Gunga Din vs. Carl the Greenskeeper, VGPR vs. CR and other errata...

Thank you for all the responses to my previous blog! I'm especially tickled that my Eduardo Gianelli references prompted my big brother to respond!

My knowledge of Gunga Din (including, evidently, the titular character's proper spelling / capitalization) pales in comparison to his. But as a child of the 1980s and a golf hacker, my knowledge of Caddyshack, including Carl the Greenskeeper's many soliloquies, is not to be trifled with.

From memory, the Dalai Lama speech:

CARL: So I make my way over to Hong Hong, and I jump ship over to Tibet. And I get there, and I sign on as a jock.

AWED ASSSITANT: A jock? You mean a caddy?

CARL: (of course, stupid, learn the lingo) Yeah, a jock. A caddy. You know, a pro jock. Anyways I tell 'em I'm a pro jock, and who do you think they send me out with? The Dalai Lama himself. Twelfth son of the Lama, the flowing robes, the baldness....striking. So we tee off, and the Lama WHACKS one -- big hitter, the Lama -- into the base of a 9,000 foot crevasse. And he looks at me...and do you know what he says? Gungada...Gunga la Gunga. Gunga la Gunga. So we finish 18, and the Lama's gonna stiff me!! So I say...HEY....LAMA (he is now prodding the listener with a pitchfork for emphasis)...HOWSABOUT A LITTLE SOMETHING, YOU KNOW, FOR THE EFFORT!!! And he looks at me and he says...oh there won't be any money. But when you die...ON YOUR DEATHBED...you will receive Total Consciousness. So I got THAT going for me....which is nice.

Thank you folks, thank you.

Okay, my dear friend Dr. Bill, not sure if you were striving for perfect verisimilitude in your citation of Rick Derringer's lyrics, but if you were you should of course know they are "Rock and roll, hootchie coo, lordie mamma light my fuse." A less impressive slice of 1970s ouevre than the early days of Saturday Night Live, but important knowledge nonetheless.

Lori Puente, I did in fact meet Jan and Bruce in the infusion center yesterday (they were kind enough to stop by and introduce themselves) and we had a very nice conversation. They both say hello; Bruce looks to be in good health and spirits and we hope to grab a glass of wine with them next week. Jill and I also had a nice lunch with fellow travelers PB and CB, who it turns out at one point consulted CS, whose wife was successfully treated here eight years ago under Total Therapy 2, and who was one of the people to whom I spoke (through a completely separate set of connections) back in February. It's a small world, as my employer is fond of saying!

The night before last, when we were out to dinner with BB's assistant BJ, BB drove by on his Ducati and saw BJ's car and stopped in. We wound up eating with him and having some wine and spending three plus hours together talking about everything from politics to cars to MM treatment to my daughter's vision challenges (she has a congenital defect in her eyes called Cone Dystrophy that is a pretty nasty thing) to his very funny wit and the nature of the prickly but undeniably successful professional relationship that he and BJ have had for twenty years. Some highlights as it pertains to my treatment:

* Finally got them to opine on the likelihood of all my hair falling out from consolidation. If pressed, 30% chance it falls out. So no point in shaving the head bald right now unless I like the look.

* Where does the M-protein come from if the marrow is clean? No certainty, some of it from residual plasma cells in the blood, some of it from undetected cells in the marrow.

* BB pointed out that in cases of smoldering myeloma, where one could have a very low M-spike (under 1, say) for years that would go undetected (certainly my primary physician would never have noticed anything wrong with total protein and wouldn't have ordered a second blood panel) CR might not be achieved. It might revert to a smoldering state.

That is not satisfactory to me. And this bridges the topic from correcting pop culture references to addressing some very important observations by some of my fellow travelers in yesterday's comments fields.

First, my bias: at the 50,000 foot level, MM physicians have one of two philosophies: eradicate the disease, or control the disease.

