Sunday, April 22, 2018

Is there really a "problem with miracle cancer cures"?

In an article in today’s (April 22) New York Times Sunday Review section, a physician named Robert M. Wachter writes about what he calls “The Problem with Miracle Cancer Cures” This problem is that the cures are just good enough to tantalize people without being good enough to make a real difference to most patients. Specifically, he says, “[a] recent analysis estimated that about 15 percent of patients with advanced cancer might benefit from immunotherapy – and it’s all but impossible to determine which patients will be the lucky ones.” So patients lured by the likely illusory promise of the new treatments will continue seeking a cure for their disease when they should be focusing on palliative care, with which they can live their remaining time with more comfort and might even wind up living longer.

Dr. Wachter’s concrete recommendations for what to do about this are fine – he wants to encourage patients to combine palliative and curative approaches; to train doctors to better discuss the pluses and minuses of the choices patients now face; and to press research that will identify those patients for whom the new treatments really might be curative.

But his attitude nevertheless grates. He writes that “by blurring the line between cure and comfort – and between hope and hopelessness – they [the new treatments] have disrupted the fragile equilibrium that we doctors have long taken for granted.” And he cites the case of a woman in her 80s, “clearly dying of lung cancer,” whose family asked about immunotherapy. He writes: “When I reluctantly asked our oncologist about this, he didn’t scoff. ‘It could work,’ he said quietly, as if not quite believing what he was saying.”

What’s most striking about this story is Dr. Wachter’s reluctance even to ask. Why is he so reluctant? Put objectively, the reason seems to be that his patient might then try immunotherapy – which “could work” – instead of focusing, as apparently he feels she should, on palliative care since she’s “clearly dying.” There’s an obvious response to this: it’s the patient’s life. And it’s not clear that patients, clearly presented with the relevant facts, are actually unable to make sensible decisions about their lives, and deaths. Nor is it clear that the best decision, measured on some objective basis and then imposed on the patient without her full and knowing consent, is actually “the best”: there are a lot of arguments against paternalism, though my impression is that some doctors don’t seem to be convinced by them.

To be fair, Dr. Wachter says, and I don’t doubt it, that “[w]e already know that despite the unquestioned value of hospice, many patients with end-stage cancer don’t take advantage of it, or do so with only a few days left in their life, having needlessly suffered for weeks or months.” This may be a sign of patient irrationality, though it may also be a sign of poor doctor-patient communication. It might be the result of insurance problems, as Teresa’s pointed out. Or it may reflect that many doctors, unlike Dr. Wachter, are themselves committed to what he calls a “pugilistic approach to cancer.” (I’m sympathetic to those doctors; I’d rather be cared for by one of them than by the opposite, whom we might call a cancer appeaser.)

In any case Dr. Wachter’s approach doesn’t seem to be motivated by just the objective concern about the making of wise treatment decisions. There is emotion here too, in his “reluctance” even to ask the oncologist about immunotherapy. He also tells us that before the advent of immunotherapy, when patients would sometimes ask him about the option of palliative care, while “the conversation is often heartbreaking, it has rarely been a hard call.” And then he adds: “But now it is.”

Dr. Wachter is clearly a caring person, and I don’t mean to suggest otherwise. (According to Wikipedia, he’s a leader in improving hospital care and with a colleague coined the term “hospitalist” to describe his focus.) But it seems fair to say that he himself is distressed by the emergence of these new treatments; they disrupt not only patient choices but doctors’ equilibrium. Before, he knew what to say; now, it seems, he still feels pretty strongly about what to say – that for most patients the new treatments are not going to help – but what he wants to say is no longer as persuasive to the patients. Moreover, what he would have readily said in the past is no longer as persuasive even to him. In 15 % of cases (to use the number from the study he cites), his advice to turn from treatment to palliation would be quite wrong. The arrival of treatments that give a modest degree of hope makes matters unclear and advice uncertain, and the result is hard for doctors as well as patients.

