Hi all! Have you heard about the new research involving STAT3? The Finnish researchers think they found the cause of our disease. I put the link into the disorder resources section on the left side of the page, if it gets approved. Otherwise, just google t cell lgl leukemia stat3. It sounds like some of the blood used in the study was from the registry blood in Pennsylvania. Now it should be easier to find a smart drug to treat us! Yippie!

Thanks for that ,Susi. I have gone into disorder reourses section couldnt find it at first ut then noticed the link in my email. Thanks for sharing. Pam.

Wow, that is wonderful news! I will begin a new nursing career in June and wasn't sure how I would handle relapses. (My lymphs are increasing and I expect I will have another round of Campath by January-ish) Maybe now I will truly start a new life!

Not so fast. I recently returned from a consultation with Dr. Loughran and he explained the recent study. They found that half of the LGL patients there was a mutation of STAT3. This is promising because they could develop a drug to target it...down the road. Many years. He advised me to continue on Cyclosporine....for the duration. They still do not know the cause of LGLL Here is the conclusion of the NEJM: "In conclusion, STAT3 is frequently mutated in large granular lymphocytic leukemia, highlighting key steps in the molecular pathogenesis of this rare disease. Structural and functional data suggest that the observed mutations result in STAT3 hyperactiva- tion and may confer ligand-independent signaling. Here is a definition of STAT3 http://en.wikipedia.org/wiki/STAT3 They gave me a copy of the article which was published in May. Not sure how to post a pdf file to this site, but happy to email it to anyone, my email address is emoceri@gmail.com.It is very short. Helpful if you have a background is bio-chemsitry. Elizabeth

Elizabeth - you party-pooper! You are right though, there are so many mutations, this may not even help my defective protein. At least for me there is something that puts me in a remissive state. I will just have to keep plugging along....it is still considered a chronic disease right?

Thanks for posting this reference.

Ducky, I do feel like a skunk at a picnic! I am glad I consulted with Dr. Loughran, MD and joined his national registry. Here were my take aways: * They have 600 patients in the national registry * Most patients see him to get the correct diagnosis. * Still a chronic illness * They know that the Killer T cells never rest * That there is inflammation caused by the emitting of a poison in this process, which may explain why many LGLL patients also have RA. ( this piece was very bio-chem all I heard was "poison" " inflammation" ) * Don't know the cause, but operating theory is it could be a virus, but not sure which. * They consider any neutrophil count over 500 as acceptable. * Risk of death is primarily due to infection. That since my neutrophil counts are in the 700-900 range, that I should continue on Cyclosporine for the duration. If I discontinue I could get an infection. And he has consulted with my oncologist in Seattle numerous times about my case, so I felt happy that I have been getting good counsel. After three years of going through the all the different treatment protocols, ( with the exception of Campath) I am now at the "accept and adapt" phase. I think I will add baby aspirin to address the inflammation and will ask my Naturopath her ideas- I've been taking the usual vitamins, D3, fish oil, garlic, curcumin, something called "Forest Immunity" (cordyceps mushrooms plus others) We have not moved the needle on the Neutrophil count but at least I feel healthy ( and tired) Elizabeth

Take a look at this article pennstatemedicine.org the life cycle of a cancer some hopefull research here a step in the right direction maybe!