all those smaller symptoms sure add up to a lot :( I don't have time for a full reply right now, but wanted to say something about the "lazy eye" comment, which really startled me. My husband has been on Plaquenil for his RA and it has a side effect of hurting peripheral vision, so his rheumatologist was bugging him to see an opthalmologist. When he finally saw the eye doc, they actually found his peripheral vision was great, but one of his eyes went from being better than 20/20 to quite horrible. It resulted in the other eye doing all the work, so if left untreated the lazy eye would have gotten worse and worse. so now he wears glasses where one lens is very mild and the other is fairly strong, to make the eyes work together again. hope you can get a definitive diagnosis soon, and that your husband can get some relief from his "b symptoms". I hope that you don't have to worry a lot about the financial aspects of it, that you can get into a system if necessary. (we were very worried about that since my husband lost his job weeks after getting the diagnosis, but thankfully it's all worked out for now with COBRA and living in California offers some protections for future health insurance) -Deirdre

Thanks so much for all your help and understanding! We are okay on the financial end and do have some decent ins. coverage for now. He hasn't been able to work in over a year so the SSI app is in. Because he had his driving privileges taken away a year ago and has had so many symptoms/issues, we may be okay. At least it's a start. I know they customarily fight it regardless. But we have the ball rolling. Our hematologist at Moffitts has actually written research papers on LGL. So I do feel we're in good hands. (Altho I've read great things about Dr. L., so I'll keep that in my pocket!=) I am a very structured "let's have a plan of action" kind of person so this has been driving me crazy for some time. I've never been scared of a cancer diagnosis (okay, maybe a little) - it's been the not knowing and the seemingly wasted time. That has severely diminished his positive attitude and that's what worries me. So far his platelets and neutrophils are just moderately low. I know even for the ITP sometimes the recommended treatment is blood transfusions. Has anyone on here had any experience with non-blood alternatives when their counts drop?

I have found that those of us who find the messageboards are the types that are proactive in our health care. We are allways searching for more answers. Many I chat with on the Yahoo LGL messageboard, have been nurses. I live in Florida and was suprized when my SSDI was awarded in 6 months without a hearing, in Georgia it could have taken up to 4 years and a lawyer. Some I chat with are or have been dependent on transfusions or procrit for RBC. My platelets are sometimes low but so far have only needed neulasta for WBC. Very expensive and since on medicare now, have been denied. Cobra covered it because shot was given in doctors office. We all understand the frustration and feeling of helplessness with DX and LGL. Rare diseases are hard to DX and information is hard to find. I had LGL for atleast 30 years undiagnosed. None of us are exactly the same and treatments don't work the same for everyone. However once you know what you are dealing with it gets easier and you can start a good game plan. See if Moffit will consult with Dr. L if needed. I don't understand why they can't DX from the BMB. My first BMB was misdiagnosed by pathologist, but I trust that Moffit's pathologists are more familiar with such rare diseases. If they rule out LGL and still can't figure it out, I would suggest NIH, they have a program assisting DX for difficult cases. Keep us posted and hope you get some answers real soon.

Thanks for your suggestions! We have had some really good doctors but even still, they're imperfect. I think with leukemia especially you have to be on top of things because the research changes so often and so fast. We have 3 friends within a 20-30 mile radius that have been diagnosed with leukemia (CML) within the past 2 years. Just within a 10 mile radius: one with CML, one with non-hodgkins lymphoma, one with throat cancer, two with thyroid cancer, one with uterine cancer, one with testicular cancer, and I don't know how many with breast cancer. All within the past 2 years and all very close (locally). That is NOT including what could be going on with my husband. Anyone else think something's amiss here? These are actual people I know and are personally acquainted with. NOT people that I've just heard about living in my area, so I'm certain the numbers could be much higher. One question, TJTheresa, what does NIH stand for? Thanks!

National Institute of Health in Bethesda also is the National Institute of Cancer NIC. I believe it is government funded and they do much research. I went on my way to see Dr. L. I read an article receintly about their program to assit in DX of difficult cases. They compare the Doctor that runs the program to "Dr.House". Sounds like you have a cancer cluster and need to move right away. Have you checked out the Erin Brockovich web page? Lately it has come up in my conversation about the relationship between different types of cancer and exposure to agent orange and about the transferrance of the toxin to loved ones. Could that be an issue? Sometimes it just makes my head spin, trying to figure it all out. I take a break, do something fun and start all over again. Don't know what I would do without my laptop and the messageboards. Has kept me sain since my DX three years ago.

