Archive for September, 2010

An AP article is getting published everywhere, most likely because it stirs up chatter about healthcare reform:

$93,000 cancer drug: How much are a few months of life worth?

I checked whether my insurance covers Provenge, since I’m scheduled for it in October. I was gratified to find that my health insurance considers $23,250 per month of average extended life to be a good deal. So I’ll be wearing a permacath for 6 weeks while my blood gets taken out, treated, and infused back in (three times total). No worse than what dialysis patients go through.

Can’t wait. In the meantime, would everyone please stop yammering about how expensive Provenge is? There are more expensive drugs out there. And when Dendreon can get new facilities up and running (which they couldn’t do until they had FDA approval), maybe the cost will go down just a little. And if it doesn’t, so what? This is the first immunotherapy of its kind for any type of cancer, and will likely be followed by others.

Personally, I’m OK with $23K a month. If I thought it wouldn’t do me any good, I’d pass on it. A common argument about expensive drugs is that too many people are being treated with expensive stuff they don’t really need. I can verify that most cancer survivors know when to call it. There’s a point where the side effects are not worth the possible benefit. But this is not such a case.

As annoyed as I am with that AP article, it does bring up a question worth considering: What is one month of your life worth?


Thanks to the strange logic of Google, this post is ranking really high on web searches for  “provenge” and “permacath”. I really hope it’s not too big a disappointment. I realized that I’ve never told the rest of the story about my Provenge experience last year.

Getting approved and getting scheduled for Provenge was interesting. My oncologist in Las Vegas started getting his patients on the waiting list as soon as Dendreon had FDA approval for Provenge. I had to sign some papers and meet their requirements (“PROVENGE is indicated for men with asymptomatic or minimally symptomatic metastatic castrate resistant prostate cancer”) and my insurance had to pre-approve it.

When I moved up on the list, we came up with a treatment schedule in which I would go to the American Red Cross blood center in Salt Lake City on Monday mornings, my blood cells would be shipped to Dendreon within minutes of finishing the leukapheresis, and then I’d fly to Las Vegas on Thursdays for the infusion. Once that schedule was locked down, I was reminded that if I had to cancel I’d go to the end of the waiting list (which would delay the whole process, possibly for several months).

The week before I began, I had the permacath placed by a radiological surgeon. It didn’t seem like a big deal at the time: I was awake (slightly sedated) during the ten minutes or so that it took to actually insert the permacath into the skin of my chest, loop it over my collarbone, and place it into the jugular vein. It was a little creepy having a pair of tubes hanging out of my chest, but otherwise it was not a big deal. Or so I thought.

The following Monday the first leukapheresis went almost smoothly. At least both tubes were functional and I was only mildly creeped out as the purple blood started to flow through the pheresis machine. I could tell which tube was going into the machine because it was warm, while the other tube was colder. The weird thing that happened within about 10 minutes is that my calcium levels dropped substantially, which made my face and jaw tingle and then go numb. As the blood flows into the machine, citrate is added to prevent clotting. The problem is that citrate binds to calcium and thus the blood returning into your body is missing available calcium. For some people it’s not a problem, so we tried Tums at first to increase my calcium levels. Tums weren’t enough to keep the balance up, so they added a calcium drip to keep me from going into some kind of calcium-deprivation catastrophe.

I did appreciate the permacath when the technicians told me that more typically a pheresis is done with an IV in each arm. Since it takes about three hours to spin out enough white blood cells for the Provenge treatment, and I was trying to keep hydrated and fed during the process, I also had to pee a few times. It would have been awkward at best to hold my arms straight with IVs and try to aim into a little plastic urinal.

So, the first week wasn’t so bad. On Thursday I flew to Las Vegas, starting the morning with Tylenol and Benadryl so I was a bit loopy by the time I got to the clinic. The infusion took about an hour, through a normal infusion needle (not the permacath). They doped me with lots more Tylenol and Benadryl, so I was completely loopy during the infusion. I don’t remember much about the flight home, and the next day I had just a bit of an immune reaction (mild flu symptoms).

The problem began with trying to keep the permacath flushed and clear. Since the ends of the permacath are constantly in the bloodstream, they can become clogged by the normal clotting mechanism of fibrin. The lines are filled with heparin, an anti-clotting drug, but the heparin needs to be removed and replaced every few days to ensure that the ends don’t become clogged. The clinic recommended finding a home health provider to come to my house twice a week and flush the lines… and our first try didn’t work. The fibrin was already clogging the lines. As it turned out, line maintenance became a real problem for the seven weeks that I had the permacath. My insurance didn’t want to pay for home health services (since I was not home-bound), even though it would have been less expensive. So I had to go to my oncologist’s clinic in Salt Lake twice a week, and even then there were issues.

The most memorable moment of the whole Provenge experience was the second time I went for an infusion. I told the nurses about the problems with keeping the line clear,  so they checked and found them blocked again. Even though they weren’t supposed to maintain the line (so many rules about who does what in the medical field), I ended up laying in an infusion recliner tipped all the way back, dopey from Benadryl, with a nurse kneeling over me trying to force the line clear by vigorously pumping a syringe. It finally cleared and they sent me on my way.

In all, I suppose it was worth the trouble. My third treatment was uneventful, except for the stronger immune reaction after the infusion. I ended up in bed for a day, shivering and sweating and wondering what I had gotten myself into. I’ve heard from other men that the third time can be more difficult, probably because by that point your immune system is loaded with the Provenge-modified cells.

It was a relief to have the permacath finally removed, although that was another odd moment. After being told that only the surgeon who placed it could remove it, I assumed that it was a minor surgical procedure. As it turns out, I checked into the radiology clinic, waited around, and then a surgeon came in, asked me to lie down, clipped the wires holding the thing in place, gave a quick tug on the line, and it was out. He told me that if it didn’t come out easily, they’d have to do a more elaborate removal procedure. Lucky me: at least it ended without a hitch.

I’ve heard since my experience that placing a permacath may not be the preferred method for Provenge patients. Along with keep the lines from clogging, you have to keep the main incision from getting infected. Other options (for men who don’t have awesome veins in their arms) include a same-day line placed in the neck directly into the jugular vein, which is then removed after the leukapheresis. As it turned out, I had a decent experience and came away from it with three little scars on my chest—and, hopefully, four extra months of life.


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good by for to day

Nineteenth-century whaling, from the perspective of 6-year-old Laura Jernegan. She spent three years on a whaling ship with her family and kept a journal, the most complete record of the ship’s journey from Martha’s Vineyard to Hawaii and back.

Get a good internet connection and enjoy.

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revisioning your life

An astounding web experience. Get yourself a good internet connection and go play:


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