I do NOT believe, at this point in my life, in controlling this disease in a stable state. With my M-spike where it was and my marrow where it was upon diagnosis, trying to contain this beast with dietary supplements or anything short of proven western medicine was not an option for me, and I do not hesitate in this decision one iota. I have sought, from the moment of diagnosis, the closest thing to a complete cure. BB's data shows a cure rate on the order of 60%+ for all patients (including high risk) and over 80% for low-risk patients -- and these are conservative figures as they include mortality from non-disease causes.

This was no sleeping dog. This was an angry, vicious, rabid dog about to tear me apart. And I wasn't going to calm it back down to sleep through anything less than full-out assault by Western Medicine. Moreover, I don't want to simply transform it from a biting Pit Bull to a Chihuahua nipping at my heels. I want no dog anywhere near me.

BB has more than theories or test-tube results. He has hundreds of patients who have gone through the exact same therapeutic regimen. So when I say that achieving CC has a different result than achieving VGPR, this is based on precise data. In this case, of 214 patients with at least five years under TT3 (recall that at year six, if the cancer is gone, the likelihood of recurrence is extremely low):

- of 138 who, three years after enrollment in therapy, were still in CR, 138 were still alive five years after enrollment
- of 62 who failed to achieve CR, 9 died within the fourth year, and another 3 died within the fifth year -- 20% have died
- of 4 who achieved and lost CR, one died within the fourth year, and one within the fifth year

The first three years are excluded to ensure it includes only people who completed the three year total therapy program.

This is not a qualitative "what if" difference. This is stark. For those who fell short of CR -- including very specifically near-CR (one step above where I am) and VGPR -- there is a material difference in survival. Bear in mind, too, this is simply "overall survival." Not the true gold standard of "event free survival" -- since by definition anybody not in CR is living with an "event." IT TAKES SIX YEARS OF EVENT FREE SURVIVAL TO BE CONFIDENT THAT ONE IS CURED.

In the infusion center yesterday, I sat across from a woman who underwent a tandem transplant here three years ago. At that time, she had come in very ill, and didn't go through the full-blown Total Therapy program, but she did improve. She achieved a VGPR and went back to a smoldering state. And yet, here she is, three years later, undergoing more therapy. This is NOT where I want to be sitting in three years' time.

I do not believe in getting one transplant and waiting for the return of this beast. I do not believe in "the cure" or "the treatment" being worse than "the disease." The disease, unchecked, leads to death. The disease, absent the most aggressive therapy available, almost invariably leads to recurrence with reduced effectiveness of existing treatment (though to be sure, there is a lot in the pipeline and I do believe that within 10 years there should be a cure from these novel agents). The disease is far worse than anything that can be done to get rid of it.

Doctors who claim that VGPR is the same as CR have the burden of proving this point of view. And every one of them is completely colored by their bias that Total Therapy is not curative. The most they will say is that for a subset of patients, many undergoing the Arkansas protocol have done very well. But this turns a blind eye to the real, demonstrable accomplishments down here. And I think it is a false view.

I say this having had, I know, a very easy time with chemo relative to what many others experience, and relative to my own initial concerns. As I type this, the third of four days with this bag of poison is coming to a close and I've had no side effects, save the bloating from Dex which doesn't appear to be quite as bad as last time.

But I also say this having observed the preponderance of literature on dealing with transplants and how one's life "is never the same" and one will measure "a new birthday from the date of transplant." These statements, while 100% valid for those experiencing them, are part of what motivated me to write this blog. I approach it differently. I got sick. I have a range of available treatments. I chose the most aggressive one with the expectation -- and now perhaps hope, but still one grounded in data -- that I will be CURED, not simply treated. I refused from day two to let "nothing be the same" because that mentality already gives in to the disease. With a bit of luck, the continued efficacy of the treatment, and the care and support of my family, friends (including those who read this blog) and the fine doctors and nurses to whom I have entrusted my health, things will INDEED be very much the same. Except perhaps I'll be a little wiser, and perhaps I'll had have the chance, through my experiences and through sharing them here, to provide some perspective to others facing this diagnosis that may contribute a bit to the spectrum of information that is out there.

I love and appreciate you all.

Nick