I was raised in Huntsville AL and my mom worked for a subcontractor of NASA. She died 10 years ago from bladder cancer. Of coarse we had an army base also. As far as the numb thing, I never know what to expect on any given day, wide range of problems some are dependant on medications or other health issues. Most have additional autoimmune diseases, 60% RA. For me, the LGL causes sweats, fatigue, weakness, dizziness. Also I believe, some pain and numbness due to swelling where white cells accumulate as they attack bacteria, viruses or fungus, this can come and go and move around the body. Then, infection can flair up anywhere from mouth to intestines, which ever location is weakest at the time. Don't recover easily from infections or injuries, but if I can keep my ANCs above .6 or 600 I am fairly safe. What gets really confusing is how different we can all be and the parameters of the disease are vast and can cross over to other types. Tell your hubby, I can sympathize with his struggle and good thing he has you to help. Cross my fingers for increased research on rare leukemias.

Thanks, TJ. My husband use to swear that everytime there was a launch that a "flu" would go around. I think he was on to something. That is EXACTLY what he says it feels like. Like the disease is "traveling". He has had symptoms of a UTI for weeks and did a month round of Cipro which did nothing. The initial urinalysis showed nothing until the nurse "let it sit" and then ran it again. Then it showed slight leukocytes. He's not running a fever. Well, he runs fevers off and on all the time. But not consistent with what you would expect with a major infection. But it is definitely a problem. So I guess we'll be back at the dr. tomorrow. The last couple of urinalysis showed nothing but yet the pain & symptoms persists. He has same symptoms as you also, sweats/nightsweats, extreme fatigue and dizzyness. The dizzyness seems to be getting worse. Has anyone on here participated in any clinical trials? (that you can talk about!)

NIH has trials but, not specifically for LGL, they add you on with other simular types of leukemia. They offered me a Phase II Intense Campath study 2 years ago, I felt that a phase II was too agressive at that time and was not satisfied with their inability to provide me with info, they just wanted me to go into it blindly. Since then I have chatted with a couple of patients who have tried Campath. I may soon be interested in a phase III or IV. NIH has a web site that lists clinical trials, when you get a definate DX, you will know what to look for. LGLL is very rare, Dr. L discovered it and holds a registry which has about 500 LGL patients from US and other parts of the world. Sorry to say I have not sent mine in to him yet. So far I know of 3 of us in Florida. In the last year it seems to have been a slight surge in DX. I think doctors are becomming more aware about it and are now making DX of younger patients. Also there are those who go undiagnosed for long periods of time and have just progressed to obvious levels. Even in a rough estimate you can see how few of us there are in the world. So not much research out there. Lately been having pressure and burning with my bladder. Feels kinda acidic. All tests and found nothing wrong. Headaches and earaches all week, who knows what next week. I have to be real careful because I have very little infection indicators. Can't go by the white cell count, my temp is 97 and then (too late) suddenly 104. When I was Dx my hematologists had me on Levaquin for a year. I keep antibiotics on hand and should take them even before I have my teeth cleaned. Sorry I have been so chatty, but hope it can be of some help to you, I know how overwhelming it can be at first and not knowing what to expect, can make it even harder. Ask anything anytime. Hope you can have a nice holidays.

Thanks, TJ! You sound so much like my husband! His temp stays around 97 (which is NOT normal for him. My normal temp has been 97.3 my entire life but not him). His temp has never gone to 104 but it does shoot up to 101 or 102 - for no obvious reason at times, too. I go tomorrow to get another round of antibiotics for him. I'm going to call Moffitt's myself tomorrow. My husband can't remember details of the last call and in my opinion they seem to be dragging their feet. Great hospital, great doctor. But they don't have to live like this. It may only seem like a few days to them but for us, it's a huge chunk of time relatively wasted. The other thing that's getting old is having to re-explain myself to every Tom Dick and Susan at the dr's office, etc. I called PCP to explain his UTI symptoms had progressed and did he want to see him or try a stronger med? After I played 20 questions the nurse asked why I wanted him on an antibiotic if the last one didn't work. I told her "that's what you're suppose to be telling me. That's why I called." I'm starting to think maybe I should switch careers and go into medicine. LOL How often do you get your blood work done? Right now they have my husband getting CBC's every 4-6 weeks and big stuff every 6 months. Also curious, did the SSDI require your second and third opinions? Who referred you to MD Anderson? Just curious. I've heard great things about MD. We've also checked into Sloan in NY. But we got into Moffitts quicker. Sorry for all the questions. I can't sleep! Hope you had a great weekend!

