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!

The latest - puzzling - news

For the second time, we've received CT scan results that initially seemed pretty discouraging, but that took on a different light when our oncologist examined them and consulted the senior radiologist in the clinical trial that I'm in to get his interpretation.

What the initial scan report said was puzzling. My main tumor has continued to shrink; the other existing tumors that in a previous scan had appeared to one radiologist to be growing -- but that our oncologist and the clinical trial radiologist had interpreted as liquefying (i.e., dying) -- are stable. All this is encouraging. But meanwhile, since my previous scan in November, the latest scan shows a brand-new area, 5 cm in diameter -- which makes it my biggest -- that has suddenly appeared. The initial report said there was a 75 % chance this was a tumor, and a 25 % chance that it is dead cells or fat cells. 

You can see why this is odd. The reason that the largest existing tumor is shrinking, and the other existing tumors are not growing, is presumably the chemotherapy I'm getting. But with that same chemotherapy, why would a new tumor suddenly and rapidly grow? One possibility is that the new "tumor" actually isn't a tumor at all, and our oncologist and the clinical trial radiologist see that as a significant possibility. The radiologist’s ultimate judgment was that the CT scan is "equivocal," so we really don't know yet whether this is a new tumor or not. 

That means the next step is to find out what this thing is. The best way to do that apparently is to do another of the MRI scans (with some sort of special augmentation compared to regular MRI's) that the clinical study uses. That will take place next week, and we’ll discuss the results with our oncologist as soon as they’re available. 

If it is a tumor, this is bad but, after talking with our oncologist about it this week, we're not discouraged. One reason is that this tumor's behavior (assuming it's a tumor) is so unlike the other tumors' response to the medication. That suggests that it may not be quite the same cancer as my other tumors -- and that would be quite plausible, because cancers mutate as a result of time and of their interaction with chemotherapy, of which I've now had a lot. That raises the possibility that this new growth may be the result of a mutation that there is an immunotherapy treatment for -- unlike my existing tumors, which were sadly lacking in attackable mutations. This wouldn’t be our next step, but it would be nice to have it available in reserve.

Even if that's not so, our oncologist reminded us that my cancer has seemed, right from the beginning, to be responsive to chemotherapy, and she made clear that she's still got a number of chemotherapy drugs left to employ. And there's also the possibility of treatment directed at destroying this particular tumor; apparently even though I'm basically stuck with an inoperable disease, a particular tumor (like this one) might still be attacked in other ways. Our oncologist mentioned something called ablation, which as I understand it uses heat made by radio waves to kill the tumor, and there are other targeted-attack treatments as well. 

So that's the news. As Teresa says, we've always known that this cancer was likely to zig and zag -- even though we'd have been willing to be an exception to that rule. Meanwhile, on a day-to-day basis what’s most occupying my attention is my digestion. I’ve written about the issues I’ve been having on this front over the past months (here, here and here), and unfortunately they’ve continued, if anything more intensely. 

Whether these have anything directly to do with the developments shown in the latest scan still isn’t clear – not surprisingly, since it isn’t clear what those developments are. Our oncologist thinks the digestive issues are the product of some sort of transient blockage, but that doesn’t explain what the cause of the blockages is. In any case, we haven’t yet figured out how to stop them, though I’m doing my best to hydrate and to follow my “bowel regimen.” 

The good news in this regard is that these events are so episodic. Most of the time I feel reasonably well, and I’ve been making progress on my research and writing. We also have medical clearance to travel, and I look forward to reporting on future trips!

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.