Medical update as of the end of 2018

So as you may already know I’m back in the hospital at Sloan Kettering again; Teresa and I have been here since late in the evening on Thursday, December 27. It wasn’t a perfect time to be admitted to the hospital: we’d missed an important consultation with our oncologist because she was ill, and now a lot of people seemed to be on their way to vacation. But it was the time we needed to come in. We have two big issues to deal with, plus the complication that it’s unclear whether these two issues are actually related, and, if so, how. None of these add up to a crisis, but they do require attention. Some of what we’ve learned may be confusing to you, and it certainly still confuses me, so in an effort to be as clear as possible here’s an end-of-the-year medical update.

The first issues deal with the recurrence of the cancer, which I discussed at length in my previous post. These are mainly in the liver; there is a possible spot on my iliac (pelvic) bone too, but a senior physician from the National Institutes of Health (long-time friend of the organizer of my “dads’ dinner” group in Montclair!) said that if I didn’t feel any symptoms from this – and I don’t – I shouldn’t worry about it.

The question, in any event, is what to do about these spots of cancer. One possibility is more radiation, since many or all of these spots were not irradiated in the summer (because there was no activity there to be attacked). Another possibility is more chemotherapy, on the basis that even though my entire liver, and in fact my entire body, has received chemotherapy over the past three years, in many spots no tumors ever did appear, so in those spots – which may include the current instances of new growth – chemotherapy may actually have been successful up till now. The fact that the tumors have started growing does not disprove this idea, because I haven’t had any chemo treatment since the spring, and at that point these spots didn’t appear to be cancerous; the new growth may simply be the result of non-use of treatment over the past half a year.

Or there are two further alternatives. One is to do nothing, as the NIH physician suggested for my iliac bone spot. If the likely symptoms are slow-moving and low-intensity, this may actually make more sense than more dramatic interventions. It’s always possible that the side-effects will be more severe than the cancer effects themselves, and this is another reason for caution. I think my oncologist may lean in this direction.

But the other is roughly the opposite: to try to become part of an experimental clinical trial. The fact is that in my case this would not be a tremendously radical step, at least in the eyes of the NIH physician we talked to talked to today; he felt that my radiation treatment this summer was a pretty radical step itself. To be sure, as a surgeon, he may start from a certain skepticism towards radiation as an alternative approach. But he concurred with our MSK doctor in being interested in a broadly-targeted immunotherapy drug called Keytruda, and he also described a dramatic treatment NIH has had some success with, in which the patient’s immune system is completely broken down and then completely re-constructed, with a view to creating a set of immune cells that would take on and take down my particular, individual cancer.

All of that deals with the “first issues.” The second issue has to do with the various ways my liver functioning has been impaired. It turns out that virtually anything the body does, the liver may be involved with, not necessarily as a whole cause but as a contributing factor. So, for example, my ability to do multi-figure subtraction, which seems to have lessened, could be an effect of liver malfunction leading to ammonia in the brain; for that there is a medication I am taking vigorously every day. I’ve felt myself growing more impatient than I (hope I) usually am: liver again. And the retention of water in my feet – really quite a lot of water, and probably affecting my balance and if unchecked then generating bruising of the feet, which was the symptom that probably tipped the balance in favor of our coming in to the hospital: liver too.

But since my hospitalization at MSK began a few days ago, we’ve encountered other theories about the water retention. One theory was that I had congestive heart failure, in which the heart and/or the lungs are unable to do the work involved in pushing water through the circulatory system and out. But they’ve done fresh testing of both my heart and lungs and I don’t have congestive heart failure. Another theory is that there is some sort of a block to the flow of liquid, conceivably a tumor that they haven’t yet been able to find on a scan, conceivably a clot. They did a scan looking for clots in my abdomen early in my stay here; it didn’t show anything but that they thought might be attributable to difficulties in the ultrasound process making these hypothetical clots hard to see. But then this afternoon one of the doctors said that a blockage of the flow of liquid would require a really big clot, that they hadn’t found such a clot in my previous CT scan with contrast, done on December 11 2018 or just under three weeks ago, and that the chance that a clot of the necessary size had developed since then that would account for my worsening water reduction was small – and so, in short, that the cause of the water retention probably is not a clot (logic that I think applies to the possibility of a new tumor too).