My local oncologist called MDA, as a consult about the pathologist's rare dx of T- Cell CLL. They suggested the possibility of LGL and my oncologist encouraged me to get a second, I chose MDA because of location and they had a good rep for T-CLL. For two months, I was told I had a max of 14 months to live. Three weeks later they changed dx to LGL. Followed, 1 year treatment for LGL suggested by MDA with Cyclorsporine. I was researching all I could and was not getting better. I found out about Dr. L and NIH and decided that I needed to know for sure what I was up against. Made an appt. with Dr. L and to make the most of the trip, took the opportunity to check out NIH on the way. I had arranged an appt. at Moffit for a month later. I guess I had decided a poll was in order. LOL I wanted to make sure I was'nt wasting my time and effort. It is difficult for me feel comfortable about my care when it concerns something so rare and mysterious. Come to find out my markers are still unusual, even for LGL and after a 14 month treatment with Methotrexate by Dr.L am only slightly better for now. Not looking forward to next treatment decisions. I go to local oncologist average once a month. CBCs and whatever needed. Handling all the Doctors is hard, especially the new ones. I am not their usual patient and often have to school them about LGL. I know they hate to see me comming, coz they work hard for the money they make off of me. What is most unsettleing to me is that they all just want to give you a pill or a bandage for their part of the body and are unable to look at the big picture for answers to the problem. You got to be diligent, ask questions and tell them what you want. Best of luck!!

I am finding that to be soo true! I had to battle with them in the hospital over scans and meds. It's the mental battle that's so exhausting - and I'm not the one with the medical problem! Do you have family to travel with and support you? I wonder what would happen with my husband if I wasn't here documenting everything and checking and rechecking advice, etc. Thanks again for your help and information! When is your next appt? Were you the one that mentioned possible bad blood between Moffitts and Dr. L? I found a very extensive research paper registered by Moffitts and written by Dr. L about LGL. It was very informative. It's a shame he's not still down here!

My sister rode up to PA with me but she lives in Atlanta. Am mostly by myself in this, but I have some family experiance with cancer and I can be quite anal about things like this. Can be difficult, especially when I don't feel well. It would be great if Dr. L was still at Moffitt, but lucky he is at least in the USA! On the other message board, several were nurses and have the same dilligence as I do about LGL. They have been the most help to me. Bloodwork next week and hope I can stay treatment free for a little longer, so far so good. Lots of ups and downs, but the more I learn the better I feel about the DX, could have been a lot worse. Still have a lot of good days in my future. Keep me updated on your husband's results, best of luck!!

Hey TJ! Just checking in. Been too busy to post. My husband is still on the threshold of diagnosis but I think we are almost there. His bloodwork is progressively getting worse. Then the big question of where to go next. I really don't like the treatment options. MTX just sounds bad - too many side effects and potential problems. Geesh. It's like if the cancer doesn't kill you the treatment surely will. Unfortunately, there's way too much info on the internet! And fortunately, there's way too much info on the internet! Haha. We're due back at Moffitts for followup with more labs so I'll probably be posting on here more regularly with more questions. Thanks again for all your help!

Glad to hear your husband's Dx is finally moving along. I know the treatments can seem scary and sometimes it may not seem worth it, but at some level it can be dangerous not to try something. Have tried both Cyclosporine and Methotrexate. Neither have helped me much. MTX is like chemo light and is used for RA also. Works well for some and others not. Unfortunately, there is no real standard to go by. I did not know but, it is a metabolism suppressor. With my Hypothyriod, I gained a lot of weight. There is a lot of supplements that others have taken along with, to ease side effects. ie: Folic acid, B-12, Vit D. I may have handled it better if I had known that. However, it still was not that bad for me personally. Too bad it did not work. Depending on his particular bloodwork issues, there may be other options, for now. The treatment that seems to have the best % of good results is Cytoxan and my next option. I am avoiding as long as possible and luckily my counts are closer to normal than they have been since dx. Don't know why that is but, I am glad to have a break from treatment for now. I try to avoid any extra meds if possible, because their side effects complicate and confuse me about what causes what. When you can, let me know the specifics about his bloodwork, such as, ANC Absolute neutrophile count. Give him my best wishes and try not to worry too much!!! Will chat again soon

