Three years in and still going strong

Today, November 25, is the third anniversary of my receiving the diagnosis of cholangiocarcinoma. The actual diagnosis was not the first sign that I had cancer; in fact, tests had already made that clear. But the last round of testing convinced the doctors that the particular kind of cancer I had was bile duct cancer, a/k/a cholangiocarcinoma, and that’s what I’ve been treated for ever since.

And here I am, three years in and still going strong. The doctors believe that the radiation treatment I had this summer either killed or knocked out of action all my remaining tumors. Based on that, my oncologist told us this month that she was completely comfortable with my not having another scan until January – and that in turn points to her feeling that there would be nothing for a scan to find. Hopefully the scan in January will confirm this, and that would be really good news. But if what it shows is that something has returned, and if that something can in turn be hit by another round of radiation, that will be good too. 

The only downside, which I’ve written about already, is the side effects. I’ve got several, none terrible but all a bit of a bother. I’m tired a lot, and my energy for things like a regular daily walk has declined, as has my walking speed. I’m retaining water, though fortunately not too much; to deal with this, however, requires medicine that in turn can affect other parts of me (basically, the balance seems to be between my liver and my kidneys), so the doctors are doing their best to give me just the right amounts. And the side-effect that may puzzle the doctors the most is that I have cramping in my hands and legs. This one doesn’t seem to have a single cause; it’s evidence, I think, that the body is a complex apparatus and multiple factors can coincide in a particular effect, happily again not that severe. But the odd result of all this is that although fundamentally I’m clearly healthier – no active cancer! There’s a result I didn’t count on three years ago – in these various more superficial ways I don’t feel that great. 

All that said, however, here I am. Last night I woke up at 4 AM feeling nauseous, but a single pill did the job on that symptom. And today Teresa has spent making meat pies (with the inspiration of the British Bake Off show, which we both have been watching), and we will try these home made meat pies tonight. (We had one and it was great!) It is good to be here to get to sample this pleasure. 

While not eating pie or taking a nap to catch up on my sleep I’ve also been making revisions to my book; there is always more to do, and I’m still involved in complex dealings with potential publishers, but today I completed one set of reader’s comments, and so this day marked a writing milestone too. I hope the book will actually be published around mid-2019. If and when that’s done then I will face the interesting question of what to do next. One particularly intriguing possibility is that I write manuals for cholangiocarcinoma patients on the law governing their health insurance, a topic that turns out to have many pitfalls which can confuse a lawyer, e.g. me, and no doubt frustrate a non-lawyer even more completely. Or, of course, there’s the possibility of a European river cruise. Or other places to travel and books to read. I’m looking forward to the chance to choose. The world has so much going on in it! 

Passing My Tests

On September 7, I had two more scans, meant to determine definitively what the effect of my summer’s radiation treatment had been. I’d had one earlier post-radiation CT scan on August 21, but that was meant to make sure that the various side effects I was feeling were in fact side effects rather than something else. These two were focused on whether the radiation had been successful against my tumors – the critical question.

Why two? Because the two scans had overlapping functions. The CT scan looks for actual physical masses, such as tumors. But even if you find a mass you don’t necessarily know what kind of object you’re looking at. The other scan, the PET scan, doesn’t look for physical masses but for activity: if the scan picks up signals of “avidity” – essentially, high consumption of energy, which is characteristic of cancer – that’s a bad sign. What you especially don’t want is for the scans to coincide, as they do if the CT scan finds suspicious physical spots and the PET scan finds those spots fit with cancerous energy consumption.

My scans have now been read by three MSK physicians (and by Teresa and me). They’re pretty technical documents, so we needed the doctors’ translations. But in another way they’re also pretty simple: that is, if the scans are good the doctors are pleased, and if the doctors are pleased then we’re pleased.  All three doctors were pleased; in fact, I think it’s fair to say they were all very pleased. And so we are too!

What the scans showed was first, that all the tumors MSK was attacking with the radiation were now smaller. They hadn’t disappeared, but they were smaller. Second, the signs of extra hunger in the locations of those tumors had also largely disappeared; energy consumption in those areas was now roughly the same as in the normal, unaffected parts of my liver. And, third, the only instances of either physical locations or energy consumption that were at all out of line did not coincide with each other, and so the doctors weren’t worried by these.

In short, the doctors just weren’t worried. The radiation, delivered by the latest techniques so as to give my tumors a high and lethal dose, appears to have done just that. So what do I do now? The answer is: nothing. My next scans are in two or three months; between now and then I won’t receive any treatment for cancer itself, and if the next scans are similar, that will continue.

I should add that though I have no cancer treatment scheduled now, I will continue to have treatment for side effects, such as stomach problems and intense fatigue, and for the side effects of the side effects medicine. Sigh. It was because of possibilities like these that I had yet another scan on September 18. As readers of this blog will recall, one night some weeks ago I had trouble staying upright as I went for a walk, and I’ve also felt from time to time that I’m losing track of my own arguments in conversation. 

With those in mind I had a brain scan. This is an interesting experience in its own right; as the patient, your head goes into a helmet/camera lens which looks a bit like the helmets worn by the evil Empire soldiers in the Star Wars movies, and then you spend 30 minutes being motionless while they scan your brain. The idea of anything out of place in your brain is scary, of course, but the radiation oncologist told us in advance that these scans are usually given to rule out possibilities rather than because the doctors expect to find trouble, and happily that turned out to be the case for me: there’s nothing going on inside my brain except the usual, flawed as that may sometimes be!  I think the moments when I don't seem to be functioning as acutely as I want to are expressions of the fatigue that the radiation has caused me.

Finally, as to my prognosis, I specifically did not ask the doctors to give it a number, and they didn’t, but what the radiation oncologist said is that my prognosis depends on what if anything emerges next; what I already had has been so thoroughly attacked, it appears, that it is no longer a factor. This isn’t quite “NED” – No Evidence of Disease, the modern phrase that doctors use instead of “in remission.” But it does appear to be the next best thing, which I’ll make up: “NEAD” – No Evidence of Active Disease. We certainly didn’t count on achieving this state of affairs back in November 2015 when I was first diagnosed with this insidious, but as we’ve learned not all-powerful, cancer. I’m very grateful to MSK and to Teresa, and others, for all the help they gave me in getting to this point.

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!