Tuesday, January 31, 2012

Back from Ohio

To start, they know what a vegan is in Columbus and they actually know how to feed and nurture one, which is good thing, because it looks like I am going to staying there for the better part of three months starting sometime in February.

Yes, I was accepted in the trial of PCI-32765 and ofatumumab pending the insurance OK and the intake screening. That will happen sometime in the next few weeks, and the

I was very impressed with Dr. John Byrd and his team at OSU. Thorough, prepared, caring, smart and humane.

I must review pages of notes taken by my daughter, Heather who flew down from Chicago and her studying for the bar in Illinois (she is already licensed to practice law in NY) to be my scribe, second set of ears, and moral support for the whirlwind tour of this cold and windy central Ohio college town.

Over the next week, I will share what I learned, my decision process, and the next steps to get things going.

Right now I am still recuperating from the sleep deprivation of an alarm ringing before 4AM (1 AM Pacific time) to get to the airport on time for our flight home.

But it all going to be OK. They have good vegan food, a new drug that could save my life, and an NHL hockey team.

What more could I need?

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4 Comments:

Blogger Cathy R said...

Best of luck!

January 31, 2012 at 8:33 PM  
Anonymous Anonymous said...

Thank you for sharing. Good luck with treatment! Cannot wait to hear all the detail.

February 2, 2012 at 12:15 PM  
Blogger maronedp said...

Hi Brian,

Thanks for the blog and insights. I'm starting the single agent PCI trial at NIH next month (33 yrs old, p53 mutated etc.) With the exception of progressing night sweats, and platelets around 100, my other numbers are fine and physically I'm in good shape. The NIH trial was a welcome surprise since all the inhibitor trials to this point, as I'm sure you know, were for 65 and older or relapsed/refractories. It also apprears MD Anderson has followed suit with a PCI+Rituxan trial. Hopefully, this will become the new norm for high risk categories. In regards to your discussion about the shifting paradigm of treatments...I like Dr. Keating's comment that three years from now, the new standard of care will be inhibitor drugs followed by CAR therapy. Is this timeframe too optimistic? Perhaps, but certainly not unrealistic. Frankly, it is quite astounding to realize that I will likely be one of the first treatment naive patients to receive an inhibitor drug as a front line treatment. The prospect that one can receive treatment without further compromising the bone marrow through tough chemo-immuno therapies is exciting to say the least. Keep up the good work.

February 5, 2012 at 3:48 AM  
Blogger suzanne said...

Columbus also has my granddaughter Elizabeth's marrow donor, some neat ALL families and the Buckython - a yearly dance-athon to support cancer kids. Hope all goes well!

February 12, 2012 at 10:33 AM  

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