A long over-due mini-update!

Hello friends.  Sorry to fall off the face of the earth there for a bit.  I have some good excuses -- I've been helping to launch a new business for my employer,  I've finished work on my bands next album, and of course I have my adorable family with whom I try to spend a little bit of time.  Oh, and I also play a fair amount of golf.  Poorly.

Not to bury the lede [sic], recent bloodwork (last week) shows that I remain squeaky clean.  So that's good!

I will post something more detailed on my decision as to where to be treated in the coming weeks, but as of now I think I'm going to return to UAMS per schedule, but go to Mt. Sinai in NYC in January as a second opinion at this stage in my treatment so that I can get the perspective of Dr. Barlogie and see his new location.  I don't think it's possible for me to choose one or the other until I see the center in New York and assess the degree to which BB can continue to monitor and treat me in the manner that he did at UAMS.  Meanwhile, I do have a tremendous sense of continuity with his former colleagues in Little Rock to consider.

It's a high class problem, seven years after diagnosis, to be around mulling this over!

I've been traveling a lot for work and I'm not sure if I'll have time to update before I get all my appointments scheduled, but that should happen before the end of the year (it certainly BETTER as I'm planning to see them both in January) and I will update again at that time, or earlier if events merit.

Happy holidays in advance to all of you!

Dr. Barlogie's new digs

Hello friends.  Sorry to be radio silent for a bit -- have been fighting other fires.

I will be posting my thoughts on my own decisions and next steps in a couple of days; I wanted to keep the focus on this post on Dr. Barlogie's upcoming move.

It has been rumored and discussed elsewhere, and I mentioned it here last month, but now I have been asked to formally note that Dr. Barlogie will be joining the staff of Dr. Jagannath at Mt. Sinai in New York, where he will start to see patients in September.

Bart will be bringing along a fair number of his patients with him.  He is excited to be reunited with Dr. J, with whom he worked at both MD Anderson and UAMS.  However, this is Dr. J's show -- Dr. B will be taking a less central role than the one he has had at MIRT.  He seems comfortable with this, which is important -- he has very little if anything to prove clinically at this point; his motivation to continue practicing is based primarily on his commitment to his patients and his desire to eradicate this disease, but is of course influenced by his comfort with a new role, environment and culture.

He and I discussed how Mt. Sinai, which already has an impressive team, is dedicated to building a world-leading research capability in Myeloma.  It sounds like a good place for Bart to be heading for that reason alone, leaving aside his long relationship and mutual respect with Dr. Jagannath.

As his friend, I am happy to see him land someplace where he can continue his work.  As his patient, the two key questions remain for me: (1) how much institutional support will he have from Mt. Sinai -- not just for research but for clinical activity (e.g., if I need a PET scan on a few hours' notice, will that happen?); and (2) will Bart have access to trial data including not just his current patients but all work done in the TT program.  The answers to these questions will help inform my future treatment decisions; I'm not sure the answers can be had prior to Bart's arrival in New York.

More to come on my own situation in the next few days, but in the meantime, I awake every day, conscious that I'd be in pretty dire straits -- assuming I was even still alive -- had I not been treated by Bart.  Eight years ago I had no idea, but MM was already hard at work, damaging my bones.  Seven years and 9 months ago, I was diagnosed.  Today, I'm in stringent complete remission and am MRD negative -- as good as I could possibly have hoped for.  So here's to Bart, basically -- to a new chapter and a continued record of clinical and personal success!

A frustrating, painful and expensive waste of time

Well, the good news, I suppose, is that with the help of that lidocaine creme and a very skilled nurse my port was accessed this morning.

The long and the short of it is the bone marrow biopsy hurts a lot more than usual, and the FNAs didn't get scheduled.  It's maddening.  It's not like I didn't tell the schedulers for weeks in advance that this needed to happen.  I sent meticulous email after meticulous email.

I had dinner with Dr. Barlogie and his right arm BJ last night and she tried valiantly to move things around last minute but to no avail.  Everything is booked.

The MRI is completely unchanged from before.  No resolution of remaining lesions.  And now, no way to get at what's inside them.

I came out here for absolutely nothing other than a conversation I could have had on the phone with Drs. Barlogie and Morgan (both occurring tomorrow).

It's infuriating, actually.  And the fact that I'm in pain and the damn MRI is unchanged isn't improving my mood any.

It's not a well kept secret at this point but as I didn't want to blog about it until I had been given approval to do so, Dr. Barlogie is indeed moving to Mt. Sinai Medical Center in Manhattan in the next couple of months, where he will join the staff of Dr. Sundar Jagannath, with whom he worked thirty years ago at MD Anderson before Dr. Barlogie left there to start MIRT here at UAMS, with Dr. Jagannath joining him.  I'll post more about this when I'm not so tired, in pain and angry.

