LGLL Guru

Apparently, the national LGLL guru is Dr. Thomas P. Loughran, who performs extensive research on the malady at the University of Virginia Medical School. He is listed as a physician-scientist on the UVa Cancer Center's website and gets partial funding from the National Institutes of Health for his research. There's a link to the UVa LGLL website under the LGLL Links heading to the right of my posts. He looks like a pretty cool guy and I'll bet he and Dr. Ellis could have a heady discussion about LGLL and hematology in general. I wouldn't want to be the medical stenographer during that conversation.

UVa is in Charlottesville, VA, about 3 1/2 hours from Winston-Salem, not a huge distance to travel if I ever decide I want my large granular lymphocytes to visit the guru. I'm sure he's got lots of people knocking on his door and awaiting entry into the clinical trials that he administers; probably from all over the country if not the world.

The UVa Cancer Center also has a LGLL registry for anyone who has been diagnosed with LGLL and simply wants to contribute to the body of knowledge about this disease. I sent an email inquiry to the registry administrator asking if my specimens and reports were worthy of the guru's attention. I got a nice email back from Holly Davis saying that they would absolutely welcome my participation in the study. Included in the email from Holly were several forms that I and my local doc would need to complete to officially register with the program. I responded to Holly telling her that I would look over the forms and get back with her.

After reviewing the LGLL Registry consent and medical history forms I emailed Holly back and asked her to call me so I could ask some questions. She promptly returned my call that same afternoon. I'm really disappointed that there's not a picture of Holly on the UVa website so that I can post it here too. That's an oversight that sorely needs attention. If I ever visit the LGLL guru in Charlottesville, I'll get my picture taken with her and post it.

Holly was a veritable fount of wisdom about the registry program. It seems that the worst that could happen is my DNA gets swiped by some dastardly third party who may then, in a 1 in a gazillion chance, link it to my name. Horrors!! Hell, I'd much rather deal with that unlikely event than all the banks sending me crap in the mail nearly every freakin' day! In fact, it might be refreshing to have some really weird mail come that was somehow traced back to the my DNA. It's a brave new world out there!

Getting back to my conversation with Holly, (Is she a doc? Should I be calling her Dr. Holly, or Doctor Davis? Another piece of information to get if I go up there.) she told me that I could be a part of the registry and could also become a patient of the LGLL guru himself if I chose. Now that sounds like a great third option! I mean, who wouldn't want to be under the care of the person who practically discovered and named the disease? There has to be huge bonus points for that but where does one redeem them?

"Excuse me St. Peter but I have 25 thousand un-redeemed LGLL points from the LGLL guru himself. Can I get an upgrade on my eternal accommodations? I'd like a flat on a street of gold overlooking the garden of Eden."

So now I have three options for the 'wait and see' phase of my LGLL odyssey which includes periodic blood draws followed by CBC tests and doctor visits.

1) Dr. Paschold at Novant
2) Dr. Ellis at Wake Forest Baptist Health
3) Dr. Loughran at UVa Medical Center

I feel like the wait and see period would be a waste of time for Dr. Loughran. He's got his nose to the grindstone and doesn't need to see my boring lymphocytes until I become symptomatic. Then, he's the big gun held in reserve loaded with clinical trials and all kinds of arcane, yet to be FDA-approved treatment options. If I can get my blood drawn at the local Lewisville Family Practice of WFBH but do my semi-annual or periodic visits with Dr. Ellis, that has some merit. Or, if I want to continue to enjoy great company under warm, inviting conditions with Novant's blood cancer emperor, I could stay on the schedule with Dr. Paschold for quarterly blood draws and semi-annual visits. Mari Jo is of the opinion that I should visit UVa to have an initial meeting with Dr. Loughran to establish a relationship with him and the program.

Each option has advantages and discussing them will provide great dinner conversation. Regardless of which option we choose I think joining the LGLL registry at UVa is a no-brainer. Why not help increase the body of knowledge about this disease? Even though the information may not help me, it may help some poor schmuck later on down the road. If it does, I'll take my accolades posthumously and with great humility as I chill with my dad, Ghandi, Jesus, Mohammed, Martin Luther King, Mother Theresa, Krishna, the Buddha and Linda Ronstadt while sipping on a top-shelf nectar of the gods.