Personal Good News on the CLL (chronic lymphocytic leukemia) Front at OSU

Selfie with Roy Lichtenstein's wonderful sculpture at the Columbus Ohio Airport 

Perfect weather in Columbus, Ohio and a lovely walk in the woods with OSU friends the day before my OSU clinic morning with Dr. Byrd.

The Columbus airport is in the throes of construction so they have moved the marvelous structure by Ohio State University alumni, Roy Lichtenstein to a more accessible site where I could snuggle up to his flying brush strokes.

At the James Cancer Hospital, my vital signs were all good with my usual healthy low end of normal blood pressure, no fever, slow pulse, and stable weight.

Physical exam revealed no surprises (no enlarged nodes or  organs), and my lab was rock steady. Red blood cells were just the tiniest bit low, platelets were stable in the high 300's, neutrophils were good and my absolute lymphocyte count was 1.2.

My immunoglobulins are still very low except for "my" IGG level. The "my" is in quotations as the source of my normal IGG on the blood test is from many other generous souls whose blood donations were pooled to produce my every seven weeks infusion of IVIG that boost only that one antibody. As of today, there is no known way to raise my poor IGA and IGM levels.

Blood chemistries were all perfect with my happy healthy liver and renal function tests, electrolytes, and blood sugar. Clean living has its rewards. And ibrutinib is less likely to inflame the liver compared to many other cancer therapies.

Everything tested really hasn't changed much in over a year. Rock steady. I like it.

My only complaint is that appointment was at 9 AM and it's 12:30 now and I am still waiting for my magic grey pills (PCI-32765 AKA ibrutinib) to be dispensed so that I can skedaddle. I was hoping to catch a 12:30 flight out, but that is sure not going to happen. There's another flight in a 90 minutes, but it is fully booked. Miss that I will be sitting at the airport for several hours.

Tomorrow, due to a quirk of scheduling, I do it all over again in San Diego at UCSD with Dr. Kipps.

It's all OK, especially when the news is so good.

PS: I  did nab the very last space on an earlier flight (that left late of course) to Chicago from Columbus, then had to race from one side of the airport to the other at O'Hare to snag my standby seat to LAX just as they were announcing the flight was closed, waited forever for the shuttle to my offsite cheaper parking, discovered too late that the 405 freeway home was stopped dead due to a car fire, so I snuck off going around a barrier as I missed the last possible off ramp, and finally made it home  using surface streets for a great vegan dinner and a short refreshing swim. Now time to sleep. Traveling is not for wimps, but life is good.

Visit to OSU: All Good

My Picture for OSU Poster Campaign for their Clinical Trial

My wife and I had a wonderful visit to OSU and Columbus for many reasons, and will share more soon, but for now let me just reassure those who have been asking: my lab remains mostly boringly normal (I am not even anemic by the standards used at OSU, and my platelets, ALC, ANC, and all my blood chemistries are just fine) and my CT scans continue to demonstrate stable to slightly smaller nodes in my gut. The changes were very minor but they were all in the right direction.

Dr. Byrd says the pattern of rapid node shrinkage over the first few months followed by stable disease or slow improvement is a common pattern observed with ibrutinib.

Some of my gut nodes are still bigger than I would want. The only two nodes left that could be called  pathologically enlarged are one near my liver that is unchanged in the last 4 months at 0.7 x 3.9 cm and a second in my right pelvis that is slightly diminished at 1.2 x 2.2 cm, but I can happily live with that news. I had an 11 cm node and other massive clusters when this trial began so this is a huge improvement over my former lumpy bumpy self and my disease burden is slowly shrinking.

The news is all very good.

More to share soon about our tour of Dr. Byrd's lab, my "poster" in the hall of the James, the knee deep fields of Kentucky Bluebells in the metro parks, the amazing Mark Rothko exhibit, and the important research being done at OSU.

Overall, it was a wonderful trip.

Clinic tomorrow, home the day after

Longaberger's Home Office, Newark Ohio

LA Kings lost. No solar eclipse to admire in Columbus. Some heartburn. Muscle pains and my pimple.


I am am not worried.


Little new to report, but tomorrow is a clinic day with lab and exam. Two weeks of ibrutinib, the magic pill for CLL.


Will let you know the latest.


Flying home on Tuesday and then onto Las Vegas to lecture to about 200 family doctors on CLL.


Then back here, then home, then back to Columbus, then to Orlando to lecture. All this takes place over about a 10 day period. Only then do I get to fly home for almost a month, the beginning of many monthly visits to Columbus.


It's worth all the hassle and stress for the results I am getting.


Fell in love with Columbus, but ready to return home to the Pacific coast and dip my toes in the waters and see my boys and my cat.


As a sweet parting nostalgic treat, saw Peter Noone with Herman's Hermits on Saturday in Newark, OH at the beautifully restored Midland Theater. Great fun. The crowd was not young (more than a few walkers), but we all had so much fun.


Drove to the nearby world famous Longaberger's Home Office. They make baskets if you were wondering why the choice of building motif. It's one of the classic Americana roadside attractions for sure. More fun.


The classic old central courthouse and waterworks castle with its turrets and the downtown murals of bygone days of skating on the canal and more were wonderful to see. but the architectural highlight has a disabused 98 year old corner bank by the important American architect, Louis Sullivan. Some real gems in this small Ohio town. I am loving central Ohio.

Walking in Hocking Hills, Ohio

Rock House

Wading in the water at Lower Falls near Old Man's Cave

The Gorge near Old Man's Cave

Conkle's Hollow

An amazing walk through enchanted forests inHocking Hills in southeastern Ohio. The more I walk the less I hurt and the less I fret, so I walked miles today. More pictures than words today is the result.

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.

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?