*I was diagnosed nearly 6 yrs ago with previous blood tests showing I have had this since at least 1987. I was diagnosed at an annual physical with 3 % neutrophils, then bmb. I first was treated basically with Loughran's Prednisone and Methotrexate. I also joined his study. I did this treatment for 7 months with lots and lots of side affects from the pred. I finally refused to take anything and took the watch & wait approach. My neutrophils slowly decreased from around 1000 to even zero at one point. My quality of life was sooo much better off the pred but I had to do something. I found the zero neutraphils at a regular appt and was sent to infusion, given masks and neupogen. First, I took the neupogen once a week with no improvement. I finally was injecting it everyday at home with no improvement and scheduled to go on Cytoxan and prednisone. When I arrived at that appt my neutrophils were 3500 (must have been some kind of divine intervention). I was so distressed to have to go back on pred let alone cytoxan. I now inject neupogen at home and my quality of life is normal but for sometimes some fatigue which is much better than before. Everything is normal except platelets which were low normal when diagnosed and have steadily declined to between 70 and 90. I consider the platelet problem my biggest obstacle. I have never tried to cure this lgl but manage it for a good quality of life (although I couldn't eat salad for 4 yrs because my neutrophils were under 500 ) I know for sure that I have had this over 20 years and it seems alot of autoimmune problem to me. Side affects of meds are so awful for me that I prefer to just treat symptoms I have to treat. This works for me - hope this helps someone else.

Sking, I am very much like yourself, except I was not perscribed the prednisone and don't get the same benefits from neupogen. I prefer to manage without meds if possible and keep antibiotics on hand if needed. Was never told not to eat salad, that could explain the intestinal problem, which had to be treated with antibiotics. Thanks for posting and hope you continue to stay well

*My oncologist never allowed me to eat raw foods if my anc was 500 or below. Most of my problems have been skin infections and sinus infections. It took about 3 mos with me going to the highest 460 dose of neupogen daily before I got any result at all. Since that time I have slowly reduced my dose (because I don't like taking any more meds than I have to). I am now taking 300 neupogen 3 x week for two weeks and holding steady. I haven't had fevers in long time and I control mouth sores with closys which worked even when I had zero % neutrophyls. I'm lucky to have found an oncologist willing to work with me. I feel it should be a partnership decision. I would, of course , yield to his decision for good reason. It is totally about quality of life for me. Never thought I could give myself an injection but I do it. Be very careful about antibiotics as I had c-diff after augumentan for a sinus infection. Luckily I was reading a book about leukemia side affects and realized I had this pain on my lower right side, called my dr and he ordered lab test immediately which was really high as I had had symptoms for a while. This is a serious intestinal infection which must be treated with the right meds quickly. I thank my dr for listening to me right away. I always ask myself what I would have been like growing older without this - low energy-shortness of breath when exercise, thinning hair etc but I came from zero neutrophils okay, have three new grandchildren in the last six yrs. There are so many people with worse conditions, I feel lucky. I just go day to day, stay away from sick people, wash hands alot, take vitamins. Looking into curcumin right now-was tested at md anderson for cancer, especially pancreatic. Maybe something to help lgl.

I feel lucky also. It amazes me how simular yet different we all are. Right now, for no reason, my ANC is at 1000. That is the highest it has been since my dx 3 years ago. Still I have the same issues with earaches, mouth sores, hip pain and shoulder pain, ect. Never know what tomorrow may bring, as it seems to constantly run around my body. Generally better when my neuts are up. Levaquin saved my life in the beginning, but caused much pain and have not found a treatment yet that has done much good. Neulasta helps some for about two weeks of the month and can use if ANC gets real low, but medicare won't cover it. Greatful for the break from meds for now and not looking forward to the next step, Cytoxan. Usually feel better in the spring and hope that will be the case again this year. Thanks for chatting and will talk again soon.

Hi everyone and the newbees Havent posted for a long time! Probably because my daughter went back to school in aug. She came home from college for the holidays and just had her blood work done last week ( last draw was in early nov) This was the best blood work in 2+1/2 years. She just turned 21 over thanksgiving break and is still at the wait and watch phase. Her neut were 1100 and hgb/hct was 10.5/32.7 and her lymphocytes dropped from 79 to 59!!! She still feels tired all the time but has not gotten any infections since oct. She also has a supply of antibiotics that her PCP gave her to have just in case she feels like shes coming down with something. Zithromax z-pak seems to work great on her. Are any of you still at this no med phase and if so how long have you been? We only saw Dr L once 2 years ago but we send her blood work every 2 months. He is still monitoring and we will visit this summer. Take care Mama C

