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New adventures in pharmacological philanthropy
In SoCal again for consultations—one yesterday; one a week hence—and the first session of the next stage of treatment, the magic HIPEC bullet having missed, and the disease, only briefly demoralized by chemo, having reappeared at the table, napkin tucked beneath its chin, rattling the cutlery and roaring for seconds. This next regime is called “standard of care”: note that they’re talking “care” and not “cure” now—what a difference a vowel makes, eh? As the oncologist we spoke to at Oakland CæsarCare earlier in the week put it, with a kind of delicate bluntness, “there are not really any good outcomes at this point.” Lina, afterward: “Shit. I guess this thing really is going to kill me.”

“Standard of care,” which, being a standard and all, is administered identically across venues, potentially allowing us to leave off these 700 mile roundtrips, involves intravenous infusions, administered at three-week intervals, aimed at goosing the immune response, together with a daily regimen of an exotic and costly oral medication that interferes with the cancer “growth factor,” but which also comes with a raft of adverse side effects (apart from potential bankruptcy, on which more in a moment) that sound pretty rugged. These protocols between them have a “36% efficacy,” which presumably means that cancer tells the other two-thirds to sod off and pound sand.

Young Dr. P, when we began discussing this phase, cautioned us that the pills were costly. How costly? “I’m really not sure. Maybe a couple of thousand dollars a month.” Well, ouch, we thought, but we can probably wring that out of household expenditures. Sure, fewer wild nights out on the town flinging banknotes to menials in our wake; fewer hundred dollar lunches, which have actually become a thing in Oakland, but hey.

Doc P has not been keeping up with the economics of Big Pharma. A thirty-day supply of the wonder drug (adverse side effects included at no extra charge) retails for a cool $25K. Alas, turning up the sofa cushions yielded only 35¢, so it appeared as though we might need to encumber The Crumbling Manse™. The drug is administered in milligram doses, and when I did a cocktail napkin calculation the cost worked out to around $1.4 million/ounce, which is approaching inkjet cartridge prices. Lina, however, in this respect her late father’s daughter, is always looking for an angle, a shortcut, an advantage, a circumventing of the rules, and discovered that the manufacturer maintains a “foundation” to assist the distressed. This she applied to, hoping for a discount of some kind, and in two business days they contacted her Monday morning and advised us that they were prepared to provide a one-year supply for…

Nuthin’. Gratis. On the house. Free. Your money’s no good here.

Well, then. This intelligence was received—there was much rejoicing—as we were pulling into CæsarCare’s parking structure in advance of our consultation with Dr. Han, who looks even younger than her counterpart in LA. Dr. Han told us that CC was prepared to sell us the medicine for a reasonable $150 monthly copay. Afterward, Lina felt bound in conscience to contact the foundation with this intelligence: “I don’t want to abuse your program.” Their rep scoffed. “Don’t worry about that. You’ve been approved. There’s no reason for you to pay a cent.” And the first consignment was duly received here in Northridge via overnight courier yesterday morning. There had been some earlier concern, when she began her researches, over the timing of the delivery—one supplier L contacted early on was only charging $16K, but cautioned that we wouldn’t receive it for four weeks, and the stuff has to be taken beginning within three days of the first infusion—and CC’s cumbersome procedures might have set us back another week. Given the aggressive celerity with which the beast has moved since winter, it seemed inadvisable to let it frolic further unconstrained for even that long.

Left hanging, a bit, is whether we will leave off these monthly trips to the Southland and rely instead on CC for “standard of care.” The arguments for CC: these daylong drives are hard on us, hard on the decrepit pooch, hard on the car (1400 miles every three weeks); this spartan condo, featuring even fewer of the appurtenances of gracious living since we sent the rented furniture back, is, with its multiple staircases, also hard on the dog, and also represents an (admittedly discounted) outlay of $1100/month; the course of treatment in Oakland is, we are assured by the physicians both there and here, identical to the Cedars protocols. On the Cedars-Sinai side of the ledger, Lina feels “more comfortable” with them. Me, I award the decision to CæsarCare on points, and even L acknowledges the soundness of that reasoning and appears inclined toward it, but she cannot always be relied upon for what you and I might regard as rational judgments, and I am prepared if I must to defer to her contrary wishes, particularly since she is perfectly capable of saying “Oh yeah? Then I’ll just drive down by myself!” And after all, in these conflicts she has the C-bomb in her moral arsenal and I do not.

Anyway, all’s well that ends well, although of course this ultimately won’t end well, but we’re hoping for a series of small successes: that she’s in the “efficacy” group, that the side effects aren’t too ghastly, that we can squeeze another year or two of “quality of life” from the ordeal.

cordially,
New In the absence of good outcomes, I can only wish for the least baddest for you both
--

Drew
New That sounds like quite the win...
...very relatively speaking.
New Re: adventures in pharmacological philanthropy
sounds like the drug company is assisting in costs to chest pound their philanthropy while billing all and sundry for as uch as the market can bear for other more mundane items. Glad you are getting a cost break.
"Science is the belief in the ignorance of the experts" – Richard Feynman
New Thanks for the update.
It's great they won't be stealing from your bank account to pay for the treatment.

I suspect that their "foundation" has a budget that they have to spend, and it would look very bad for them not to spend the specified budget, so they'll gladly do the right thing for you. IOW, you're helping them while they're helping you.

I'm very happy that there's one less thing to worry about in this time of great distress. Wishing you both all the good wishes.

Cheers,
Scott.
New I'm glad they're helping out
And I hope the meds help her out too.
Regards,
-scott
Welcome to Rivendell, Mr. Anderson.
New Sad to hear it's as bad as it is, glad it's not as bad as it could be. Hoping for all the best.
     adventures in pharmacological philanthropy - (rcareaga) - (6)
         In the absence of good outcomes, I can only wish for the least baddest for you both -NT - (drook)
         That sounds like quite the win... - (pwhysall)
         Re: adventures in pharmacological philanthropy - (boxley)
         Thanks for the update. - (Another Scott)
         I'm glad they're helping out - (malraux)
         Sad to hear it's as bad as it is, glad it's not as bad as it could be. Hoping for all the best. -NT - (CRConrad)

Sheer, unadultered, industrial-strength tinfoil-helmet alien-lizard-people drivel of the first degree.
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