11-18-2003: Still dancing with NED

Deb’s regular three-month CAT-scan showed “no evidence of disease,” which is as close to a bill of health as the system can give her. She continues to take Gleevec, continues to work half-time, and is generally healthy. The main side-effects are that her hair is a little thinner, and she gets indigestion if she exercises after taking her drugs with lunch. Not too bad, all things considered.

Longer-term, the news is mixed. Every new report we hear about Gleevec indicates that the effect is temporary, and wears off sooner than the previous report led us to believe. Before describing the latest, I need to introduce some jargon. The cancer researchers talk about a cancer “progressing” -- in other words, tumors get bigger or new tumors appear. This results in conversations that sound strange to the uninitiated, because “progress” is a bad thing. (A lot of medical language is backwards: test results are good if they're negative.)

Gleevec is considered a successful drug because it stops this kind of progress. In other words, tumors get smaller or disappear. The most recent estimate we’ve heard is that about half of the treated patients have seen their cancers start progressing again in a year to a year and a half. Three-fourths of patients see resumed disease progression in two and a half years. Now, that’s scary, but you need to remember that resumed disease progression doesn’t mean that the Gleevec is doing nothing. It just means that the Gleevec-resistant cancer cells are reproducing faster than the Gleevec-vulnerable cells are dying off. So the tumor as a whole starts growing again.

In one of my previous reports I told you about another patient of Dr. Lange, who was estimated to be three weeks from death when he started taking Gleevec. That was more than two years ago. His cancer started to progress again last summer, so Dr. Lange got him into a clinical trial of a new drug, which is designed to work similarly to Gleevec, but to attack the cancer at a different point in its cycle. (I’m sketchy on the details here.) Last I heard, the new drug wasn’t named yet, it just had a serial number. Anyway, Lange’s patient is responding to the new drug; his tumors are shrinking again. Probably at some point that response will stop and the cancer will resume its progress. But if he’s lucky the third drug in the series will have come along by then.

This is the kind of luck we’re currently hoping for. It seems unlikely that Deb is cancer-free, because we know that the surgeon didn’t remove all the cancer. The CAT-scan can’t see tumors that are less than 1/3 of an inch across, so she could still have something of that size or smaller inside her somewhere. It seems likely that eventually, probably sometime next year, one of these scans will see something. Maybe by then the new drug will be as far along as Gleevec was in March.

Meanwhile, we continue to be on the No Regrets Tour. We went to Rome for a week in September and had a great time. (We were there for the all-Italy blackout.) Over the next couple of months we’re going to be visiting several people in the U.S., including Deb’s sister Melissa (who is moving to West Virginia) and Doug’s high-school buddy Steve (who has orders to return to Iraq sometime in 2004). As the Monkees used to sing:

You never know where we’ll be bound.

So you better get ready.

We may be coming to your town.