Monday, February 10, 2014

Why I love my doctor...

Here it comes: an end to the initials of those involved with Arkansas.

There are going to be three posts from me today, I think, broken up for easier digestion.  Each is related, but each also has its own little piece of the message.

The first is a bit about why I love Dr. (B)art (B)arlogie and his team.

In the interest of not putting off people that chose a different therapeutic path, I've generally backed off any kind of zealous proselytization of Total Therapy in the past few years, however for these next few posts I'm going to be a bit more assertive.

Some people that have disparaged Arkansas refer to adherents of its program as "cult members" because of the faith that we place in Total Therapy and/or the larger-than-life personality of Dr. Barlogie.  One of the most vocal online denigrators of this dynamic has actually become a valued friend  of mine -- and though I respect this person and acknowledge that this person's individual disease characteristics make Total Therapy much less appealing for them than for others, I nevertheless must disagree with this person about the "cult" commentary and about this person's overall opinion of Barlogie.

Those who are passionate about UAMS, Barlogie and Total Therapy are thus because (1) we believe it works and that a meaningful proportion (call it 50%) of newly diagnosed patients can be cured of this disease through this protocol, (2) our doctor ENCOURAGES patients to become educated about their disease, their therapy, their biology, etc. and (3) we are passionate just as our doctor is passionate.  If we strongly encourage a newly diagnosed person to learn about the Arkansas program, it's because we believe there is a better way than just saying "well, the disease can't be cured, it will always come back and I'm eventually going to die from it unless a cure is found."  I realize that's a little like an Evangelical Christian wanting to force the "Good News" on others in order to save their soul...but even the most spiritually minded among us have to recognize that our mortal life is a bit more tangible than our soul.  Extending our life is knowable and measurable.

I will address the issues of curability and being an informed patient in my next post, but I want to talk about my doctor's passion and knowledge here.

I have developed a privileged relationship with Dr. Barlogie, his wonderful wife Kathy, his awesome son Bart Jr., and his amazing chief of staff Bonnie Jenkins over the years.  When I go back to Arkansas for regular visits, I usually try to get together with as many of them as possible for a drink or dinner.  Often, one or more of them is traveling or (particularly in the case of Dr. Barlogie) too busy.  But this last week, I was very fortunate.  I had dinner with Bart Sr., Kathy and Bonnie three nights in a row, and Bart Jr. was able to join for two of them.

On the first night, Bart was at the clinic until after 9PM.  It was another routine 12+ hour day for him and it would continue after dinner.  He was late because he was personally editing FIFTEEN articles that were about to be submitted to ASCO (the American Society of Clinical Oncology) for potential publication.  Dr. Barlogie is approaching 70 years old, but still sees between 15-25 patients a day including around 20 new patients a week.  His dedication is tireless.

I often speak of the need for people to see a specialist.  Virtually all of Dr. Barlogie's patients have Myeloma (a few may have related diseases like Waldenstrom's Macroglobulinemia or the like) and this has been the case for 30 years.  He has likely seen more Myeloma than any practicing physician in the world.

Because of this, he knows the disease as well or better than any practicing Myeloma physician in the world.  And that takes nothing away from the many learned physicians including a dozen or so absolutely brilliant specialists (this is my estimation only) who I am sure Dr. Barlogie fully considers his peers.  He may not be smarter than other top doctors -- though he certainly is brilliant -- but he's simply seen more of the disease.  If your car is mangled in a wreck, do you take it to a brilliant mechanic who has worked on 500 cars, or a brilliant mechanic who has worked on 5,000 of the same make and model?

I spoke with Dr. Barlogie at dinner this first night for two hours about the disease: why he believes it responds the way it does to some kinds of therapies and not others; why he feels the new classes of immunotherapy agents (e.g., elotuzimab, daritumimab -- both of which are receiving a lot of press now) are not ready for prime time and not as effective for Myeloma as similar agents are for lymphoma; why he feels the disease is curable.  And why he believes Total Therapy works.  As he ultimately put it to me:
"I was counseling one of our new doctors.  He had seen a patient and based on his previous training, had suggested a course of action that involved a few well known drugs in small doses, but not the newest drugs, and not a widespread group of drugs that would attack all pathways.  He said to me that he was saving the best for recurrence.  I told him you don't get it, son...we use the best we have NOW, so that there will BE no recurrence."
This falls somewhere between philosophy and treatment reality.  But Bart knows too much about why things work and do not work for this to be written off as a stab in the dark.   I have too many friends with Myeloma who went for non-aggressive approaches and are now relapsing and having dire outcomes.  I have seen too many friends with doctors that are supposed specialists guessing at what to do next, disagreeing with other doctors and with patients, and not having any real plan other than picking some agents that might work and throwing it at the disease and hoping it sticks.  Having a doctor that has a plan, can articulate it, and knows why it works and when it doesn't is a HUGE asset as a patient.

This is not to say that Total Therapy works for everybody.  It does not.  As I have always noted, 15-20% of patients  have high risk characteristics -- or, if you prefer, have a biology which Arkansas' Gene Array test indicates will not be cured by Total Therapy.   Then, of the remaining 80-85%, only about 80% or so are likely to be cured according to UAMS.  However, those are compelling statistics for a supposedly "incurable" disease.  Even if they are off by a factor of two, it's still 30% of low-risk patients being cured.

