Monday, April 6, 2015

...and a quick update

Normally I would spread this out as my last post is a lot to cover, but two important additional tidbits.

Bart is "not retiring" but will be setting up shop elsewhere.  That settles that.  More news to come as it becomes available.

Also, I will be going to see him before he departs.  That settles that.

Now to schedule it all...

A transition in Little Rock

So I received a letter in the mail on the letterhead of Dr. Gareth Morgan, whom Dr. Bart Barlogie had hand-picked as his successor at UAMS.  Bart's intent was to continue treating his existing patients and to focus on research, but to stop taking new patients (except in very rare cases like referrals from his favorite people!) and to cease work on administrative responsibilities related to running the center (which I can imagine included fundraising, hiring, firing, dealing with the local and state and federal government, etc.)

Per the letter, Bart is "retiring from Little Rock."  The letter goes on to speak of the commitment to continued excellence in patient care.

I won't beat around the bush -- I was going to write that I suspect there is more to this than meets the eye, but in fact I *know* there is more to this than meets the eye.  I'll try to limit my commentary at the moment to what impacts me directly as a patient.

I will posit, however, two factors that I believe have gone on behind the scenes.  The first is that I'm sure it was of paramount important to Bart that the treatment philosophy of UAMS -- to wit, the belief that low-risk disease can frequently be cured through Total Therapy -- continue uninterrupted.  I was on a patient panel with the esteemed Dr. Morgan a few months back and unabashedly asked, out of my own self-interest, whether or not he would continue this philosophy.  He gave an answer that was a little more equivocal than I would have liked, focusing on individualized medicine, however this is both a very legitimate perspective and one that doesn't preclude the use of Total Therapy for those whose biology indicates likely success from that treatment approach.  So I was mollified.  I suspect, however, there is a divergence of opinion.  After all, Bart is an iconoclast.  If he weren't, I'd likely be blogging from the big Myeloma Center in the Sky at this point.  But if Total Therapy, which is part of his legacy, was going to be pushed aside in favor of the same type of treatment offered at other top centers (e.g., Mayo, Dana Farber, etc.) I suspect that would be the cause of some internecine challenges.

The other factor is something that I noted in a blog post some time ago -- or perhaps it was correspondence with another patient -- that Dr. Morgan may be running the center, but it's Bart's name on the wall in the clinic and as long as his motorcycle is parked outside, his shadow looms large.  If everybody saw eye-to-eye, it would be one thing -- but if there were differences in approach, I can imagine that additional challenges would arise.  A senior lab technician receives calls from the two doctors with conflicting instructions -- who does this technician respond to first?  A patient develops a complication -- the two doctors disagree on how to treat the patient.  A clinician might be presented with two conflicting instructions...who prevails?   I'm sure things are resolved before they reach the "instruction stage" so to speak, but I can imagine tension could be created.

Importantly, all of that is supposition on my part, but I do know that Bart isn't necessarily riding off into the sunset.  But there are many questions that arise for me, personally.

If Bart *does* set up shop someplace else, will he be able to replicate the capabilities of UAMS (insofar as the things I need, most importantly MRD testing and the full battery of follow-on tests)?  Will it be covered by insurance?  How long will this take?  It seems unlikely that it will be in place by September, since his last date at UAMS is August 28th (his last day to see patients in June 30).  Should I try to be seen one more time before he leaves?  Would this even be possible?

If he sets up shop someplace else but it doesn't have the capabilities of UAMS, do I go to him?  Do I stay at UAMS?  Do I go someplace else, like Dr. Tricot?  The first and foremost interview question for any doctor for me would have to be "do you believe Total Therapy can cure standard risk Myeloma?" and if the doctor says "no" or "maybe in a few cases" I have to find a different doctor.  This is before I even get to whether or not the doctor has seen enough cases to know what he or she is doing -- and by cases, I mean people that have been treated with Total Therapy.  My complications, side-effects, and expectations in follow-up are different than patients not treated with Total Therapy (in fact, more specifically, Total Therapy 4 Lite) and require that I be seen by somebody with significant experience with those types of patients.  How many doctors would be keenly looking at residual non-avid focal lesions under MRI to see if they resolve?  (answer: not many)   I need a continuity in approach.

If he doesn't set up shop elsewhere, will any of his coterie of doctors remain at UAMS and continue to pursue the "Total Therapy can Cure" philosophy?  I've been on a panel with Dr. van Rhee before -- he is more a researcher than a clinician but he would be philosophically consistent.  Dr. Zangari has been in both Little Rock and at Huntsman with Tricot and presumably has the same philosophy, although I've not met him.  But would either of them stay at UAMS if the philosophy changes?

And then there are the logistical questions.  I can get my medical records (presumably) without any issue, but what happens to the 6 or 7 bags of stem cells I have on ice there?  Most centers don't care for stem cells the way UAMS does -- I was told my Dr. Lill at Cedars Sinai that they "didn't have room" to store bags of cells post transplant.  If I need another transplant in the future, I need those cells -- it will be hard to harvest now after all the meds I've got.  So hanging on to them is pretty damn important.  Would a new center be able to store them and care for them?  Could I keep them at UAMS if I decide to be treated elsewhere?

Then there's the issue of Bart's research -- the twenty five years of data tracking Total Therapy patients, and most specifically the 8 years of data tracking Total Therapy 4 patients.  I could sit with Bart and say "I want to see how many people had an over expressed MYC gene at presentation and were hyper diploid with 3 or more cytogenetic abnormalities under FISH and a low-risk gene are they doing" and he could pull up these people and show me how many remain in remission at a given point in time, and whether or not the curve for these patients appears to plateau (meaning no remission loss after a certain point).  If Bart moves, will he have access to that data?  If he doesn't, will UAMS still use it?

As you can see, this is not a simple situation.  I'm going to have to dedicate some serious consideration to what to do in the coming weeks.

All that said...I feel fine.  I believe that Bart's protocol worked on me.  And I want to see it through until even the most skeptical doctor has to admit that I don't need to fear a recurrence.  It was six years ago right now that I was going through my first transplant.  I achieved complete remission in September, 2009.  After ten years of continuous complete remission, most doctors would admit that I'm cured.  So that's 55 months and counting down...

I had hoped Bart would keep the wheels on the cart in Little Rock until after that point in time.  But we patients don't exist in a vacuum.  Doctors move on.  And in a disease as complex as this where there is no unified position on treatment, it can pose unique challenges for the patient community.

Regardless, only one way to go: onward!