So it seems possible that the water retention – though in some unspecified sense due to the liver’s damage in the course of the radiation and other treatment it has had – is not related to any physical structure created in the process. I evidently have renewed cancerous activity (see “the first issues” above), but that doesn’t seem to be the direct cause of my fluid retention. Meanwhile they’re contemplating at least two further scans to try to get to the bottom of my various symptoms, and still trying to treat the fluid retention as a symptom of its own, which can be alleviated better at the hospital than at home because the hospital can give me intravenous Lasix, (a diuretic, or in other words an anti-fluid-retention drug). And of course the hospital can play close attention – good-willed but sometimes maddeningly close attention – to my overall condition.

The personal tale of my hospital saga may deserve a separate post. Fortunately, Teresa knows better than I do what’s going on for me medically, and keeps a careful monitoring eye on my day-to-day experience here. So besides a lot of medical thought and effort, there’s a lot of monitoring of the monitors under way. Speaking as the patient (and I know Teresa feels the same way as the caregiver), I do find it rather exhausting! With luck, though, we’ll be home, with a plan, soon.

Holiday wishes to all of you!

Latest news -- back to the fight

Teresa and I spent yesterday at Memorial Sloan Kettering. Unfortunately we didn't come home with news as good as we had gotten from other recent sessions there.

The short version is this: they found from a CT scan on Tuesday, December 11, 2018 that a few tumors in my liver which had been quiet have now woken up and grown a little (roughly a centimeter in each case). Meanwhile a very small lesion in my iliac bone (a “lesion” is a damaged area, and the iliac is the largest bone of the pelvis), which they’ve been aware of but have never seen any clear indication of malignancy from, has also grown a little, which raises a substantial possibility that this is a metastasis (a spread) outside the liver.

What to do? Well, we intend to fight the disease, which is the strategy that has served us pretty well up to now. But it’s harder, because we’ve already used most or all of the proven strategies. (Though perhaps not all; we may talk with the doctor who administered the radiation this summer, for instance, in case he sees something our oncologist – who was out during our appointment yesterday with a respiratory illness, so we only really dealt with her nurses – did not.) Assuming we’ve tried everything proven that Sloan Kettering offers, we might actually sit tight, not getting treatment. This would not be because we’re giving up, but rather because if the tumors in question are growing relatively slowly, then for my case (somewhat as in many cases of men with prostate cancer) it can actually make sense to be equally patient – while we wait for researchers and clinicians to invent the next treatment that really works.

Or we may try experimental treatment ourselves. Experiments, in the form of clinical trials, are the process by which those treatments that really work are found and developed. Getting a treatment that is currently unproven won't accomplish much if it turns out the treatment really doesn't work. But joining the trial means that you potentially get access to the latest possible approaches earlier than other people do, and if they work you get your treatment before most of the world. 

One especially attractive example of this would be the drug Keytruda, which you might remember successfully pushed back Jimmy Carter’s brain cancer. Keytruda is an immunotherapy drug, and it helps to have the right mutations for Keytruda and other similar immunotherapy drugs to target. So far it doesn’t seem that I have any particularly “targetable” or “actionable” mutations. But some people benefit from these drugs even without having the mutations at which they were originally aimed. The biggest problem with Keytruda, aside from the fact that it certainly doesn’t always work, is that it is expensive, unless they (Merck is the manufacturer) give it to you as a compassionate gesture. That they often do, and we applied for it yesterday.

A second place for experimental treatment is in other treatments being tried inside Sloan Kettering itself. MSK evidently has two sets of first-round (i.e. very tentative) clinical trials going on. One set involves immunotherapy (that is, treatment aimed -- like Keytruda -- at the targetable mutations that I seem to be short of, but that perhaps aren’t essential to the success of treatment). The second set involves, I guess, other  experiments. It looks like we’ll be finding out more about these in the next two or three weeks.

The third place for experimental treatment is, as you’d guess, in other treatments besides Keytruda that are being developed outside Sloan Kettering. Different institutions are running their own trials. There’s a possibly promising one at M.D. Anderson in Houston; another at the National Institutes of Health in DC; and Teresa is applying her formidable web research skills to locating others that show some promise.  

So that’s the situation. I intend to work hard on finishing the 400,000 word version of my book (and if I can also produce a shorter version, more suitable for trade publication, so much the better); look forward to spending time with family and friends; and, as I said, Teresa and I plan to keep on fighting.  

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! 

An update -- on side-effects and the subway

Back in the summer, as readers of this blog will recall, I had radiation treatment, fifteen days of treatment which concluded in mid-July. It was high-tech and highly effective; the doctors who reviewed the post-treatment scans found no clear evidence of active cancer, and were very pleased. There’s no sign that this has changed; my cancer may come back but it has been quite decisively defeated for now.