Included in the 20% that Arkansas recognizes will not be cured by TT despite low-risk biology are those who have standard risk disease (or, if one prefers, disease which has attributes that, according to Arkansas' Gene Array test, are likely to respond well to Total Therapy) but who lose remission.  These are sad cases, because often times the disease returns with very aggressive characteristics and prognosis is not good.

One such case is a friend of mine, and I was discussing this person with Dr. Barlogie over dinner (within the confines of patient confidentiality as appropriate).  Where other doctors would say "well, we could try X, or Y" Dr. Barlogie shared with me that he had researched additional therapies that work on a specific cellular level since this patient didn't have trouble reaching remission, but had difficulty remaining on therapy due to his blood counts (white cells and platelets) being knocked out by the therapy.  So Barlogie's new therapeutic choice for this individual was to select chemo agents that work at a stem cell level and don't damage mature cells, so that the counts would not be as impacted.  Barlogie not only knows what to do, he knows WHY he is doing it.

When he sees a patient that has been heavily treated elsewhere -- and I have personally referred patients from Los Angeles to Canada who were told by their supposed experts that they would be dead in three months only to be given a new lease on life in Arkansas -- Barlogie knows what the options are and why.  This can include experimentation, particularly in those that have received all the common treatments before.  But when one can either update one's will and sign up for hospice, or sign up for experimentation and live 18 months to who knows how long, that's a meaningful choice to have, even for those who choose the first path.

As another example, because he has seen so many patients, Barlogie knows that certain procedures ENCOURAGE plasma cells and Myeloma.  In patients that are not in remission, something as simple as removing a central line (a catheter placed subcutaneously for infusions, and which requires an incision) can sometimes cause the eruption of plasmacytomas at the incision site.  Patients with serious disease might even experience this at the site of simple injections.  Doctors that haven't seen thousands of patients and haven't observed this phenomenon dozens if not hundreds of times simply won't know this is happening.

Similarly, I have friends that receive radiation.  Radiation can possibly cause the same thing -- plasma cells rush to the area that experiences the radiation.  This could strengthen the Myeloma over the long haul.  This is why my doctor favors "melting tumors" with chemotherapy.  A doctor that hasn't seen this many times over might be quick to radiate something that won't help the situation.

Now, some of this is theory -- and some of it is likely the age-old difference between chemotherapists and radiologists whom, I am told, haven't always gotten along well (this is not specific at all to UAMS, where the departments work well together).  But a lot of this is experience.  Experience that few doctors in the world have.

Over the course of the next two nights, I had other conversations with Bart, his family, and Bonnie.  About the disease, about what we learn from going through it, about their own lives and families as well as my own.  Bart and his family become profoundly emotionally involved in the outcome of Bart's patients.  Some may say this is a bad thing -- they prefer a doctor that is detached and unemotional.  I can understand that -- but there's also something about having a specialist being emotionally invested in one's case and wanting that person to beat the disease.  Not to qualify for more funding, not to validate or invalidate a particular drug's efficacy -- but because Bart hates this disease and loves his patients.

That is not a cult.  That is a family of care.

I've seen an unfortunate few of those in Bart's care -- both newly diagnosed who arrive full of hope, and those who have been treated elsewhere that aren't able to hope for a cure through Total Therapy because being pre-treated means the TT approach isn't as effective -- die.  These people are not bitter.  Uniformly, they are at peace.  Because they know that they have been seen by the best and there could not have been a better outcome.  That, too, is not a cult.  That is the result of a dignified grace conferred at least in part by confidence in one's medical team.  I am not certain I would experience such grace in the face of imminent mortality.  I hope I never need to find out.  The UAMS people don't sugar-coat things...Bonnie once told me "I can help you beat this disease, but should the time come, I can also help you prepare to die from it."  That's both awful and pretty remarkable at the same time.

I have a privileged relationship with Bart and his family, as I've said in the past and said earlier in this article.  He doesn't visit everybody in the hospital, as he did with me (and did with my friend who experienced relapse, whom I mentioned above).  Kathy, who doesn't even work at UAMS, doesn't visit everybody in the hospital either -- yet I remember when I was basically in a coma from Dilaudid, I opened my eyes once to see her sitting there holding the hand of my terrified wife.    Yet this privileged relationship didn't come from anything special and isn't unique to me.  I reciprocate and invest in it, because it's good for my care clinically but mostly because I love these people.  This privileged relationship arises for me and others BECAUSE of the commitment that Bart and his team give to their patients.

If that collectively means I'm part of a cult, then sign me up.  So long as it doesn't involve purple jumpsuits or Kool-Aid.  :)

As to curability and why it matters, that's coming up next.

P.S.  As part of being in the cult, I provide free advertising for associated businesses.  :)    If you are in Little Rock, make sure to check out The Fold, which is Bart Jr'.s restaurant featuring farm-to-table, high-end tacos and other small plates.  Calling them tacos is a bit of an understatement.  It's a very relaxed, reasonably priced and cool place with a wide variety of good eats.  I've now put it in my rotation along with certain BBQ and pizza places when I go my weeks in Little Rock.

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