*Has anyone ever had a zero neutrophil count not caused by chemo drugs? Mine was zero for 6 wks caused by LGL until Neupogen finally kicked in. Now Neupogen is causing massively enlarged spleen (24 cm) and I have to stop it. Don't know what to try next. Been on Pred 40 mg every other day for 5 months trying to decrease the spleen but that's not working. I've treated this LGL very conservatively based on quality of life not cure. It's been 7 years (although i've had it for over 30 yrs traced back) and now not sure where to go from here.

Have you had any luck? I hope all is well.

Chitown35 - are you in Chicago?? MY mom has LGL and we are not satisfied with her treatment, which is essentially NOTHING. Her fatigue grows daily. Here numbers are abysmally low. We need to find a doctor who knows about LGL, and is willing to take a more proactive treatment approach. Can you help?

I have had zero neutrophil counts for about four years. I am 65 years old and have had LGL for the same number of years. My counts have varied from .oo1 to an occational high of .4. I take take Tacrolimus and an occational prednisone and oxycodone for pain. (I have other ailments like so many of us on this site)

Yes, I am in Chicago and go to Northwestern for treatment. I recommend Dr. Jane Winter. She was referred to me by Dr Loughran and is very personable and willing to answer questions.

I wonder what is the normal range of Neutrophils used in the US. Here is Australia the range is 2.0 - 8.0 (x1,000,000,000/L). Just want to know how it translates to the system used here.

On my records, it says the range should be 43-71. Hope this helps.

I had a zero count for about 4 months earlier this year. At the time I had been 2 years on Neupogen, but it stopped working. My doctor then tried me on Methotrexate then Cyclophosphamide. I failed on both due to decreased hemoglobin and platelets. Third time lucky...he then put me on Clyclosporin, and for the past 3 months my neutrophils and white count are in the normal range...first time in 3 years!

Methotrexate and cyclosporine didnt work for me. I just finished 6 cycles of cyclophosphamide and my hgb is 13 and climbing, neutophils are around 1000 and platelets have gone from around 20 to about 55 and holding. Everyone in the house has been sick but me lately. Maybe its tge h-atg from over a year ago finally working. Im not getting to exicted but am happy. I am on ritalin to help with fatigue and celexa to level out my mood. I am feeling better than I have in a while.

Had spleen removed 5 months ago. It weighed over 4 lbs (which the drs did not expect). It had to be peeled from the tail of my pancreas and also surgeon found enlarged liver. My platelets returned to over 700 day after surger (60 before) However the spleen was found to be full of b cells which were Non-Hodgkins Lymphoma. This had spread to the liver and lymph nodes. Now I have t-cell LGL and NHL which is really rare to have to different lymphomas. I'm taking a break from Cancer right now with no labs, scans, etc. Need to clear my head to decide whether to take Cytoxan, high dose Prednisone. It's very difficult for me to deal with side affects of Pred even on low dose. Cytoxan is so toxic. Just want to preserve quality of life - not spend the end of it miserable from the treatment. Still thinking about it. I don't have to take Neupogen any more and platelets are fine now! :)

So sorry to hear the news, but thanks for the update. This condition that we all share seems to take a different direction in each of us. I wish for you laughter, love and knee deep powder.

Thanks! Life is good. I've come this far and have three beautiful grandchildren. Still trying to decide about the Campath. Actually had lot of improvement removing the spleen. Especially fatigue and platelets. No more Neupogen. Just need to get my Lymphocytes out of the 80 per cent range. :}

Hi there! Sometimes I feel like a cheerleader for Campath, but it appears there may be a downside...when I asked to have my powerport removed, the Physician asst cautioned me against it. It seems that I have a high chance of developing Lymphoma. I asked the doctor if I could get it out and he said let's hold on a while longer. I was too scared to ask about the Lymphoma risk, and didn't really want to know. I am 20 mos remission and have been doing fantastic. Will graduate nursing school in May...

Mmmmm. Interesting. I was told the b cell lymphoma is easy to kill and slow growing but since I have both the NHL and the T-Cell LGL in my liver and lymph nodes I have ignored that. No matter how good the response - its all still toxic. High lymphocytes are my main problem now which would amount to just treating LGL. Pred helps but I have such severe side affects and feel that previous use is what suppressed my immune system enough to cause NHL. Ducky, don't worry about what could happen...just keep on going. I really don't think about this stuff unless I have tests or dr. appt. This little holiday break from cancer tests has really done me good. Thinking about one more month (unless the oncologist e-mails me). :)