I have just recently found this site and am so happy to have contact with all of you. After reading many posts, I believe most members have T-cell LGL. I was diagnosed with aggressive Natural Killer cell LGL in 2003. After surviving the illness for 3 months, "aggressive" was removed from my diagnosis, and I was determined to have an indolent form of the disease. I was diagnosed in my hometown, Knoxville TN, following a 6-week period of 101 degree temperature, edema,and fatigue Dr. Wierda at MD Anderson in Houston, TX confirmed the diagnosis. He put me in touch with Dr. Loughran. I have not met with Dr. Loughran, but do send blood samples to him every six months for research. There was very little info available about the illness in 2003; and, still not much research or information is devoted to LGL. And within the LGL classification, I rarely read anything about NK cell LGL. I was hesitant to join this group as I have been essentially asymptomatic following my diagnosis. The fever, edema and fatigue left shortly before visiting MD Anderson. My white blood count returned to normal within 4 months of diagnosis, and neutrophylis and lymphocytes reached normal range within the first year following diagnosis. I have not required any treatment, and I am able to lead a normal lifestyle. Yet, I do have occasional health issues I feel may be related to the LGL. I also want to stay as healthy as possible to maintain my current status. The wonderful doctor who diagnosed my illness has since retired. I researched all local doctors before selecting my current doctor, but I am not happy. On my last visit, I saw a nurse practitioner (I didn't mind not seeing the doctor.), who only read me the results of my bloodwork and set up my next appointment in 6 months. Didn't check glands, spleen, liver, etc. So I hope to get lots of info from you good folks to make up for the lack of support from my local doctor. I am 61 years old, married, 4 children, and 7 grandchildren and I am still working.

Dear Plowe, I too have nk lgll. Have not found anyone that has this. I see a local oncologist every two months and Dr. Loughran every year. I am on his registry and have blood tests every 6 mos. I am 64 and have 5 children and 17 grandchildren. Fatigue is my only symtom and I have that occasionally. My white counts are normal. Most others are not. Neutrophils are about 1.0-1.3. Not too bad. Would love to hear how you progress. Harley

I was diagnosised with LGL in January of 2010. I took six years worth of CBC results to my primary care physican and said, 'look at these numbers...what's up'. The flow cytometry results are typical for a slow progressing LGL. The hemo-onc doctor said that at this time a bone marrow biopsy would only have a 50% chance of confirming the LGL diagnosis. He and I have opted to wait for the biopsy. This year I was diagnosised with a cardiac arrythmia. For the last three years I have had increasingly worse fatigue and cognitive function (referred to as 'brain cloud' in another part of the forum). At this point I am unable to work and/or enjoy life. Could some of you share your experiences with fatigue and brain cloud with me. Such as...when did you first notice these symptoms. Did you have trouble getting your doctor to believe you. I believe my doctors think my fatigue and brain clouding are all in my head. Thanks.

Hey Theresa and New Members (Welcome!) - We've been on a constant roller coaster ride for the last few months. I have been completely overwhelmed with working and trying to keep up with dr's appts, etc., and taking care of the family. I'm exhausted. Getting on this forum became too much and I wanted to escape any reminders. We're gearing up for my husbands next routine appt with the hem/onc (so I'm back and getting refreshed on information). His last gene rearrangement test was inconclusive so they are being cautious with any "labeling". He's been in the hospital twice since then with extreme blood in the urine. It's been intermittent for 2 years but has become more consistent and heavier at times. Anyone else have that problem? The spleen pain is the same but the spleen is not always enlarged. Pain in the lower left abdomen is consistently there and within the last 6 months his bone pain has gotten worse and it seems to travel. The dr's in the ER treat him like he's just there for a drug "fix". But it's real. The other day it was just in his left arm but sometimes it can be in both arms or down one leg. One warranted trip to the ER he was in so much pain that lying down produced too much pressure on all of his bones and he was crying from the pain. I feel so helpless watching him go through this. They tried him on an antiviral for 6 weeks but then the blood in the urine progressed so they stopped it. They want to try steroids now but he's refusing. Some days are better than others but none of them are normal. I don't think we'll ever have "normal" back. Right now I'm just hoping for a few more "better" days than the bad. His blood work is still crazy, up and down. Anyone else ever heard of this: if they tap him for a CBC, say on hospital admittance, his labs look fine. Platelets are sometimes even normal. When they tap him again, say 4-8 hours later, his labs are off. Platelets go down, neutrophils go down, lymphocytes go up. And with each subsequent blood draw it gets slightly worse. Personally, I think there's something to this but the one hospital we go to treats me like I have two heads. And it's the best one in the area. That's enough about us. Hope all is well with everyone else. Looking forward to catching up!