What hasn’t gone away is (or are? - should this verb be singular or plural?) the side-effects of the treatment. There seem to be two sources for these side-effects. The first is the radiation treatment itself, which didn’t feel in any way unpleasant at the time but evidently is a deep burden on the body. The second, Teresa and I think, is all the prior treatment that I’ve had. My liver, in particular, withstood all this treatment for years – but it seems as if the radiation treatment was a tipping point, and now the side-effects are getting more play.

Not that much more play, I should emphasize. I’m still reading and writing for my biography of Arthur Chaskalson, South Africa’s distinguished jurist. I’m also negotiating with the publisher with whom I have a contract to see if we can find a way to agree on the right length for the book (what I gave them was much longer than what they turned out to want); this process is arduous enough to count as a side-effect all by itself!

But there are medical features, the main one of which is sheer fatigue. An example: the day before yesterday, October 26, I was in New York to attend an excellent workshop presentation by a former colleague, but before that got started I made a trip to my dentist. This required coming up out of the subway at 54^th Street and Madison Avenue. Fine – except that at least in the subway hallways that I walked through (and I don’t know any other routes because I don’t know this station) – I confronted three ways out: an escalator running down; a staircase; and another escalator, which wasn’t going up or down. The result was that I had to climb 80 stairs, with only the stairway rest platforms to stop at (there were more stairs afterward, but I’ll stick to these 80). It’s clear, unfortunately, that I don’t have 80 steps of ready climbing ability available for the asking. I went slowly up; along the way a woman asked me if I needed her to get me some water. I did, actually, but declined – I couldn’t really imagine how she would have carried out this generous offer, there in the middle of the subway exit route. I felt that I went through much of the afternoon barely able to move any further at all.

A side note on the subways: Subway performance is most often measured in terms of on-time trains. At the same time, having a down escalator running but no up escalator is also a sign of a system that isn’t working right – another symptom of New York’s infrastructure breaking down, and another reason why I’m fortunate to be able to stay home these days.

This will pass.  (My recovery will probably be quicker than the subway's!) I’m now doing physical therapy, and though I haven’t been at it long I feel like it has already been helpful. It will be sometime before I’m anything like “strong,” but I can certainly become stronger than I’ve been. Still, the set of side effects is startling to experience. I can and do fall asleep in a moment – and then I wake up in the middle of the night eager to read a South Africa book. Then there’s been the swelling from water retention, treated with diuretics: too little treatment doesn’t do the job, too much seems to have other internal effects. And a new antibiotic. Cramping in my legs and hands. And so on … The radiation treatment information Memorial Sloan Kettering gave me warned of possible prolonged fatigue, and other symptoms, yet it’s all a bit wearing.  Still it will all pass, as I said, some of it literally as well as figuratively. 

So that’s my news – nothing to get alarmed about, but a set of effects that I’d like to shed as soon as possible. Sorry for this prolonged complaint!

I get knocked over on my evening walk

My evening walk today was more exciting than usual, as I got knocked over in an encounter with a small child on his training-wheel-equipped bike. I didn't ask for the father's contact information at the time, and Teresa posted on a Facebook group called "Secret Montclair" to reach out to him. That prompted a flurry of comments, some quite sharply critical; the nature of those criticisms will I think be more or less clear from what follows, which is my post (accomplished by my wife on her account) in response to them. The net result is that I feel partly ridiculous and partly outraged. Anywhere, here's what my wife just posted on my behalf on "Secret Montclair," a group to which we're now saying good-bye:

*****

My name is Steve Ellmann. I am the person who was knocked over as a result of an encounter with a small child and his bicycle-on-training-wheels this evening. My wife posted a brief message about this incident, and as one commenter said, this being Montclair, 350 posts can now be expected. I should have written in the first place and I see that I must do so now. I should have asked the child’s father for his contact information, and my wife’s post and mine make that request now. I told the father that I thought I was probably okay, but wasn't sure; that remains true. 

One commenter raises his/her eyebrows because my wife’s post, based on what I told her, says that the child’s bicycle either ran into or almost ran into me. It would be nice if I could say for sure which happened, but actually people often can’t do that with sudden, startling events, and that is the case for me here. I assume the commenter would prefer that I be accurate rather than that I make up a more compelling story.

As to what actually did happen: the first I knew that anything was happening was when this little boy on his bike came up behind me. I think he called out “Sorry” as he approached me. His bike and my legs intersected – though whether I was actually hit I don’t know. I do know that I did something like a hop, skip and jump trying to stay on my feet, but I failed and eventually fell down. I stopped my fall with both wrists (they were indented afterwards from the impact with the ground); probably with my head (my glasses wound up with a leaf or two between them and my face); and probably with one knee, which is currently hurting.

