The "authority" on LGL Leukemia is Dr. Thomas Laughran, who is the Director of the Penn State Cancer Institute and has a practice through the Penn State Milton S. Hershey Medical Center in Hershey, Pennsylvania: http://www.pennstatehershey.org/findaprovider/provider/view/1119?q=loughran&prevoffset=0 Dr. Loughran recommended Dr. Ron Paquette in Los Angeles: http://www.uclahealth.org/body.cfm?id=458&action=detail&ref=9178 as an "expert hematologist who is quite familiar with LGL" Please add any other facilities or doctors you have had experience with (and where they are located)

I was referred to Steven Coutre at Stanford University Hospital. According to my physician Dr Coutre is the expert on LGL at Stanford. He confirmed my diagnosis. http://stanfordhospital.org/profiles/frdActionServlet?choiceId=facProfile&fid=4695

Thanks for all the glowing references about Dr Loughran. It's heartening to know he's such an active researcher, that he was right there at the discovery of this illness, and that he still takes time to see patients. Quite a number of you or your doctors are in direct contact with him. From here in New Zealand, without wanting to undermine confidence in my son's haematologist it's been a bit tricky to urge him to contact Dr Loughran too. I've passed on info I've found here on RareShare re Dr Loughran and the T-LGL Patient Register, and found Dr L's email address too. My son's haematologist is quite interested and told us he's thinking of contacting Dr Loughran sometime, though not at the moment as my son's doing slightly better for now. It's something he at least knows about now, and we won't hestitate to push for that contact further down the line if need be.

Dr Paquette had nothing to add to my case. I am at City of Hope which is where I would recommend.

My husband's diagnosis has been up in the air for almost a year now. Our local oncologist diagnosed it, then Dr Loughran did not confirm the diagnosis, and now after a third round of blood tests, the local Dr has diagnosed it again. My husband was also just in the hospital for unrelated acute stomach/liver pain with unexplained causes. His Dr said this was a case for "Dr House." Has anyone had luck with the Mayo Clinic? Would be nice to finally know what is going on & then move forward. Thanks, Nicole

Nicole, NIH has a program especially for hard cases to DX. Read an article about it reciently. The doctor has been compared to Dr. House. I know you have to apply because they can only take so many patients. NIH / NIC made my 3rd opinion DX of LGL. They did BMB and much more blood tests than Dr. L did or needed to do. Try their web site, maybe they will have some info. Such a frustrating disease. Hope you can get this answered soon. Hope you enjoy the holidays.

Thank you TJTeresa. Is there a specific Dr you saw? I'm having a hard time finding on their website how to get an appointment or where to apply. Also, what made you go to them after seeing Dr Loughran?

I went to NIH, on the way north, one week before Dr.L. I went to their Clinical Center to be evaluated for a specific study. Here is article on CNN.com: http://www.cnn.com/video/#/video/health/2010/09/24/gupta.doctor.detectives.pt.4.cnn?iref=allsearch FOR ALL: Message boards I use, the yahoo site has been most helpful: http://cancercompass.com http://Large_Granular_Lymphocyte_Leukemia@yahoogroups.com

I have tried (like DDixon) to find the yahoo group without success on several occasions even when I paste the above url address. How do you access this group/discussion board?

Try one of these if you can't find on google: http://supportgroups.ning.com/group/Large_Granular_Lymphocyte_Leukemia Large_Granular_Lymphocyte_Leukemia-subscribe@yahoogroups.com Sorry you guys have been having problems, will be worth it if you can. Once you sign up all posts should just appear in your inbox and you can reply to all or just to the individual if you want.

Has anyone been to a MAYO clinic? If so, would you mind sharing your experience? My husband has an appointment there in March & we are wondering if it is worth it & what to expect. Thanks! N

sorry NLBL, I have not and have never had them recommended to me. Although it is not close to me either.

I have consulted with Dr. Habermann in Rochester, MN. I found him to be wise, kind, and thoughtful, honest but hopeful. His recommendations have influenced the decisions that my oncologist and I have made. He hasn't always been quick to respond to the question "What should I do now/next?", but lets face it, there isn't one simple answer for the long term plan that we would all like to have. Luckily, I haven't had to make any quick treatment decisions. He was the co-author of the ECOG Protocol E5998 that I participated in a couple of years ago. (Dr. Loughran was the principle investigator of that study.)

I have been to the Mayo Clinic and I currently see Dr. Lubomir Sokol, MD, PhD at Moffitt Cancer Center in Tampa, FL. He has published articles with Dr. Thomas Loughran from Penn State. I just signed on to be a lifelong LGL research study, as he is also a pioneer in LGL Research with his grant. I HIGHLY recommend him and Moffitt Cancer Center.

Nicole, I too have had on and of ex concerning LGL, I would like to talk further once I get home, im currently sitting in my Dr's office as I type this on my smartphone. I was sent to the Mayo in Scottsdale and my personal feeling..... it was a wasted trip.

How many of you take part in Dr. Loughran's LGL registry? Do you gain any information about your own personal case from participating?Are you made aware of new research as it comes out? Are there any down sides of being in the registry?

Hi sscwartz I track info from blogs & profiles in a spreadsheet as I thought it'd highlight some trends. From time to time I've posted about it in the thread: LGL RareShare Summary Info (take a look....) Last time was on 29 April 2012 when our group had 135 members, & 25 mentioned they were/had been in direct contact with Dr Loughran. Today (18 May) there are 139 members, but still only 25. cheers Karen

Can anyone recommend a doctor / treatment facility close to Chicago?

Dr. Shu Ma at Northwestern Hospital in downtown Chicago - the Lurie Cancer Center

Hi from chattanooga,tn I go to dr. Dale bixby at university of Michigan. He has helped me so much. Please pass this own. He is specialist in rare leukemia. I truly think he saved my life. Janet bales