Just joined. Diagnosed with T-Cell LGL in May '12 with ANC at 0 and BM not responding to Neulasta shots anymore (after 11 years). I had the ATG-horse, prednisone 60mg, neupogen shots, and cyclosporine then. My BM responded with the neuts within 3 weeks and I was sent home. Had horrible ulcers during the stay. But the effect didn't last as the neuts came down with the lymphs again going out of proportion within the next 4 weeks. I continued with cyclosporine 400mg daily and preds and Imuran was also added a couple of months later. Not much change other than ANC fluctuating b/w 0 and 600 but I didn't get sick during those 4 months and no mouth or tongue ulcers – which I seem to get from biting or eating sharp food and becoming real bad after that. Consulted with Dr. Loughran mid-September and switched to MTX 20mg weekly with the preds again jacked up to 60mg for a month. A month later, there was a sudden spike in ANC to 2000! Was so happy but just a week later, it all came down to near 0 again. Two weeks later, I was admitted to hospital for running a fever above 101.4. Again, with a couple of bad mouth ulcers. Got IV antibiotics but was taken off MTX (for reasons still unexplained to me) and was sent home a week later. So no immunosuppressive treatment for a month before I ended up in the hospital again in mid-November (with fever above 101.4 and new ulcers on the tongue – bit myself again). Docs weren't sure about what's causing the fever other than some sort of infection due to potential febrile neutropenic condition. Again, on IV cefepime during almost two weeks of stay before coming home but now on Cytoxan 100mg with jacked up preds of 40mg daily. This single, most horrible ulcer ever on my tongue is still persisting and is the cause of extreme stress and pain. Have had fever going above 101.4 twice in last two weeks including earlier today but I decided to override the standard protocol of reporting to the hospital as drinking lots of water helped bringing it down. Fully aware I'm almost playing a doc here as things could get out of hand but I have some valid reasons to believe that it somehow justifies the decision. I strongly suspect my unhealed ulcers as the culprits causing the fever. ANC is still at 0 from yesterday's lab though I know I need to give cytoxan a chance and necessary time. Ready to report to the hospital if fever would remain above 101.4 longer than my expectations. Definitely some trying times but I need to remain positive, strong and full of hopes. I would love to hear from you all with your opinion, suggestion, anything... I'm living this every minute of it and extremely stressed out. Looking to feel better and think at the least that I will be alright…which I know I will. Thank you!

Hi Solid Orange, I was diagnosed in April of 2012 with LGL. I'm 48 with two young boys. So far I have been lucky. I'm taking 20mg of Methotrexate weekly and it has helped bring my lymphocytes back into the normal range. My neutrophils are still low, but maintaining. I ran the Chicago Marathon last year with Team in Training. Running actually helped my blood counts. Right now I'm dealing with a chronic sinus infection that won't go away. I had the same issue last year and that is how they found out I had LGL. I wish you the best and I hope you can kick this last round of illness.

Hi, Solid Orange, First, let me address mouth ulcers, I have had really good luck with CloSys mouthwash. At first use it several times a day til the ulcers are gone. Then like a regular mouthwash. I've been dealing with this for the last 10 yrs and last 30 yrs traced back through old labs. I look at this from a quality of life perspective keeping treatment to a minimum. I was on Neupogen shots until I had my spleen removed and my platelets and neutrophils came back to normal. It's been five months and now my lymphocytes are high and I am considering Campath as nothing else has worked in the past. I can feel the stress in your post - please try to take a deep breath and slow down a bit. Find the treatment that gives you the best quality of life and go with it. I sent my oncologist an e-mail in November telling him I am taking a break from Cancer - no labs until January. This has done my mental stress alot of good. Just needed a mental break! As for the fevers, just go with your gut. If it gets out of control you can get the antibiotics. I had a really bad flu last year with fever 103.8 and didn't go to hospital because i tested positive for flu and knew it was a virus. Of course, I got a sinus infection a week later but treated with antibiotics and everything was fine. You can manage this with a more conservative approach. I'm lucky to have found an oncologist who is willing to work with me and give me a lot of input into my treatment. I really don't think about the LGL unless I have labs or dr. appt. Hoe this helps- think we all have some sort of weakness that causes us problems. Mine is sinus infection. If I feel one coming I call my doctor, get antibiotics and have never had to go to hospital This is just part of our "Normal" and we have to manage it the best we can while maintaining a quality of life worth living. Good Luck- I'm praying for you!

Hi tkuhne, It's great that you are responding well to MTX. I was curious about your lymphs and neut counts, if you didn't mind sharing. Right now, my lymphs are around 90+% (# b/w 14 and 4.9) and neuts around 0.2%, essentially # 0. How long did it take to improve the lymps once you started MTX? Thanks.

