Monday, February 20, 2012

I'm in.

First step was a quick trip to Columbus, Ohio to meet the trial team at OSU and see if there was a fit between what treatment I needed and what PCI-32765 or similar trials or treatments they could offer.

Dr. Byrd dutifully told me of my conventional treatment options that he would recommend if I wanted an existing conventional treatment. He recommended against FCR for me due my ITP, but BR would make sense. I declined his obligatory offering of all the options and focused in the real reason for my visit, the chance to get some PCI-32765.

We quickly dismissed the shorter more convenient diet trial, not because it called for measuring the absorption of the oral medicine, PCI-32765 after either skipping breakfast entirely or a Jewish vegan's nightmare fatty breakfast of eggs and bacon (or the kosher vegan equivalent if there is such a thing), but because the trial was FDA mandated and as such, would be much less flexible.

Instead, we zeroed in the investigator initiated third and final cohort of trial of PCI-32765 + O (Clinical Trial NCT01217749).

Then they had to make sure I fit all the inclusion and none of the exclusion criteria. I did. I was in because my B cells had recovered their CD20 dim status (necessary for the ofatumamab to work) and they counted the rituximab for my ITP as one of my two failed therapies. And there was no exclusion for a prior transplant.

Next it was critical that I understood all the risks inherent in an early phase trial. No assumption that because I was a doctor, they could gloss over the details. They spelt them all out- infections, subdural hematomas (bleeding into the brain), diarrhea, GERD, rashes and more.

Undeterred, I said yes. They said yes. Consent done.

Now would the insurance say yes to an expensive out of state trial? They have to cover in state trials, but out of state coverage is more problematic.

After a few paperwork and fax snafus, my angel from Blue Shield very quickly told me it was a go.

Now my life is on hold until I get my schedule for the next 8-12 weeks of weekly appointments at OSU. That should come soon.

In the meantime, I have temporary lodging lined up, I know of some of the nearby synagogues, and I have found what little organic vegan food (ironical much of it is imported from California) there is to find in wintery Ohio. A dear friend who teaches at OSU has made social introductions to fellow professors for us. We have a map of the regional parks to explore, and my computers are fit and ready to travel so I can research and write up a storm while in Ohio. I have friends to commissirate with who are already getting care in trials for their CLL at OSU.

We have someone to house sit and collect the mail. I still need to book the flights, rent a car, plan my frequent return visits here to see my patients, pat the cat, teach, pay my taxes, and get my IVig and arrange a few hundred small things.

It is all so exciting and promising.

It's time to wait and hurry up.

It's time to celebrate another shot at a long healthy life, even with cancer.

I am so lucky, so blessed. I must use this gift to make a difference. I promise I will.

I move forward with deep humility and gratitude, more than a pinch of trepidation and a freight train of wide eyed optimism.

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8 Comments:

Anonymous Anonymous said...

Congrats Brian. Will be looking forward to seeing some great results for you!

Tom B

February 20, 2012 at 9:41 PM  
Anonymous Anonymous said...

Wishing you lots and lots of luck Brian

love from London
Susan

February 21, 2012 at 7:19 AM  
Anonymous Anonymous said...

The will of God will never take you where the grace of God will not protect you?
Prayers and luck
Bunny Collins

February 21, 2012 at 7:38 AM  
Anonymous Anonymous said...

Well this is very good news. At least you will be going to OH when the weather starts to improve. Hopefully you will keep us informed during your stay. As to kosher-vegan bacon, look for Smart Bacon next time you are in Whole Foods or the equivalent. That and the sausage look-a-like, Gimme' Lean, satisfy both requirements. Regards, TomD

February 21, 2012 at 10:15 AM  
Blogger Tamara said...

Here's to life and all that comes with it! Blessings on this next stage of your journey!! :)

February 21, 2012 at 10:47 AM  
Blogger David Arenson said...

Congratulations, Brian. Persistence pays off. I hope the trial exceeds your expectations!

Cheers,

David

February 21, 2012 at 11:26 AM  
Anonymous Anonymous said...

I wish you all the luck in the world and I am quite sure you have already made a difference.

February 21, 2012 at 12:46 PM  
Anonymous Anonymous said...

Congrats Brian, I am also out here in oh 4 weeks in.Only diff. is I am from Mn. so it is not winter as far as I am concerned. You are going to love the ofa I went from over 500k wbc to 90 with one reduced (300mg) dose.

February 21, 2012 at 2:26 PM  

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