I have been fortunate (sort of!) in my illness; for almost two and a half years I’ve been treated with chemotherapy, with relatively mild side effects. I don’t face the hard choices about palliative care, with or without further treatment designed to fight my cancer, that Dr. Wachter is describing. And I do understand (even if only somewhat abstractly) that cancer doctors, who care for patients whose prospects are often grim, have a job that can be emotionally wrenching on a regular basis. That said, I can’t say that I share Dr. Wachter’s seeming dismay at the emergence of new, but limited, hope. Let hope spring eternal! I’ll do my best to make careful choices based on the data; as my wife Teresa says, this is something that cholangiocarcinoma patients are experienced in doing. But give me a doctor who rejoices in new hope rather than being dismayed by it, any day.

Monday, April 16, 2018

New scan, mixed results

The immediate aftermath of the high excitement I wrote about last time was fairly hum-drum. I’m trying to watch my diet – it’s amazing how many foods may be more prone than others to block one’s intestines – and so far things seem reasonably under control. Foods aside, the main effect of my hospitalization may have been that I lost my regular Friday appointment slot at MSK. Once I got out of the hospital, it took multiple phone calls to get another time – Wednesday, April 11. That meant that my treatment was delayed by the 5 days between when my appointment would normally have been (Friday, April 6) and this new Wednesday time. Meanwhile, it was only on Monday, April 9 that they got me scheduled for a CT scan the following day, April 10, so that the oncologist would be able to evaluate the results of my recent treatment when we met. (They didn’t schedule me for an MRI, which I’ve always had in the past; apparently my oncologist believes in switching between MRI’s and CT scans, though – frustratingly – this change was made without any prior discussion.)

So we came to NYC on April 11. Besides going to MSK, we planned to stop afterwards at New York Law School to see my friends there (and return a couple of overdue books). As it turned out, our timing was very good: we got to see a bunch of my clinical program colleagues (just to be clear: I’m using “clinical” as in teaching lawyering skills, not as in medical treatment) and had a lot of fun talking with them. But I didn’t say much then about the day’s test results; it just didn’t seem the time.

In any case, earlier in the day our oncologist had given us the results of the April 10 CT scan. The results weren’t terrible, but they weren’t perfect either: while my large tumor, off on the left side of my liver, is admirably stable, three smaller tumors over on the right side have grown between 0.5 and 0.9 millimeters. (I asked whether these results could be an artifact of using a CT scan instead of an MRI, but the oncologist assured me that this wasn’t the case.)

Growth is not what I wanted, though it’s still very good that the growth isn’t in newly emerging tumors and that it’s all still confined to my liver. It’s also good that my liver function tests are all in the normal range, so once again my loyal liver cells seem to be able to do their thing despite the presence of the tumors. And despite this tumor growth, when my oncologist checked my abdomen she couldn’t actually feel my liver – which suggests that the tumors aren’t affecting the liver’s overall dimensions.

Over a year ago, when I had just started on the clinical trial using the pump to deliver chemo right to the liver, I had something similar happen: everything was stable or smaller, except that one tumor had appeared and grown. Apparently that one rogue tumor is one of the three that are growing now. A year ago, the fact that there was any tumor behaving this way was enough to knock me out of the clinical trial. Now that I’m not in a formal trial, but just receiving treatment – through the pump again – the Sloan Kettering reaction hasn’t been as dramatic.

Our oncologist thinks that the stability elsewhere in my liver indicates that the chemo I’ve been receiving through the pump over the past several months is still having a positive effect – just not everywhere. So the question is what to do. What she did on April 11 was to give me another dose of my current chemotherapy, which will continue to flow to the liver via my pump for the next two weeks. Then, at my appointment next week – also still not quite scheduled – we’ll consider multiple other options. These include:

(1)  Trying to destroy these three growing tumors. There are a bunch of ways to attack individual tumors, but the ones the oncologist mentioned use radiation, either by putting radioactive beads of a substance called Yttrium on or near the tumors or by hitting them with radiation beams. One particularly interesting option is proton radiation, which evidently can be aimed with more precision than other forms of radiation; we’re not sure, however, whether MSK offers this. I like the radiation idea, since it really seems like there’s something different about these three tumors as compared to the rest. I believe that the biopsy done on one of them after it first appeared showed a different genetic mutation than my other biopsies have found, and certainly their behavior has been different from that of my other tumors. Also they’re in a spot, the oncologist says, where they can be attacked without risk to other parts of the liver.

