War correspondence and punch to the gut

In the wake of my revised thoughts on the curative potential of Total Therapy for a certain subset for patients, at the request of my friend and fellow blogger Pat Killingsworth, I let him cross-post my thoughts in his own blog to encourage a bit of healthy reflection.

"Healthy reflection" turned into a barrage of comments for and against Total Therapy, its medical creators and administrators, and (as always, surprisingly to me) its patients.   By the end of a three day back and forth, I was getting tired of taking it from all sides.  My doctor tortures patients.  My doctor runs a "house of horrors."  I have "drunk the kool aid."  Whatever.  All I know is I'm here, more than five years from diagnosis, in complete remission, and it's a good start no matter what comes next.

When I wrote my observations and adjusted them, I did so with the express intention of making the statement that "Total Therapy may cure people" LESS controversial.  After all, I qualified it very heavily.  Here's who it will NOT cure:  (1) people that have been heavily treated elsewhere, and (2) 15% or so percent of patients who have disease profile (you might call it "high risk" or if you are cynical you might call it "those who have biology that hasn't done well with Total Therapy in the past") for whom the therapy doesn't offer the promise of cure.   Then there are people that are sufficiently old that the difference in outcome between this and novel agents isn't worth the time or the financial, psychological and physical cost of the aggressive therapy.  Then there are the people who can't logistically pick stuff up and move to a center of excellence for the therapy, and those who aren't healthy enough to endure the treatments.   Who does this leave?  Young, otherwise healthy patients with standard-risk disease characteristics who haven't already been treated, and who can afford to take the time to move to Arkansas (or Iowa, etc.) for six months, give or take.   And those people have a better than 50/50 chance of being cured.

I had *thought* this would be relatively non-controversial, particularly as even those doctors who are reluctant to admit the disease is curable acknowledge that this "could" represent a cure for a meaningful portion of people thus treated, but we just don't know yet.

Boy was I wrong.

It's like mass hypnosis sets in.  I had three people tell me that Dr. Rajkumar said something during our Cure Talk panel on cure versus control about a "false plateau" in previous statistics for Total Therapy 2.  I listened back twice to be sure.  He didn't say anything of the sort.  In fact the only thing I've seen about a "false plateau" on Total Therapy was something *I WROTE* in questioning some statistics associated with Total Therapy 3, which have subsequently been updated.  So much for drinking the bloody Kool Aid.  I'm very circumspect about this stuff -- it doesn't serve me to pull the wool over my own eyes, for God's sake.  I'm trying to make analytically sound and well-reasoned decisions about my life or death!!

Ugh.

Anyhow, for whatever reason, Total Therapy remains a flashpoint for some patients.  I have a friend whom I respect a great deal who is adamantly opposed to it.  She is adamantly opposed to it for very sound reasons -- particularly with respect to her own biology as she is in the group that would not be likely to benefit from it.  And she believes that continued tinkering with families of agents that are highly toxic but haven't been proven to work is tantamount to banging one's head against a brick wall…which would be fine except it's the patient's head that gets bloodied.  So I *get* her objections.  It's the denial of objective statistics, deep objections to quality of life from patients who haven't undergone any of the therapy, and ultimately the borderline Godwinism with respect to BB and his methods that don't make sense to me.

One person said that I didn't need to be BB's online advocate and that he's a big boy.  I wrote that yes, indeed, he is a big boy, having done (in the words of Rajkumar) "more for Myeloma than all other Myeloma specialists put together."  BB's legacy is secure -- he doesn't need my online advocacy for Total Therapy.  Newly diagnosed patients are the ones that need my online advocacy for Total Therapy, so that they can investigate it, determine whether or not they think it is right for them, and evaluate it relative to other treatment options that they have.

It is mind-boggling to me (sorry if I already used that phrase but I'm not going back to check at this point…I'm on a roll like D-Day in Animal House right now and the fingers are flurrying across the keyboard) that some patients have such an adamant opinion about a therapy that they didn't choose that they will not only encourage others not to do it (which is of course their right and frankly something they SHOULD be doing if they truly feel it's a bad choice) but piss on those who HAVE chosen it already.

Okay, enough.  I've vented.  : )    At some point soon, Pat is going to give me his thoughts on why some patients have formed this perspective, and I will be very interested to get his ideas on this.  If they are appropriate, perhaps they'll find their way to a post here.

And now, some truth in advertising from this non-kool-aid-drinker-objective-patient-who-went-through-Total-Therapy.

When I was first diagnosed, I looked around the Internet for other people with the disease to learn how they were doing, what treatment choices they had made, etc.  It was this experience (quite depressing, since so much seemed to be about how awful and irrevocably life-changing treatment would be) that inspired me, in part, to keep this blog going beyond the simple daily updates for friends and family during the most active portion of my treatment.

There were two positive voices that I found.  One was a man named DC with whom I still interact.  He was treated by Dr. GT in a regimen quite similar to BB's and he is doing great these days some 8 years later, I think.   The other was a woman named Lois Bertoni.  I mention her name rather than her initials out of respect for her.

Lois had been treated by BB a little more than three years before I met her.  She was in complete remission, although she had to terminate the Total Therapy protocol early (if I recall correctly, she had only one transplant and no consolidation or maintenance) because she had Lupus and had difficulty tolerating the treatment.  She'd had only two cycles of VDT-PACE and one transplant.  No Revlimid because her immune system couldn't handle it due to her Lupus.  Still, she (and even BB, truth be told) seemed confident she had licked it.   One time during a follow up visit that coincided with one of my own, I took her and her husband out to a nice dinner.  Delightful people.  I last exchanged emails with her in March of 2011 and she was doing great.

The day before yesterday I was reading a blog entry elsewhere that talked about a treatment called SUPERBEAM.  This is a nasty collection of alkalyting agents that BB and UAMS use (others as well, I'm sure) for those who have already been transplanted or heavily pre-treated (a corollary of which is that they now have disease in a state that can't be cured).  I saw somebody (possibly Pat) write that this meant four agents representing the BEAM part, but it seemed to me that UAMS uses more than just four agents.  I'm not scared by M-VDT-PACE and SUPERBEAM even worried ME.  I remember one friend who has since succumbed to the disease told me they brought one of the agents out in a glass bottle for the IV because it would eat through plastic.   Anyhow, I was researching SUPERBEAM when I found an online entry from Lois.

It was dated just a couple of months after our last email exchange.

Her disease had returned.

And as it can, both with Total Therapy and other treatments, it returned in a high risk form that didn't show up in blood, only on PET scans or in bone marrow.  She went in for aggressive treatment that included SUPERBEAM and metronomic chemo called MED-PAC.  Two years later, in the fall of 2013, she passed away.  I learned because in expanding my online search for continued updates from her, I found her obituary.

A punch to the gut.

A reminder that, as Dr. GT told me, "nobody -- not even Bart -- can tell you when you've been cured."

I have statistics.  I have exponentially more sensitive tests that thankfully have come back consistently negative.  And I have confidence in my doctor.

Confidence, but not certainty.  Never certainty.

And so the search for a definitive cure goes on.

Rest in peace, Lois.  And thank you for your guidance.