The latest from MSK

Here's the latest -- a bit too action-packed, though also interesting from a sufficiently abstract perspective. Hopefully it's clarifying for you (and Teresa and me). 

So: as you may recall, I was admitted to MSK’s hospital on Thursday, December 27, and remained there until Monday, December 31. This hospitalization was fundamentally about the water retention in my feet, and to some extent throughout my body. The core question seemed to be how to balance the available treatment's impact on my liver with the impact on my kidneys; they sent me home when they felt they had a plan for doing just that.                                                                                                                

Unfortunately the next big event, which took place two weeks later, was another MSK hospitalization, or rather a prolonged stay at MSK’s Urgent Care: almost a hospitalization but not quite. The reason for this one was that I was suffering another of the partial – but very unpleasant – digestive blockages of which I’ve had 5 or more at various points in my treatment. This round began on Tuesday, January 15  2019; or to be more precise, it had begun late the previous night, around 11 PM on Monday, January 14. We hoped I would just feel better, as has happened in at least one of these rounds before, but I didn’t. So around 2 AM on the morning of Tuesday, January 15 we arrived at the Urgent Care Center, which is located in the same building as MSK’s hospital on NY’s East Side. We stayed there till around 5 PM on Tuesday, January 15, so I was in urgent care for well over 12 hours but never actually admitted as an inpatient. Why not? Well, one reason – the fact that the hospital staff lost track of where I was – needs an account all its own, which I hope to write later today. But I think the main reason I wasn’t admitted – aside from MSK’s complex logistics – was mainly that the treatment they gave me for the pain of the digestive blockage (intravenous morphine, available only in a hospital and definitely not at home) was effective.

There was another reason that I felt better: a reason Teresa has put together. This is that since what is happening is some sort of blockage, where tubes of my digestive system rub up against some other part of my digestion and get kinked up together, I will feel better if the kinked up strands can be made to loosen up and un-kink. The first evidence we had had of this theory’s validity came the night I was taken by ambulance to the Barnabas Hospital in New Jersey to be treated for an earlier blockage (perhaps the second one I’d had). By the time we reached the hospital, after a drive in which an EMT and I discussed my forthcoming biography of Arthur Chaskalson, I felt distinctly better. Teresa hoped – it was really her call, because I was in so much pain that I didn’t have much strength for making a choice in the early morning of January 15, 2019 -- that on January 15, the drive from home in the New Jersey suburbs to MSK would help. As far as I can remember (which is not too far!), it did.

We hoped that this theory came with a corollary: namely, that if the pain came from a blockage resulting from a temporary kinking, then it did not come from something permanent or semi-permanent, such as the renewed growth of my tumors. While we were at MSK on January 15, they did another X-ray and also an abdomen pelvis CT scan (back on December 11, 2018 they had done a “CT chest abdomen pelvis” scan). The January 15, 2019 scan showed continued cancer growth, but it is difficult to know how much weight to put in this reading, since different doctors with different amounts of time may reach different conclusions about what a scan says. But the urgent care doctor’s view is that the cancer could in fact be the cause of the latest digestive round.

Since I was discharged I’ve done my best – with Teresa’s careful support – to eat foods that won’t put any more stress on my digestive system than necessary. That’s not by any means easy, but since then the pain I’ve had has been manageable, and I’ve had no need for intervention against what doctors call “breakthrough pain.” I hope this continues!

And there is more to do as well. We’ll also be discussing treatment options again; these promise to be a major topic of conversation for an indefinite period. I will get an MRI of one suspicious area to see if it’s cancerous, early in the week; I may also get a "blood biopsy," meant to look for any "targetable" mutations in my tumors' genetic make-up that could be pursued with treatment. I also should receive, whether in a document or otherwise, my medical exemption from jury duty, which will remove that concern for two years. Later in the week we see the oncologist. She in turn has already agreed that it is appropriate for us to discuss matters with the radiation oncologist, whose high-dose approach over the summer was apparently both fatal for my liver tumors and quite a challenge for my liver’s condition overall, so we’ll be setting that up. And over the weekend we go to see … Hamilton! (I'll bet you didn't expect this paragraph to end with "Hamilton"; once again Teresa is the mastermind, having won a lottery giving her the opportunity to purchase tickets.)

And that’s the news.

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!