Frustrations continue -- a partially wasted trip

So I never was able to get the port accessed today.  I did meet with a great guy who I'm going to call out here (sorta) -- one of the physicians assistants, JA, who has been a fixture here over the last several years and is an extremely kind and attentive man.  He oversees my case so today I explained the port access issue and he managed to prescribe a numbing cream and we'll try again in the morning.

Meanwhile, though, ALL the work I did to line up a very meticulous series of tests was evidently ignored.  We know we are looking for the lesions in my spine to resolve.  The last time I was here we determined that if they hadn't resolved yet, they would stick needles in my spine to pull bone marrow out of the spots and assess what's inside them.  This, as well as meeting with Drs. Barlogie and Morgan to help determine where I show up in a few months, was the point of my visit at this time.

I explained this to two scheduling nurses plus other people in the administration along the way as we scheduled my visit many weeks ago.  I probably communicated this to five people.

Instead, we have MRI only.  No time to get any other imaging required, no time to assess the MRI before acting, no bone marrow work besides the standard biopsy.

In other words, a wasted trip.  If the lesions are healed, great -- I'll celebrate.  Got some very good wine that I've been saving for such an event.  If the lesions are not, however, then all we've done is kicked the can down the road, and these tests (and the trips themselves, by the way -- airfare and hotels are not free) are not cheap.  I could have gotten an MRI on the spine around the block from my house (metaphorically speaking).  I didn't need to fly across the country for it.

GRRRRR!!!!!

When I sat back down in the clinic this afternoon, the blood pressure was even higher than it was this morning.  JA kindly offered me something for it.  I declined, but if things don't go more smoothly tomorrow I may accept.  I don't want to die of a conniption fit whilst trying to beat cancer.

Nicolas and the No Good Very Bad Day

Well, after a long day of travel yesterday I'm in Little Rock.  It's been a pretty lousy morning.

For a number of reasons I'm under a lot of stress right now.  So the hit parade began with a blood pressure reading of 148/110.  That's a new personal best.  Not in the right direction.

On the other hand, I was on time for my appointments -- always important but particularly important today as there is a lot back-to-back.

I got to the infusion clinic, my smiling and cheery self.  A nice nurse introduced herself.  I had requested some additional tests be run (immunization titres, the full cholesterol panel, etc.) and this had to be double-checked but we got that under control after a little investigation.

The lady tried to access my port, twice.  The first time was vey painful.  The second time was even more very painful.  She couldn't draw blood.  She capitulated and found a second nurse.

The second nursed confidently jabbed me.  The needle went in.  It hurt a lot.  They were unable to draw blood.  They put heparin in, and it went in, but nothing came out.  They tried again, nothing.  They then ordered another drug (Activase? could that have been it?) and I waited while that arrived.  It got there.  They adminsitered it.  We waited the requisite 20 minutes.  They tried to draw blood.  Nothing.

I'm getting pretty irritated by this point.  I went to go to my next appointment and told the nurses I would have to come back later. 

I got to the next appointment and they couldn't find me.  It's just as well, because I'd been kept so long that I was over an hour late.  In fact, I was late for the appointment AFTER the appointment.  So I went to that appointment.  The line to check in was enormous.  And the MRI was looming in 30 minutes.  So I left.  I don't need a pulmonary test right now.  I am mindful, dear readers, that I'm only here now (versus September) because Dr. Barlogie is departing and I wanted to see him one more time and also talk with his successor as the head of the instititue here, Dr. Morgan, to determine where I would be treated.

With 30 minutes remaning before the MRI and nothing to do, I went back to the infusion clinic.  A new nurse determined (based on redness and swelling) that the needle had been inserted incorrectly and the heparin and whatever else had been pushed into the surrounding tissue rather than the blood.  That would explain the pain and swelling.

I am at this point pissed off.  I hurt, my blood pressure is through the bloody roof, I've missed two appointments and I'm no closer to having any labs done than I was before I showed up.  Well I peed in a cup so maybe they can get some value out of that but otherwise this whole morning has been a waste of time.  Worse, because a simple waste of time doesn't involve the pain I'm in.

I'm not going to allow them to access the point again unless they numb the area.  There's a simple freezing spray that everybody else in the world can figure out how to get a hold of, they can damn well get a hold of it here.  I see a physician's assistant at 1PM on the other side of the MRI tests, and he can damn well prescribe this freezing spray for me or I am cancelling the whole battery of tests and getting on a flight tomorrow wihtout doing anything more than the MRI.

