Thursday, December 29, 2016

The business of cancer treatment

Our local newspaper, The Star-Ledger, recently reported on a coming change in cancer care in New Jersey (Kelly Heyboer & Kathleen O’Brien, “‘Historic’ deal gives N.J. cancer patients more experimental treatment options,” published as “Deal promises big upgrade to N.J. cancer care” in The Star-Ledger, Dec. 15, 2016, at 1.)

This really is a big deal. It creates a partnership between Hackensack Meridian Health, described as “one of New Jersey’s largest hospital systems,” and Memorial Sloan Kettering Cancer Center. The article reports that it “will affect about one in every five cancer patients in New Jersey, company officials said.” New Jersey patients being treated by Hackensack, or at least some of them – the article isn’t clear on this point – will evidently now have access to Sloan Kettering’s clinical trials. In addition, “[d]octors from both organizations will participate in joint tumor boards and other meetings to help chart treatment courses for patients. The two sides will also establish joint standards of care for patients.” There’s also a medical school tie-in: “[s]tudents at the new Seton Hall-Hackensack Meridian School of Medicine, set to open in Nutley [a North Jersey town] next year, will have opportunities to train at Memorial Sloan Kettering facilities.”

I’m already a Sloan Kettering patient. Teresa and I long ago decided that it was worth our time and expense to travel into Manhattan every week or two for treatment. But there are many reasons why other New Jersey patients might not make that same choice – and yet they could benefit from Sloan Kettering’s expertise. So it seems to me that this partnership should tend to improve treatment for many people. But while Teresa and I have a lot of respect for Sloan Kettering as an institution, we also have a lot of respect for our individual oncologist. She practices in Manhattan; if you want to see her, you have to go to Manhattan. Even before this deal was made, Sloan Kettering offered treatment at a site of its own in Basking Ridge, N.J.; that wouldn’t have been much more convenient to us than Manhattan, but even if it had been, we wouldn’t have switched facilities because it would have meant switching doctors – and that would have been entirely within Sloan Kettering. So I’m just not sure how easily the skills and attitudes that make our Manhattan oncologist impressive will transfer from institution to institution.

This deal isn’t only about benefits to patients, however. It is also about benefits to institutions. As the article says, “[t]he combined organizations will create the largest cancer care network in the region and one of the largest in the country.” It seems that some of the nation’s leading cancer treatment institutions are looking for markets, and that they see New Jersey as full of opportunity. Even before it reached this deal with Hackensack Meridian, Sloan Kettering was developing two more sites of its own in New Jersey. I understand that Sloan Kettering also has sites in Westchester County, north of New York City, and on Long Island. Sloan Kettering seems to be aiming to become a regional treatment center. But at least one other leading cancer treatment center has even broader ambitions than that. The article reports that “[a]nother competitor, the MD Anderson Cancer Center in Houston, is also expanding to have a national footprint. It has partnered with the largest collective physicians’ practice in [New Jersey], Summit Medical Group, to provide cancer care in New Jersey under the Anderson name.” 

It’s clear that cancer treatment is a big, competitive business, and that the powerhouse institutions in this field are moving to extend their reach. That may well be good for patients – but I’m sure that individual patients will still want to find doctors whom they can rely on, and I don’t think that the many doctors who in the future may be grouped under prominent institutional brand names will all be fungible.

Update: a quiet end of the year

Last Wednesday, December 21, was my regularly scheduled chemotherapy day. It went pretty well – well enough that afterwards Teresa and I had the energy to walk a little ways downtown to Bryant Park, near the New York Public Library, to do some holiday shopping in the open-air market there.

The previous two weeks had been pretty uneventful – which was actually quite a big event, since what it meant was that I hadn’t had another round of the painful digestive issues that had made things difficult in previous chemo rounds. To our surprise, however, on Wednesday morning a few hours before the treatment – we got up about 5 AM to drive to New York before rush hour -- my stomach or abdomen began to hurt in roughly the same way as in those previous episodes. That was disappointing, but fortunately there was one important difference between last Wednesday and the two previous rounds: it wasn’t as bad, and the pain pills I took brought it mostly under control. That’s been the case since then as well; with enough attention from me to the details of my digestion, it stays pretty much okay.

In one sense, it was good that this incident took place on Wednesday morning, because it meant that my oncologist got to see me as it was taking place. She pushed and prodded my stomach, examined my morning’s lab data, and concluded that we should wait and see. She raised the possibility of moving up the date for my next scans, currently scheduled for early January, but felt we didn’t need to do that if matters remained under control – as they did.