(2)  Continuing the current pump treatment and perhaps adding a systemic chemo drug that wouldn’t go in via the pump but instead intravenously, to affect my whole body directly; that might in the process also jolt these three growing tumors in my liver.
(3)  Immunotherapy: evidently our oncologist can get the drug Jimmy Carter took for his melanoma (keytruda) quite easily as a “compassionate use.” This drug was great for Jimmy, but of course my cancer isn’t the same as his. (The fact that it’s so easy to get this drug as a “compassionate use” – that is, a use for which the drug hasn’t yet been approved by the FDA – is one indication that the “right to try” legislation that Congress is currently considering may really be unnecessary, but that’s another discussion.)
(4)  Immunotherapy plus: Sloan Kettering is doing early-stage clinical trials using combinations of immunotherapy and chemotherapy. There’s some ground for believing that two complementary attacks are better than one. (Just by way of explanation: immunotherapy aims to get your own immune system working more effectively against the cancer; chemotherapy simply tries to kill cancer cells directly.)
(5)  Targeted medicine, aiming at vulnerabilities created by particular genetic aspects of my tumors; these also would be early-stage clinical trials at Sloan Kettering. Unfortunately, so far my tumors haven’t shown any terribly attractive targets for attack this way – but a few weeks ago Sloan Kettering did a new blood biopsy which may turn out to suggest some promising ways to proceed.
(6)  Clinical trials not at Sloan Kettering; Sloan Kettering is really good but there are several other places that are really good too, and each place tends to have its own projects under way.

The good news is that there are all these options. That really is good news, though I’d certainly have preferred a longer period of stability on the current chemo regime. Now we have a lot of studying and thinking to do. Teresa’s putting her formidable internet research skills to work to update the list of possible clinical trials she compiled months ago, and I’m going to be studying up too – while continuing to write my book!

Tuesday, April 3, 2018

High excitement

Two Sundays ago, March 25, I was at home working on my biography when my stomach began to hurt in a familiar way. I tried to stave it off by taking a pain pill and sleeping through much of the afternoon. But around 6:00 PM it grew worse and became a full-scale episode of what I’d been calling digestive cramping. What that meant was acute pain; then a lot of vomiting; and trips to the bathroom as I tried to empty myself out. But my stomach remained huge, or so it seemed to me, and increasingly painful even as there was less and less inside of me. It seemed as if this time the waves of pain were crashing on each other with no let-up, and the whole episode was going on longer than any previous round. Meanwhile my body got cold and Teresa tells me my skin lost its color. It seemed to get harder for me to focus on simple questions.

Eventually we decided to drive to a nearby hospital, Barnabas (not St. Barnabas anymore, as a result of some permutation of the health care industry). Another option would have been to drive to Memorial Sloan Kettering in New York, but I couldn’t see how I could handle that long a drive. Even the 20-minute drive to Barnabas at 2 AM (by now it was Monday, March 26) seemed very hard, and was. But we got there, went in, and they immediately started taking care of me well. Intravenous morphine brought the pain under control, which was crucial. IV fluids helped get me hydrated again.

The last time we’d been at Barnabas – for another of these incidents – we resisted having X-rays on the theory that I was getting plenty of diagnosis, not to mention radiation, from Memorial Sloan Kettering. This time we were in no mood to be standoffish, and so we agreed to Barnabas’ doing a CT scan, which showed that I appeared to have an intestinal blockage. At this point Teresa and I felt I should get transferred to New York to MSK, but meanwhile the Barnabas people proposed inserting a nasogastric tube to drain my stomach. Again it seemed best to get things started, and so we did.