Screw this.  I don't need it in my life right now.

Relapses in Total Therapy give me the willies

With my return trip to Little Rock coming up in three weeks, I've been thinking a lot about what to do and upon the continued need for follow-up.  And I've heard this week from two people in my cohort (Total Therapy 4 Lite with standard/low risk disease) who had sustained remissions of several years and recently lost them.

This is not good news, obviously.

In both cases, the patients had unresolved formerly active lesions in their spines which were the only things that troubled Barlogie.  Both had tested negative for MRD in bone marrow, which speaks to the fallibility of that test.  MM is patchy in the marrow -- what's clean in one place isn't clean in another.

So I want those lesions to go away, basically.  I'm trying to work the logistics so that my lesions (if they are still there) can be punctured with needles to assess the marrow in those particular spots.  Not sure if they are accessible or not.

Continued resolution would be a good sign, but I'm afraid until they are all gone I won't be able to rest easy.  One of the patients who just lost remission had only a single remaining non-active lesion, clean blood and marrow for five years...and is now being treated with Carfilzomib.

The projected cure fraction from Total Therapy 3 -- which is essentially the *heavy* version of Total Therapy 4 -- has been adjusted down to 50%.  That probably means about 60% of low risk patients.  I will be a lower figure than that for Total Therapy 4.  50 percent?  40 percent?  30 percent?

I have to hope I'm one of the lucky ones.

This means that ongoing imaging studies are of vital importance to this disease.  As a patient, demand them.

A quick update from MIRT/UAMS

I received a letter today co-authored by Drs. Morgan and Barlogie that affirmed Bart is going to continue practicing elsewhere.  This is notable only insofar as it reframes the previous communique from Arkansas.

As I said, there are politics involved here that I want no part of.  All the complexities of my upcoming decision remain relevant.  More to come as events merit!

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!

...and another update about the transition.

I received a very nice note from Dr. Morgan yesterday, affirming that he will continue Total Therapy and does believe Total Therapy cures standard-risk patients.  That's good news for me, for the hundreds of patients treated with Total Therapy, and for newly diagnosed and yet-to-be-diagnosed low-risk patients everywhere.

I am in the process of scheduling what will be my last follow-up with Dr. Barlogie in Little Rock, and will hopefully have the opportunity to also visit with Dr. Morgan while I am there to get his perspective on my case.  Obviously, I have no interest in getting involved in any politics -- Bart is my friend, and I'm mindful that I owe him my life...and I am also mindful that I have to do whatever best serves its longevity at this juncture.  :)

It's said there are no atheists in a foxhole -- I suspect nobody who finds him or herself in such a place is terribly concerned with office politics, either.

Separately, I also had the opportunity to look online at the specifics of my MRI.  It seems there are *seven* unresolved lesions in my thoracic spine.  Specifically, here's what the MRI says, and what we're hoping will resolve.

2. MULTIPLE SCATTERED FOCAL LESIONS WHICH ARE NOT EXPANSILE INVOLVINGTHE THORACIC VERTEBRAL BODIES AT T2-T5, T9, T10 AND T12. THESE LESIONSMEASURE BETWEEN 1-2 CM WITHOUT CANAL OR CORD COMPRESSION. NO EXTRASPINAL LOCATION OF THESE LESIONS ARE SEEN. THESE FINDINGS REMAINUNCHANGED WHEN COMPARED TO THE PREVIOUS STUDY.

Importantly, few doctors (including Total Therapy disciples) believe this necessarily means anything. Dr. Tricot and Dr. Zangari (both of whom worked with Bart, the latter of whom still does) stopped doing FNAs (fine needle aspirations) of these sites after they learned that in most cases the lesion was simply filled with blood. We'll see...I do know that another seven or so lesions, most of which were significantly larger, did fill in with healthy new bone so I'm continuing to give Bart the benefit of the doubt on this and look for that resolution.

Onward!

...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 array...how 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!

Update from Little Rock

A mostly good-to-very-good checkup.

Highlights:

* It is FREEZING in Little Rock in January.  I never remember that and always pack as though it's going to be in the 60s.  Well it was 19 degrees last week and got as low as 30 last night.  Chilly!

* I remain in stringent complete remission.  No M protein, all markers normal except for IgM which remains low and is recovering post-transplant.  More on this below.   Most importantly, bone marrow is negative for any minimal residual disease -- the most sensitive test, of course.  I believe (though I'll need to check) that makes four random marrow sites over the past 18 months that have tested MRD negative.  A good sign, to be sure.