The child said repeatedly that he was sorry, and I responded on the lines that I wasn’t saying anyone was bad, but that you can’t ride a bike so fast that you can’t control it. The father at one point said, perhaps to his kids, that the event was his fault. I repeated that no one had been bad, but I certainly made clear that I was mad about this happening.

What was I mad about? As I told the child’s father, I am a cancer patient. Specifically, I was diagnosed in November 2015 with stage IV cholangiocarcinoma, a cancer of the liver bile duct. No one wants to get any type of cancer, but if you look mine up you’ll see that it is a particularly nasty one. Fortunately my treatment has gone well. As it happens, the treatment included abdominal surgery in 2016 to insert in my abdomen what’s called an “intrahepatic pump.” Every two weeks, when Memorial Sloan Kettering has used this pump, it has injected chemotherapy into the pump, and then a catheter carries the medication from its insertion over to my liver. The result, the valuable result, is that the chemotherapy can be focused directly on just my liver.

But there is a catch. The pump is a once-in-a-lifetime measure. If it breaks inside me – for example, because in an otherwise minor incident something breaks in the pump mechanism – it probably has to be removed (more abdominal surgery) and cannot be replaced. That means that my chance for chemotherapy targeting just my liver by this mechanism would cease to exist. Since my survival may have depended, and might in the future depend, on this treatment, I am not happy to see it put at risk, even as the result of the actions of a small child.

It interests me that some of the comments seem to view me as clumsy or over-zealous. As to clumsiness: perhaps so; the radiation treatment I had this summer and the chemotherapy I’ve had since 2015 have all taken their toll on me in terms of side-effects. As my wife mentions in her second post, another side effect I’m dealing with is low platelets – which make me more prone to bruising from seemingly trivial events.

As to the supposed over-zealousness of my concerns: This criticism implies that in the comparison of survival from cancer and protection of the rights of inexperienced bike riders, or of riders who lack bike lanes, it is the riders whose claims should take precedence. I have to admit that I don’t recognize the moral world in which bike riding is more important than another person’s survival. I am not alone in being an older and somewhat infirm walker in Montclair's parks. There are also a lot of very young walkers. I think all of us who do so have a right to do so in relative safety. 

Another Footnote, This One Ironic

On September 12 I wrote about the failure by a senior MSK doctor to disclose his financial interests in connection with many of the articles that he was publishing. That story in the NY Times was quickly followed by another, about this doctor resigning from his job. That was perhaps predictable. It was less predictable that a new scandal at MSK would be unearthed just a couple of days later, though I did have the feeling the story hadn’t yet been told in full. 

In fact I still have that feeling, and wonder what investigations are now underway at MSK’s competitor institutions. It strikes me as unlikely that only MSK has been infected by the kinds of maneuvers that these articles reveal. After all, these maneuvers are presumably profitable, directly or indirectly, and health care institutions must be competing with each other to provide the best possible pay packages to their top employees. (They certainly are competing with each other to attract patients, as medical advertisements and hospital merger news attest.)

In any case, on September 20 it was revealed that senior MSK doctors or scientists and some board members, along with MSK itself, were the co-owners of an artificial intelligence start-up meant to use MSK’s immense library of accumulated tissue samples to learn better how to diagnose the presence of cancer. In the process, it appears, the people involved disregarded rules governing such "related party" dealing (which is not illegal in itself, but must be correctly structured). They annoyed other MSK physicians by using the results of those doctors’ research in analyzing the tissue samples without their consent. And  this venture turned the samples donated by patients towards the goal of research into potential sources of private profit that surely were never consciously consented to.

I don’t want to say that the issues posed by the duties of honesty, disclosure and frankness are always simple, as my earlier post on nondisclosure may have implied. Truth isn't always the commanding rule -- but it is an important rule, as the age of Trump underlines. Here, it appears that MSK could not get venture capital funding for a project it believed was very promising, and so the investors – as investors tend to do – took on some special risk in the hope of some special gain. That gain in turn would have benefited us. 

But at the same time this series of stories gives the impression that our major medical institutions have decided that the way to provide care is to find profit to support it, and that the task of finding sources of profit need not be undertaken with any over-punctilious concern for virtues like disclosure. What’s perhaps most troubling about the creation of such a culture of gain is that it undercuts the culture of cure that so many of the staff at institutions like MSK pursue with daily dedication -- including in my own case.