Inserting a nasogastric tube means that a nurse slides a tube up a nostril and down the back of your throat into your stomach. Meanwhile you drink water through a straw as fast as you can, perhaps partly to ease the tube’s passage down your throat and partly to distract you. The tube got in, but I wasn’t completely distracted and vomited again. From then on this tube was in my throat, feeling very awkward and uncomfortable and sometimes making me want to be sick again, and also abrading my throat. But it stayed in, and stuff kept coming up, pulled by suction through the tube.

At about this point – by now we’re around 11 AM on Monday morning – the ambulance took me to MSK. One great advantage of coming by pre-arranged transfer from another hospital was that I was put in a room in MSK Urgent Care almost at once, which gave Teresa and me a chance to sleep. Another was that my admission to MSK’s hospital also seemed to be a settled matter, and later that day I found myself back on floor 16, where I’d been hospitalized three times before.

Four days later, on Friday, March 30, I was discharged in the late afternoon. What happened at MSK was that I was once again under the care of the surgeon who originally put the intrahepatic pump into me back in August 2016, probably because the likeliest reason for this digestive blockage is scar tissue resulting from that surgery. The surgeon freed me from the nasogastric tube quite early on; that in itself made me feel better. Then what followed was a process of slowly restarting my digestive system: a day of no food, a day or two of clear liquids, a day of non-clear liquids and finally, on Friday, a meal and a half of regular food. What was odd about all this was that basically as soon as the nasogastric tube was removed, I felt more or less okay; as had happened before, I became the healthiest person on the floor, even though I had a real reason to be there. One day I walked four miles (56 laps) around and around the floor; meanwhile other patients who were struggling to walk a couple of laps after surgery the previous day were looking at me enviously. I felt bad for them, because I didn’t have a problem walking; I just had a digestive system that was slowly restarting. Anyway, it did restart, and though I didn’t feel perfect when I left the hospital on Friday, I did feel I was back somewhere near my pre-blockage baseline – and I’ve been doing all right at home since then.

As to actually being in the hospital: I didn’t have much privacy (most of MSK’s rooms are doubles, with the patients separated only by a curtain), didn’t feel perfect, and was certainly bored, but it could have been much worse. Teresa came to see me for much of every day, despite having plenty of other stuff she had to handle at the same time. She didn’t stay the night, as she had on past stays, because my roommate was having a pretty hard time and we didn’t want to add to his burdens. But we had fun together; we figured out how to share a pair of headphones and watch the Spanish TV series we’re currently enjoying on Netflix without bothering anyone. Teresa also brought me lots of research materials for my book so that I could continue reading. I imagine that there have never been as many decisions of South Africa’s Constitutional Court in an MSK patient room as there were in my room last week, and I did read a number of them – and talked with a couple of the nurses about the biography I’m writing. I was impressed by the skill, and also the good cheer, of everyone I dealt with from MSK. And on Friday my daughter-in-law and my two grandsons came to see me, an unexpected treat; we played poker and shot pool in the patient recreation room, and they got their first sight of me in full patient mode. (Fortunately, not including the nasogastric tube.)

Now I need to be as careful as I can to avoid further rounds of this. Last Sunday’s experience was, I think, my fifth round, and in hindsight it seems to me that the previous four must also have been digestive blockages. Fortunately, all of them resolved without steps as substantial as a nasogastric tube. But now I understand the idea of digestive blockage a lot better: like the various other systems in the body, the digestion just has to work. If it gets blocked, you’re in trouble, potentially enough trouble to require surgery. So my diet may have to change: it may be time to say goodbye to spicy foods, which I will miss; it’s definitely time to say goodbye to large meals, and hello to smaller and more frequent ones; and I have to get advice about whether there are supplements or foods that I should add. The latest word -- for now I should follow a "low-residue diet," which aims to omit anything prone to becoming a blockage-causing residue on its way through. All will be worth it to block these blockages!