Celebrating My Two Year Anniversary Today on Ibrutinib for My CLL (chronic lymphocytic leukemia)

Much has happened in the last two years, most of it very good.

On a personal note, I swallowed my first 3 battleship grey capsules of PCI-32765 (it wasn't even called ibrutinib yet) on May 7, 2012 in a Phase I/II clinical trial at OSU with Dr. Byrd.

Two years later my lymph nodes have shrunk to less than 1/2 their size with the possibility that all that remains on the CT scans is the scarred shells of what used to be cancerous nodes.

Today, to find any CLL in my blood, you can no longer rely on the standard bloods test but must do the vey sensitive flow cytometry to find the < 0.3% of cells that are still clonal.

My latest bone marrow biopsy was 15 months ago in Feb. 2013 and even back then it showed only 4% CLL by flow cytometry down from between 10%-20% a year earlier.

I am clearly in a very deep and deepening remission.

I am very grateful.

On a community note, ibrutinib, the first in class signal blocker (BTK) for CLL, received breakthrough approval in the USA for anyone who has tried at least one prior therapy based on its outstanding safety and efficacy data in all patient groups, including those with 17p deletions and other hard to treat clones. But it is broadly available to any of us who have tried but not necessarily failed just one prior therapy.

Obinutuzumab, a potent 3rd generation monoclonal antibody (mAb) is now on the market and is getting complete remissions with the wimpy help of a touch of chlorambucil in clinical trials. Clearly it is this new mAB that is doing the heavy lifting.

Idelalisib, another  exciting targeted oral medication, should be approved later this year based on its stellar efficacy results in pivotal trials with few adverse events.

ABT-199 is proving to be perhaps the most potent oral agent yet in difficult to that patients.

ONO (ONO 4059) and Infinity (IPI 145) and others have very promising signal blockers well into development.

ROR1 trials are just beginning and should offer laser like focusing and very little off target damage.

CAR-T therapy has pulled a handful of patients from near death to deep remissions.

I was revising a 2012 CME (continuing medical education) on CLL program that I will be giving in Baltimore in June and realized just how far we (and I personally have) have come.

I am very grateful.

After  all, we are all in this together.

I think I''ll enjoy some  home made coconut milk yogurt to celebrate the amazing progress.

Visit to Pharmacyclics to Say Thanks for their Work on Ibrutinib

I was delighted to have the unique opportunity, as a patient in one of their trials, to speak to the staff at Pharmacyclics, the people who make ibrutinib (PCI-32765), to express my thanks and to put a face and a personal story to the statistical plots.

As all us CLLers know, every point on a Kaplan Meyer curve is (or sadly was) a living, breathing soul, a mom or dad, a husband or wife, a sister or brother, a friend or co-worker with a story to tell.

I came to tell mine and to say thank you from me.

And to say thank you from my whole family.

This picture was from my daughter Heather's wedding last month in Chicago, by the lake. I am at the far left.

For me it was very emotional. I have been lucky enough to speak in front of thousands of healthcare providers and patients on CLL but now I was talking to the people who make the medicine that, in a significant way, was allowing my very act of speaking possible. Usually my slide deck comes with lots of scientific slides and a few jokes. This time it was, by design, full of personal slides, very little science (my audience was full of scientists who work on the molecule daily) and still a few jokes. 

I told my story and said thanks.

What I wasn't expecting from this small but growing biotech company based in Silicon Valley was the genuine warmth of my reception and the commitment of the team, from CEO on down, to improving the care of patients in general and those with CLL in particular. Scores of employees waited to shake my hand and introduce themselves.

I was humbled and astonished.

I am a very lucky guy.

I need to quote Gilda Radner once again.

"If it weren't for the downside, everyone would want cancer."

Remember, we are all in this together.

There are lives in the balance

A painful truism in the practice of medicine is that nothing is ever casual.

No off the cuff remarks or comments are allowed. Non-medical people don't always get it. When a doctor says something, whether it is the clinic or the hospital or on the phone or in an email or during a meal or a hockey game, it has the potential to alter lives and can lead to actions that simply can't be undone. There are lives in the balance.

This is not the familiar G-d delusion that afflicts too many in my chosen field. It is the recognition of the awesome responsibility that comes with a little knowledge.

I don't for a minute believe what I say alone determines what others do, but I would be naive and self deceiving if I said I don't think I influence choices.

Today I was touched to the wick of my soul by a post from my friend Wanda on her Caring Bridge site by her thanks for nudging her towards her courageous choice of an "experimental" transplant protocol at Stanford.

I am simultaneously blessed and challenged by this burden with its mix of joys and sorrows.

This is not a burden that I can or would want to put down. A doctor is always taking a risk with someone else's health when he or she is less than thoughtful with a medical comment.

So my dear friends, please understand how hard I have worked to lighten up, to be comic force in the dark world of leukemia and all the existential decisions that diagnosis engenders. It doesn't come naturally. I am just fighting to balance both my innate and professional tendency to lead with all that possibly can go wrong.

I love what I can do and the world that my leukemia has opened to me.

I just get tired at times.

Heck, I am no G-d.

I am not even a specialist.

Two Year Anniversary

Today I celebrated, not only the birthday of the country of my birth, Canada, but the second anniversary of my hematopoietic stem cell transplant.

I am grateful to be here and so well. Others were not so blessed.

I have managed to avoid much of the grave toxicity of treatments which have knocked back my CLL and my fearsome complication of low platelets with a minimum of side effects using my most "unorthodox" approach as described by Dr. Kipps.

Yet I get tired of all this dancing around to avoid heavy duty chemo and still keep the CLL/ITP at bay. My maneuvering has bought me almost 5 years But it hasn't been enough time to find the cure. Not even close. How about an orthodox therapy that will save my life and that of so many friends? The only option out there is still a transplant, and I am more and more realizing how lucky I am to have had such a benign if failed course after mine.

We are all tired of the waiting for the magic bullet, our own Gleevec, a relatively non-toxic very focused small molecule that revolutionized care for our cousin disease, CML. CML used to top the list of transplants. Not anymore since Gleevec.

We are all tired of dancing and are looking for a more healing partner than old school chemo.

Will it be CAL 101 or Revlimid or ABT? I doubt it, but they are strong moves in the right direction. I have hope.

In the meantime, what choice do we have? We dance on. After all it is my rebirthday and I am deeply thankful to be alive and writing this note.

32,000

That was my platelet count today.

No way to sugar coat it. This is bad news. To say otherwise, to borrow for my last post would stink up the place with the powerful and obnoxious odor of mendacity.

Before I go into the details of what I see in my road ahead, I need to thank a few people.

The radiologist at St Jude triple booked my CT scan, the lab staff stayed late to redraw my blood (and give me a proud tour of their new facility), Dr. Sharma acted quickly and decisively to get the ball rolling, Dr. Forman weighted in and seconded the plan expeditiously by email, the nurses were all great getting the paperwork aligned, the scheduling staff at the hospital and at the clinic wrought miracles, and my wife was right there for me.

It will all be fine, just different and busier, but fine. Have no doubts. It will all be fine.

No panic, please. No big changes. I am just turning off the cruise control and driving myself, with a lot of help from my friends. I am still heading to a place of a healthy old age. And I still plan to have a hell of a time getting there. No stinking ITP is going to spoil my fun.