A new tumor -- and what to do about it

So we've seen our oncologist and she’s given us the report on last week’s MRI. It's not what we'd hoped for but fortunately there's lots we can do about it.

The MRI confirms that the new growth in my liver is cancer. This immediately opens up the kinds of questions I sketched out in last post, which begin with "why is this tumor growing while the others are staying stable or getting smaller?" The contrast is if anything sharper than we'd realized: all the old tumors have, in aggregate, reduced in size by 35 %, while this one has been growing. (One question is whether this one has actually been growing as fast as it seems; it's possible that if they look back at older scans, as they plan to, they'll find that this one has been around, lurking, for some time.) We have the sense that our oncologist finds this quite unusual, and she’s said she wants to be as creative as possible in shaping a response. With that in mind, the first thing she did was to present my case to the full treatment team the day after she met with us (more on what the team recommended in a moment).

Basically there seem to be two possible answers to the "why is this tumor different" question. One is that for some reason the chemo that's been going to the liver and doing quite well with the other tumors has missed this one. That could be because the chemotherapy all comes into the liver via just one blood vessel (I used to have two, but they had to close one off when they did the surgery to install the pump that sends chemotherapy directly into the liver), and possibly something about its flow from that blood vessel to the other tumors and the rest of the liver causes it to miss this one. They can check this with what’s called a “pump study,” and after my case was presented to the whole treatment team last week, they decided to move very quickly to get that done – in fact, I had the pump study this afternoon. (That was quite an experience – they use radioactive injections whose progress inside the body is followed mainly by gigantic “gamma cameras,” and I’m radioactive for the next 4 days!) If it turns out that somehow the chemotherapy is missing this new tumor, then there may be something they can do to reroute it.  

The other possible answer to the "why is this tumor different" question is that the tumor itself is intrinsically different. In particular, the new tumor may have a different genetic make-up than the others, the result of some new mutations in my cancer cells. Evidently cancer is extremely clever about mutating in the face of attack. One way to test this possibility is to do a biopsy of the tumor itself, and they're discussing this. But, I think because the bile ducts and blood system are so intermingled, evidently it's quite likely that DNA from the new tumor is actually present now in my blood, so last week they took blood to send off to a company that will test the tumor's genetic makeup by using just my blood. That should tell us something, in particular about the possibility of immunotherapy targeted at whatever new mutations turn out to be present.

Meanwhile, we wait, though only for a few days. So far our oncologist seems to feel that the pump chemotherapy, using the drug FUDR and focused just on the liver, is working well – except for this new tumor – while the whole-system chemotherapy, using gemcitabine, has come up short. This isn't totally surprising; I've been on gemcitabine since December 2015, and these drugs' impact tends to diminish over time. It sounds like our oncologist is thinking about another systemic drug, related to the pump drug, perhaps one called 5FU (nice name). But it seems they want to know what the pump study shows before making decisions about my medication.

In the somewhat longer run, the oncologist had me sign up last week for the "patient assistance program" run by the giant drug company Merck for its drug Keytruda. Keytruda is an immunotherapy drug that apparently can be tried regardless of whether my tumors, or some of them, have particularly promising mutations to target. The patient assistance program will, we hope, reduce the cost of the drug, perhaps down to zero – which would be a lot less than its list price, which seems to be about $15,000 every three weeks! Realistically, that means that the drug would otherwise probably only be available via some new clinical trial, so the patient assistance program is an attractive possibility for down the road – though I think they’ll try modifying the chemotherapy prescription first. They may also try targeting this new tumor by itself by methods they haven't yet used, such as implanted radioactive pellets or various other ways of attacking an individual tumor. Till now, they haven’t used these individual targeting approaches with my tumors, though I did have one that was much larger than the rest. So why now? Our impression is that they may feel it makes more sense to attack this new tumor individually than it did to attack any one of my pre-existing tumors, precisely because this new one appears to be different from the rest.

All in all, Teresa and I agree that it would be better not to have wound up with a case that’s so clinically interesting. But we also agree that, since that’s what I have, it is really good to have Sloan Kettering's collective experience and expertise being brought to bear on it!

Chemotherapy and its risks for those who administer it

A moment during chemotherapy two weeks ago: the nurse who was about to hook up the plastic bag containing my gemcitabine dose paused to first put on a medical gown. Teresa tells me she’s seen a couple of other nurses do this, but it doesn't seem to be common. Why did this nurse put on the gown? The answer, as she explained, is that it’s a precaution against contact with the gemcitabine. She herself had spilled gemcitabine on her arm at some point, and despite washing her arm quickly, she wound up with a burn on her skin – and that was from just a brief exposure to the drug.

She went on to explain to us that Memorial Sloan Kettering is engaged in a study of the effects of staff members' long-term exposure to chemotherapy drugs. That kind of exposure can be the result of spillage, but also can come from the vaporizing of tiny quantities of the drug during the process of intravenous infusion. In an earlier post I mentioned the new valve we saw not too long ago, used on the IV line in an effort to prevent this vaporizing. Between the valve and the gowns it seems that quite a bit of care is now being taken to protect the nurses, but it’s striking that these steps seem to be quite recent. Was this risk overlooked in the past? Or, on the other hand, is it being overstated now? In our experience, most nurses don’t seem to use the gowns; whether that reflects the power of habit, or the nurses’ lack of time, or instead attests to their sense that the gowns are an unnecessary precaution I don’t know.

The fact is that no one can know very much about this long-term risk, because chemotherapy itself hasn’t been around that long. In effect, the nurses are part of a life experiment to find out what the risks are.

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!