Tuesday, May 5, 2015

Decisions, decisions!

I've heard from a growing number of people asking for my thoughts on the changing of the guard in Arkansas, and how to think about treatment.  So even though it's too early to call, I wanted to at least explain some of the thoughts I'm having on the subject.

It's pretty clear there are three options: (1) continue being seen by Dr. Barlogie wherever he ends up, (2) continue being seen at UAMS / MIRT, or (3) change to a new doctor.

Beyond that clarity, the issues become a lot more complicated.

As we parse through them, remember that in my case, I've been through Total Therapy and consequently I am best served if I am seen by somebody who understands the purpose of Total Therapy and agrees with its intent (that is, cure) and, further, I am best served if I am seen by somebody who has seen many patients that have gone through Total Therapy as the long-term follow-up for patients like myself is very different from the long-term follow-up for patients that have gone through different therapeutic regiments and/or with different intent.

As an example: recurrence in somebody treated less aggressively means the disease has popped its head back up and needs to be whacked down again with something else; recurrence in me means that I have a type of myeloma that is resistant to the entire arsenal that was used on me.  Another example: maintenance for a typical patient would likely be a relatively low-dose of Revlimid for a long period of time (some trials have it continuing indefinitely).  Maintenance for me, however, would likely not include Revlimid (as I have had three years of it and it has probably done whatever it is able to do against my disease) but might include some kind of immunotherapy -- which would be tough to start in most trials right now because I don't have any level of detectable disease so how could they monitor its progress?  A final example: at some point in the next couple of years, I will reach the point where I am at a higher risk of dying from secondary cancers brought on by the chemotherapy (e.g., leukemia) than I will be from the myeloma itself.  Somebody who has not gone through my therapy might not be monitored as aggressively for Myelodysplastic Syndrome (as an example) if the treating physician was not as familiar with this issue.

Now, I could of course be the one demanding that my doctor does X, Y and Z -- but that's an odd dynamic and one that is unlikely to be welcomed by many doctors, or by insurance companies.

With this in mind, some considerations regarding my three options, as I see them:

Staying with Dr. Barlogie.  It's easy to see why I would want to do this -- Bart has saved my life and given me a reasonable chance at being cured and dying in 35 years of something else versus already being dead.  He understand Total Therapy better than anyone (having invented it, after all) and has treated more people this way by far than anybody else in the world (hundreds of patients).

Some considerations, though:

1.  Part of what makes Dr. Barlogie so effective is that he has been a big fish in the UAMS pond.  He has the full resources of the facility behind him.  If the PET scan machines are booked for a week, he can make a call and get one opened up in a day.  If a bone marrow biopsy needs to be reviewed in less than a day, he can get that done.  Will Bart have these resources behind him where he goes next?  Will the center invest themselves in him as UAMS/MIRT has done?  Dr. Barlogie is not 45 years old...they are investing in a doctor who is in the last quarter of his working life.  Moreover, the center has to be large enough to have the infrastructure required to support what Dr. Barlogie would want to do.  And yet the center cannot already have a big Myeloma fish, so to speak -- at least not one that is counter to the Total Therapy philosophy (which means anyplace, really, other than Iowa).  Mayo, as an example, would not displace its program to embrace all that Dr. Barlogie would bring.

2.  Is Dr. Barlogie going to be able to take his patient data with him?  There is TREMENDOUS value in being able to see the sixteen (for sake of argument) people treated with Total Therapy 4 Lite who had the same genetic abnormalities that I did, and look at see how they are doing.  Without this data, Bart is still Bart -- but the data permits him to do some remarkable things both in terms of research for the future and in terms of longitudinal analysis of patient outcomes.  How many patients still have unresolved formerly active focal lesions?  How long does resolution take?  Have they lost remission? Good luck answering any of those questions without the patient data.  So can Dr. Barlogie take this data with him?  Have access to it?  Or neither?

Staying at UAMS without Dr. Barlogie.  Dr. Morgan is certainly a world-class Myeloma physician, so that's not the issue.  The biggest issue with this alternative -- assuming that UAMS will maintain some kind of access to the patient data I mentioned above, and assuming (which seems likely) that MIRT will still have significant influence in the overall UAMS ecosystem -- is that there may or may not be doctors remaining who have significant experience in treating people with Total Therapy.  If Dr. Barlogie leaves on his own and the other doctors stay, I could be seen by (as one example) Dr. Van Rhee -- he's a brilliant researcher and certainly has seen his share of Total Therapy patients.  But what if he and/or other doctors leave, either to join Bart or simply on their own -- whether its their decision or whether Dr. Morgan wants to change things over more comprehensively?  This is an open question.  As I mentioned, I'll hopefully have the opportunity to chat with Dr. Morgan during my upcoming visit to Arkansas next month and will get his full perspective on my case and, more generally, his approach to follow-up with Total Therapy patients.

Moving to another Total Therapy Doctor.  There aren't many.  But Dr. Tricot in Iowa was a senior member of Bart's team before setting out on his own first at Huntsman in Salt Lake and now in Iowa City.  He likely has similar institutional backing as Dr. Barlogie enjoyed at MIRT, and he's probably treated as many or more people with Total Therapy-like regimens as anybody practicing, other than Bart himself.  He's been very kind to lend his perspective to my case over the years at a couple of critical junctures, I have fellow patients who speak very highly of him, and I've observed in him the same kind of passion that I see in Bart.  This is a great third option -- although Iowa City is the answer to the Jeopardy question: "What location is even less convenient to get to from Los Angeles than Little Rock?"

And there's of course the issue of insurance -- none of this is free, and my insurance company needs to either already cover the center where I might choose to go, or accept that it is a center of excellence...which could be hard to do if it is not established (as could be the case, for example, if Bart went someplace without a Myeloma program).  So this is another wrinkle that will need to be navigated, if I may be permitted a mixed metaphor.

So as you can see, dear readers, there's a lot upon which to ruminate.  Fortunately, I don't need to make an opinion right now.  I've got some stressors in my life that I need to try to manage so that this stupid beast stays good and dead (I think stress is what helped bring it on in the first place, along with Aspartame from too many Diet Cokes) so making a final determination on the matter of where to be seen can wait for a couple of months.  I will make it to UAMS one more time next month, as noted, before Bart stops seeing patients there.  I've no doubt I will learn a lot more about the options above, and while I will of course be honor-bound to respect confidentiality, professionalism and apolitical neutrality, I'll post what I can here as it becomes available and relevant.

Meanwhile, hopefully those of you emailing me for my thoughts can find the above to be helpful!


  1. Nick, you are so cogent in your ruminations... and this is the challenge for any MM patient who has established a successful relationship with either a specific doctor or medical team at a facility they trust/know to be useful.

    My SIL, who was diagnosed around the same time you were, is joyful about finally getting off ALL medications - even/especially pain - and continuing to hold steady with his low numbers, working through Fred Hutch/SCCA here in the Seattle area.

    I have looked to you for education and understanding about this disease and you have never disappointed. I will hold the intention that when the time comes for you to activate Decision-Making that it all goes easily, smoothly and that you are divinely connected to the right team to continue your successful outcome.

    Thanks for being there...

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