* The pits in my spine have not resolved -- they are unchanged from my previous scan, and number five, all sub 1cm and in the thoracic vertebrae.  I am going back on Zometa every other month to see if we can spur resolution.  Should that fail, I can likely look forward to fine needle aspirations of as many of them as can be reached with the needle (this was an issue before -- they have to go deep, evidently), and those aspirates subjected to MRD assessment.  We shall see.

* Insurance has, for the first time, been a real issue.  They rejected all scans.  I paid out of pocket for the MRI of the T-spine (ouch, to the tune of $1500).  I would have liked to see a PET and other MRIs but for now, no dice.

* I have experienced an uptick in Lambda free light chains -- they are still well within normal ranges but have increased steadily over the past year.  BB confirmed that this is likely just a sign of my immune system recovering.  Still, as FLCs increase before M protein does, it was one of those "this is probably nothing...BUT..." moments.  All that said, negative MRD trumps everything.

* I asked BB a number of questions.  Among them:  (1) Confirm that I did have cytogenetic abnormalities so that I can read the data to parse for my biology (yes, I did); (2) has my gene array returned to what looks like a patient without any MM whatsoever (work in progress); (3) is there a plateau among TT4 lite (too early to say but numbers do not appear to be plummeting, which I was worried about initially -- and in fact among those with my "subtype" (proliferation) there does appear to be a plateau; (4) should I get any other tests, like a heavy lite assay, to assess my condition or the depth of my remission (no); (5) are the rising LLCs cause for concern (likely just recovering immune system); (6) what should we make of the persistent former lesions in my spine ("why are those f*ckers still here?" he said as he looked at the MRI results...put me back on Zometa every other month, probably fins needle aspiration of remaining lesions in September to test specific marrow from those sites for MRD; (7) what is the plan for recurrence? ("I do not plan on recurrence."  me: "That's great, Bart, but I want to plan for recurrence."  BB:  "We would need to assess your biology at that time and look at whole genome sequencing and other analysis to inform our strategy at that time."

The upshot: steady as she goes, watchful and hopeful waiting, let's see if the Zometa makes those lesions disappear.

Does Do No Harm do harm? Food for thought.

Happy New year.  I recently joined an interesting call hosted by the MMRF for a few interested parties, where Dr. Lonial from Emory along with Dr. Daniel Auclairre of the MMRF spoke about the highlights from the ASH conference and took a few questions (some of which were from me).

One thing that struck me in hearing all these trials -- and in the philosophy of Dr. Lonial, who is quite an excellent doctor -- is that our entire medical system remains rooted in the concept of "First do no harm."  Incidentally, I was going to make a wisecrack about Hippocrates but it turns out this phrase originated not with the Hippocratic oath but with 19th century surgeon Thomas Inman.  Thank you, Wikipedia!

Anyhow, back to Myeloma.

A significant result of the "first do no harm" approach is that if you know treatment X is going to have more side effects than treatment Y, and you don't yet know if treatment X is going to be better than treatment Y, one is disinclined to pursue treatment X.  If you consider that the life-expectancy of a newly diagnosed patient is now 5+ years, that means that if we started today with a test of a lower side-effect therapy versus a higher side-effect therapy (Total Therapy qualifies, certainly) it would take much longer than 5 years before we knew enough to decide between the two types of treatments.  Conservatism will err on the the side of the treatment with fewer side effects.

This explains a lot, including the approach that Mayo and other conservative centers take with respect to treating the disease.

Interesting, at UAMS, this is turned somewhat on its head.  BB and Dr. GT, formerly at UAMS and then Huntsman and now in Iowa, have both told me on separate occasions that because they fervently believe that they approach cures a meaningful portion of patients while less aggressive approaches (to "standard risk" newly diagnosed disease) to not, that it would be a violation of medical ethics to put people into a trial that didn't offer then the same chance at a cure.  That "doing no harm" (in terms of not introducing side effects or any treatment related mortality whatsoever) in fact *does* do harm in the long run.

When you combine these two issues -- conservative centers that don't want to risk greater side effects with aggressive centers that believe it would be unethical to randomize into less effective trials -- it points out how challenging it will be to ever get a head-to-head trial to compare Total Therapy with something less aggressive.  And even if such a trial could be put together, it would take many years before results were known.

In other words: there will probably be a clear and definitive cure before there is a clear and definitive universal point of view on Total Therapy.   And until that time, patients will be required to do their own research, form their own opinion, and select a doctor whose philosophy and approach is compatible with their own belief set, comfort level, risk/reward preferences and other decision-making factors.

Some food for thought.