So off we went for treatment. (Actually, off we went back to the waiting room, where we read for quite a while; then we went for treatment – but we’ve gotten used to this pace.) I was having both the systemic chemotherapy, gemcitabine (which used to be intravenous but now goes in through my wonderfully efficient new port), and the pump chemotherapy, FUDR. There were only two surprises along the way. One was that we gradually realized that the nurse who was responsible for most of our treatment, a young man who looked familiar but whose name we didn’t seem to know, was actually the identical twin of another nurse on the ward. I think the second twin may have been a holiday temp; at least I don’t recall seeing these two guys walking up and down the treatment suite hallway ever before!

The other was that when it came time to administer the pump chemotherapy, the nurse who handled that (not the newly revealed identical twin – if he wasn’t a regular member of the staff then he wouldn’t have been likely to know how to use this particular technology) said to us “For your information, the dose has been reduced.” It turned out that the dose had been reduced by 50 percent. The reason was that one of my liver function numbers, as measured in that morning’s blood work, was off – not wildly off, but far enough to trigger a mandatory dosage reduction. The rationale is that probably what’s causing the liver issue is that the pump chemotherapy is a burden not only on the cancer cells of the liver but on the healthy cells as well. Actually, this was the second time the liver numbers had been off, but the first time they didn’t reduce the dose because they thought the problem might be dehydration caused by my digestive problems; this time, I think, my digestive system was functioning well enough that that explanation couldn’t account for the liver number. It was disappointing not to get a full dose, but Teresa tells me that many pump patients have to have their dosage adjusted, and often more quickly than I’ve had to. Now, in any case, I’m hoping that a half-dose holiday will let my liver get back to normal, so that the chemo can be ramped back up too.

So that was that. I’ve now been in chemotherapy – with a pause for surgery along the way – for a bit more than a year. I don’t love it, but I can live with it, and I’m very grateful that so far it has helped me fight this disease with some success. I’m ready for more in the New Year. And Happy New Year to all of you!

Tuesday, December 6, 2016

Hoping for monotony

Cancer treatment is sometimes monotonous, sometimes not. I suspect one would rather have it be monotonous. But here are my recent highlights:

First, and most important, when I had my latest scans – not the ones required when I recently had to go to Urgent Care, but the regularly-scheduled scans that are part of the clinical trial I’m in – they basically confirmed what the Urgent Care scans had shown. That is: my largest tumor is unmistakably smaller, while three other, much smaller ones seem larger. That might seem rather ambiguous news, but my oncologist and the clinical trial radiologist concur that the seeming growth of the smaller ones is actually the result of their liquefaction, in the course of which the inside material of the tumors dies. So it appears that, a year after my diagnosis, overall my tumors are less substantial than they were back then. And that’s very good news.

Second, I now have a new piece of hardware: a port. Many intravenous chemotherapy patients have ports; in fact, it may be very unusual to receive intravenous chemo for as long as I have (I started last December) without having a port installed. I was the reason for the delay, I’m afraid; I didn’t want anything else installed inside me if I could help it. But now I’m a convert to ports. My friend who's been around a similar block said I’d like it, and she was right. The port itself lies under my skin just south of my right shoulder; it can be felt but it can’t be seen under my shirt. What it does is to enable the hospital to take your blood, or inject chemotherapy (or other medicines) into your blood, without using your accessible veins, and that’s good, because over months of chemotherapy your veins get less and less accessible. With the port, a single needle-prick gives the medical people access, via a catheter that runs over to my circulatory system near my heart, to a vein that’s so big that chemotherapy doesn’t faze it. All this is good, and the process of installing the port – an outpatient “procedure” in which I was in some sense still conscious, but never felt any discomfort at all – not too burdensome.

Third, the least monotonous feature of the last couple of weeks: about a week after my last chemotherapy infusion, or in other words about a week ago, I began to have a lot of abdominal pain again. This was what had taken me to Urgent Care a few days after the previous round of chemotherapy, and it was what I thought I now knew how to control: for pain, take pain medication. I did, but not enough. We wound up back at Sloan Kettering on Friday of last week, to get IV fluids (because by then I was probably dehydrated), to receive a dose of IV pain medication (through my handy new port), and to consult with the pain management specialist. She was very helpful, but the help came at a certain price: to control the pain required a lot of medication, in fact about three times as much as I'd had before. I also switched medications, so the quantities before and after aren't precisely comparable, but my general sense is that now I’m taking, and authorized to take, more.

All of this worked; the pain receded, and that’s great. But the pain medication also seemed to make my thinking fuzzy. Perhaps that’s not so, but it is certainly worrying, and so now I’m trying to reduce what I take as rapidly as possible (but not faster than that!). The best way to do that is to avoid the incidents that required the medication. Doing that in turn involves an increased level of attention to my digestive process that I don’t entirely welcome either – but both these pain incidents seem to me to have been about digestive events (whose details I'll spare you), and as a result, my “bowel regimen” is now a matter of great interest and importance for me.

Tomorrow is my next chemotherapy day. I am hoping that by eating right and medicating right I can, this time, achieve monotony!