About 10 months ago I was diagnosed with T Cell LGL. Like almost everyone else the diagnosis was accidental. My GP noticed my Monocites were elevated while trying to diagnose an unexplained fever that I had had for several days. He repeated the test 3 times with the same results. He then refered me to an oncologist who, after sending my blood work to a university for analysis, told me I had LGL. Since then I have been hospitalized twice with an unexplained fever and severe headache that lasts several days. After Googling LGL Symptoms, I discovered that an unexplained fever is a symptom of LGL. I also noticed that fatigue, night sweats, and weight loss were also symptoms. I don't have the weight loss but I do have the other three. I guess my question is is there anything that you can take or do to aleviate the fever and fatigue? My oncologist just throws me in the hosp. and floods me with IV antibiotics. Any help would be appreciated. Ray

Hi Ray, sorry to hear about the fevers and headaches. My only symptom seems to be mouth ulcers, I just get over some and the next lot are there, I have been trying Clysos mouthwash that was recommended to me here on the forum, but I've been using it for over a month and no change.. I have six monthly blood tests. Pam.

Hi Ray, To me personally, I had no symptoms at all. Besides monocytes, were there any blood counts below or above normal ranges? Cheers, Herman

Hi all, Question for you....I keep hearing that people with LGL have more frequent infections. Is this true for all of you? So far I haven't even though I have moderate neutropenia. Do most of you follow neutropenia diet? It's so restrictive....I hate to follow it unless necessary. My dr. doesn't give a lot of advice. One last question...do ysome of you take antibiotics before dental work/cleaning? Watching my mother dying from lymphoma is making me paranoid about my future.... Thanks....I really appreciate having a group to turn to who understands.....

Does anyone out there take Darbepoetin ? I've been getting 2 shots a month for over a year and my blood work doesn't change much.

It's hard not to be paranoid. My brother died from colon cancer last year and I worry about my future. Having this condition means it plays on your mind. I haven't told the dentist about my condition but maybe I should. I hadn't even thought of it. Although now I am getting a lot of mouth ulcers he should know. I eat a normal diet and exercise regularly. I always take antibiotics with me when I travel, which is only in Australia at present. Pam.

To sschwartz, I was diagnosed in April 2011. I see my dentist every 6 months for check up and cleaning. I never had major dental work except for removing my wisdom teeth back in mid 90s. When I saw him in June 2011, I told him about my condition. He told me not to worry because his dental equipments are fully sterilised.

Hi all, In my experience, I do get infections more often. I constantly have a sinus infection, and I easily get intestinal infections. Though I don't follow any prescribed diet, I do avoid a few things such as restaurant food and under-cooked meats. As for prophylactic antibiotics, I don't need them yet as my neutropenia is considered mild. In response to Ray's comment, I do get random fevers, terrible night sweats, and very severe fatigue. With the accompanying RA, it's a chore to get out of bed some days.

I feel exactly the same as how Ray put it in the original post.."My oncologist just throws me in the hosp. and floods me with IV antibiotics." in reference to running a fever. Recently diagnosed with T-Cell LGL. Cyclosporine and MTX didn't work exactly. On Cytoxan 100mg since last 3 weeks with ANC still around 0. Have been thrown in hospital 3 times for running a fever above 101.4 in the past two months alone. Pretty depressing. I get iv Cefepime and fever wouldn't return for days which is when they release me... At home for two weeks since my last stay and had twice ran up the fever above 101.4 including today. I took the decision to override and not report to the hospital as the fever went down after drinking LOTS of water as I have observed. A common factor during these past two months: pretty bad ulcers in the mouth. Have one real bad right now that refuses to heal for ANC around 0. THE culprit for fever?? I highly suspect and that's why I don't believe I need to be hooked up with more antibiotics and feel miserable at the hospital. @Smiitner: I was curious how you dealt with the fever and the standard advise of reporting to the hospital. Thanks.

I underwent a bone marrow biopsy for "suspected" LGL Leukemia. I'd never heard of until my oncologist's commanding officer suggested (I am seen by a military treatment facility since my husband is retired army). After reading through all the various symptoms, I'm alarmed at how many I have: Severe migraine headaches, mouth ulcers, moderate neutropenia, bone/joint pain (misdiagnosed as fibromyalgia), night sweats, unexplained abdominal swelling, weakness, extreme fatigue (to the point of taking naps in the parking lot at work). I'm pretty upset that, like many of you, I have been hospitalized several times, and none of my doctors ever picked up on this. As a matter of fact, my oncologist told me "there's no way you have cancer... You're too young (36), this has been going on too long (2.5 years) and your symptoms are too vague. I believe you have Benign Ethnic Neutropenia." She refused to do a bone marrow biopsy in August when I first saw her. I returned 3 weeks ago and pissed her off to the point that she called her CO in and HE is the one who suggested LGL, but said it was so rare, that it was "highly unlikely to come back positive"... Well, it did, to their amazement. I was already in the process of seeking a 2nd opinion from MD Anderson Cancer Center in Houston... I can't wait to see what they have to say.

Hi Akaimi. I'm sorry to know that you have had to go through all these and not get correctly diagnosed. I had cyclic neutropenia for 11 years but this LGL condition appeared this past summer as neulasta shots stopped working. Perhaps you might want to consider getting in touch with Dr Loughran at Penn State Hershey (Harrisburg) for another opinion. He is the guru on this and while a personal visit could be the best, I have heard he does evaluate cases through lab results and other paperwork. He helped confirm mine and has been instrumental in my Tx options since then. All the best.

Btw, there is a facebook group on LGL topics. Copy paste the URL in a browser or search for "LGL Group" in facebook directly. http://goo.gl/Ekzl8

Thank you for the information, SolidOrange! I'd looked for the FB page and couldn't locate. Thanks for the actual link!

It's actually a GROUP and not a PAGE and that's where the search becomes a bit confusing and unhelpful. But I think you are aboard already...?