Hi Sking. Thank you for your helpful feedback. Have I been stressed out? You bet! :) Things definitely have gone downhill much too sooner than expected since the diagnosis, especially in the last two months. Can't seem to get out of this cycle of nasty sores in the mouth and fever here and there with ANC staying at 0. I'm with you on focusing on the quality of life and I have tried my best and keep trying but the phase I seem to be in currently makes it hard to ignore the conditions and its effects as the consequences are rather direct and real. I too had my spleen removed in '07 mainly due to it getting bigger, some frequent neutropenic fever as well as plates trending downward. It came out much bigger than expected. The cyclic neutropenia that I was going through then wasn't affected as I continued to rely on neulasta shots every 21 days. Plates did come back to a higher range - but for some strange reasons, they are shooting around 550-620 range recently. Docs aren't worried or so that's what they tell me. I got on this site at 1 am last night and couldn't get off till 5 am. I read about your other post on CloSys and my dentist wife already had the bottle in by the time I was up again. Used it 3 times already and now being so hopeful as I'm getting so tired and irritated by this persistent sore on the tongue. As for the quality of life, I'm getting out RIGHT NOW with the wife and 6 year old daughter...just to visit some friends. Haven't done this in two months! Don't feel so good with some low fever in the background but will have the mask on for sure. Will deal with whatever happens...what the heck! :)

I am in Australia, have only seen a hematoligist once and my GP monitors my blood tests. My lymphocytes are around 6 and the norm is under 4. I too get nasty mouth ulcers, I tried the CloSys, it didnt improve the ulcers for me. I tried another with the sme result. Luckily I was ulcer free over Christmas, They come back at any time without warning..I find I get a few more colds and sore throats than I did before. I go to the gym three times a week and try and stay positive. I'm glad I found this group and an get info off the internet. There doesnt seem to be many that have this condition.

Hi Pamela. Yes there aren't many with LGL as it's a very rare subtype of leukemia. I'm very likely the only patient with LGL at this major cancer Institute that guides my Tx locally. But having access to Dr. Loughran has helped me stay the course. When diagnosed, I couldn't find an online patient support that was consistent and easy to access and participate in. That’s what led me to form a Facebook group for the LGLers recently and I've been trying to spread the word ever since. The group is growing and more members would make even bigger difference. Please consider joining the group. Here is the short link: http://goo.gl/Ekzl8 Thanks

No results when I tried the link. Pam.

Hi Solid Orange So glad you're getting out! I push through and every time I am glad I do. I always feel so much better mentally and physically on those days. I didn't get to eat salad or other raw foods for 5 years until I got on Neupogen. I was giving myself the shots which made it easy for my doctor and me to experiment with the dosage - took a while but my anc finally came up and stayed up and I could once again eat whatever I want. I can't help but wonder if your hospitalizations and antibiotics you were given are part of you feeling the way you do. Seems your in a cycle. I know how antibiotics make you feel and take a toll on your body. Please try and push through for a while and let your body settle back to its normal. I also used probiotics (Culturell and Florastor to help replace my good guys). Do this safely, of course, if you have a really high fever for no reason you can see you must call your doctor. Use the CloSys like medicine several times a day. I know it will help. They also make a toothpaste. I get mine at Walgreens or online. Try to do as normal things as possible but if you need a nap you need a nap. I just know you are going to feel better and be doing your favorite things again.

Pamela. Let me try the link again here. It is also listed as a website under my profile. Or you may copy it and then paste it as a URL in your browser. Searching for 'LGL group' directly in facebook should also get you there. Please let me know. http://goo.gl/Ekzl8

Hi Pamela, it link worked for me. I had to copy it into my browser and it took me right to the page. Thanks SolidOrange for setting this group up.

I copied it into my browser too. Will try again. Pam.

@Sking. I'm considering a 2nd outing tonight! :) I don't really know if it's the antibiotics (mostly iv Cefepime at the hospital, amox-clav, bactrim, acyclovir, fluconazole, etc while at home) but I'm not so surprised that my body is reacting this way as far as fever is concerned - ANC is 0 and I'm still dealing with that horrible tongue ulcer. A chronic sinus infection could still be lingering on... Hard to tell as docs also don't have anything else to explain. Febrile Neutropenia perhaps. And now on the new chemo, cytoxan could take the blame? As long as the fever stays low and not for a lengthy period, I'm going to hunker down. One day at a time, I guess.

Your immune system is obviously suppressed from all the antibiotics. If only you could stop taking them and "reset" your body to whats normal for you. I take Doxycycline for sinus infections. Have you tried Neupogen for your anc? Curious about the Cytoxan. Thats the path my dr is wanting to take to lower lymphocytes. He likes pred but I just hate it so much. Cant decide what to do - Still on my break ( :) ). Did your spleen show any LGL t-cells? Mine had b-cells (NHL) and T-cell LGL. Has your liver enlarged? Mine has both cancers along with my lymph nodes. After 30 yrs looks like I may have to consider some of the big gun drugs...........or not....