Progress

Good news is more fun to report than bad!

So here is my good news: the new treatment is making progress.

Or in more detail: I’m now on a combination of irinotecan and 5FU, a combination my oncologist put me on because of the failure of the previous treatment, manifested in the sudden emergence and growth of a new tumor between November 2016 and January 2017. The scan last Wednesday found that that new tumor has grown smaller; so has another tumor that was also pretty big; and none of the tumors I have is reported as growing.

So the plan is: more of the same. My oncologist says that often, with this particular combination of drugs, they gradually lower the dosage – I think because of the side effects, which aren’t terrible but are more substantial than I usually experienced with my previous treatments. But right now, she said, she’d like to keep hitting the cancer as hard as possible, by keeping to the full dose, which sounded good to us. (It seemed a little less good as I felt nausea coming on during the treatment later that morning, but it’s still the right choice.)

And best of all: the oncologist anticipates, based on her past clinical experience, that since this combination has proved effective now, it will likely keep the tumors from growing for a substantial time down the road, even when it is no longer causing them to contract. That means that this is really what we’ve considered the most realistic hope all along: not for complete elimination of the tumors, but to get the most we can out of one treatment, then switch to another, and then to another, all the while taking advantage of everything being learned from the research that’s going on right now. And so far, so good.

Your continued best wishes, prayers, visualizations and any other forms of good will, regardless of theoretical foundation, are much appreciated!

Where things stand now

Here’s the latest news: It appears that the new tumor really is a new tumor – it didn’t exist before November 2016 and, based on the blood biopsy they’ve already done, it seems to have a different genetic makeup than my earlier tumors did. Our oncologist feels this is a development that needs to be nipped in the bud, so she’s switched my chemotherapy. I’m now off the old systemic drug, gemcitabine, which she feels should have stopped this new tumor from growing if it was still as effective as it should be. She’s also stopped the pump chemotherapy drug, FUDR, though we think she hasn’t altogether given up on this one. Instead of all of this, she’s now put me on a biweekly dose of two new chemotherapy drugs.

One I get at Sloan Kettering: irinitocan (nickname: “I ran to the can” – but fortunately I haven’t had much digestive excitement, yet). This one is actually preceded by yet another drug, leucovorin, a “folic acid derivative” which evidently paves the way for irinitocan to be as effective as possible by enabling it to stay in the body longer. Leucovorin isn’t exactly a chemotherapy drug in itself, however, which is why I said I’ve started on two new chemotherapy drugs, even though in fact I’m getting three new medications.

The other chemotherapy drug is called 5FU (also known as fluorouracil), and is apparently related to FUDR, which is one reason we don’t think Dr. Lowery has given up on FUDR. (Teresa thinks that the pump chemotherapy had to stop for the time being so that I could get as much systemic chemotherapy as possible, and that tradeoff makes sense especially if the 5FU is actually delivering a hit similar to what the pump FUDR would have.) I get part of this at Sloan Kettering in an injection called “the push,” but then the rest of it – “the bottle” – comes from a little cylinder called a Dosi-Fuser (diagram here), which continues the delivery of the medication via my port over a 48-hour period. I am not thrilled to be attached to this cylinder for 48 hours, but it’s only an inconvenience so I will get used to it. Actually it’s also bad for my reputation as an arbiter of fashion, but that too I will endure.

The plan is for me to do four rounds of these drugs – each round separated by two weeks – and then it will be time for another scan, probably in late March, to see whether they are working as we hope. My first round was two weeks ago, the second concluded earlier today. The side effects from the first round were not much fun; apparently “flu-like symptoms” are not uncommon, and I had something on those lines for a few days, and not much energy for several more days after that. But in the course of all this I remembered that the first round of my original chemotherapy, back in December 2015, also was pretty tough (I wound up in the emergency room with a fever, which fortunately they brought under control quickly). But once I got used to the routine it actually went quite smoothly for many subsequent rounds. This time, for the second round, Sloan Kettering prescribed additional anti-side-effect drugs to accompany the chemotherapy drugs themselves, and we’re hoping that the net result will be gentler. In any case, I felt well enough to travel with Teresa to see my daughter’s college dance company – which she’s loved for four years and is now the company manager of – have their spring show. And my Dosi-Fuser stayed reasonably well out of sight!

As part of all this, Teresa’s medical expertise is expanding. You may remember that when the incision from my pump surgery opened up slightly, it was Teresa who dressed the wound every day till it sealed itself up nicely. Now it’s Teresa who disconnects the Dosi-Fuser from my port when the 48 hour delivery period is over. The first round Teresa did the disconnection step by step under the guiding eyes of a very helpful nurse at Sloan Kettering, but for this round Teresa disconnected me at home, following just the video and written instructions that Sloan Kettering gave us. Everything went smoothly – yay, Teresa! (And the great advantage of her disconnecting me at home is that we don’t have to spend half a day going into New York City to have the same thing done by their staff.)  

Meanwhile, Teresa feels that our anti-cancer visualization efforts over the past months were incomplete. We focused on wiping out the existing tumors, and they did in fact get smaller. But we forgot about also preventing the emergence of brand new ones. So we plan to be more comprehensive over the coming weeks, and hope that those of you who’ve been sending thoughts and prayers our way – all deeply appreciated – will do so too!

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!