Thanksgiving

We're back from a follow-up visit to Mayo, with little news to report, which is a good thing--the monsters, while still present, have not yet reawakened. I am feeling good, and have enough hair to have resumed using shampoo. That I take pleasure in this surprises me, but it is what it is. The hair is surprisingly helpful as an insulator, and I am gradually finding myself less in need of extra layers of insulation even though the temperature keeps dropping.

I'm now on long term disability, trying to figure out how to keep being useful and productive, while also trying to figure out how to balance my desire to keep being productive against my wish to enjoy as much as possible of my limited remaining time on earth.

The main point of the visit to Rochester was to plan the post-transplant "consolidation" chemotherapy.

Forgive me for getting slightly technical here, but just in case anyone else can ever use the information, I do want to record the plan we arrived at and the reasoning. A consistent theme from clinical trials is that patients like me with 17p deletions respond better to the class of drugs called proteasome inhibitors (Velcade, Kyprolis, Ninlaro) than to other classes of  drugs used to treat myeloma. So we want one of those, along with dexamethasone, which is both dirt cheap and the best single drug for knocking down the category of cells (lymphocytes) from which the tumors originate. The effect is much broader than you might hope for, and the side effects are unpleasant, but umpteen clinical trials have shown dexamethasone to be better than any known alternative. The last drug in the regimen is called lenolinamide, which goes by the brand name Revlimid. It's a close relative of thalidomide, the drug that got famous for causing horrific birth defects in the 1950s. Its action as an anticancer agent is not totally clear, but it has a great track record in myeloma, and has been responsible for a major improvement in survival. However, it's not as clear that it works well for patients like me.

Last year, a handful of new myeloma drugs were approved by the FDA. Among them were one proteasome inhibitor (Ninlaro), and two monoclonal antibodies (Darzalex and Empliciti). Because they're newly approved, and patented, and this is the U.S.A., they are all wildly expensive. Revlimid, Kyprolis, and Velcade are also wildly expensive, by which I mean a year's supply of any of those drugs will run between $100,000 and $300,000 per year, if your insurance company won't cover them.

And there's one more consideration. Revlimid and dexamethasone are tablets. All you have to do is swallow them. Almost all the rest are delivered by infusion, which means that you go to your local hematology/oncology clinic and hang out for an hour or two while an IV is delivered into the increasingly less willing veins in one or the other arm. If you've had any recent contact with your local health care providers, you will realize that "an hour or two" in the infusion room means a minimum of three hours of real time. Velcade can be delivered by subutaneous injection, which takes less time, but still requires showing up for an hour or two, and leaves ugly red welts all over your belly.

Darzalex may well be a wonder drug, and I definitely expect to make use of it. But it is not a cure, so it makes sense to put off its use until what I'm doing doesn't work anymore. Meanwhile, Ninlaro is a proteasome inhibitor, to which I'm likely to respond well, but I can take it orally, so I will not be tied to an infusion center for hours on end. So we're going with Ninlaro/Revlimid/dexamethasone. It's not a cure, but then again nothing is. And we'll probably need to change it out after a year or so.

Apologies to all for whom that was too much. May we all survive the next four years.