Saturday, July 22, 2017

My new treatment

One purpose of this blog is just to describe how cancer treatment is done – at least how it’s done in my case – and since there’ve been new developments in my treatment it’s time for a new description.

I’m no longer receiving my chemotherapy through my port – the ingenious entry-way implanted just below my right collarbone that enabled me to stop having chemo through my increasingly stressed veins. Now I’m back receiving the chemotherapy through my intra-hepatic pump – the other ingenious device that’s been implanted in me. This one is a good deal larger, and required abdominal surgery last August to install; its function is to send chemo directly to the liver.

The pump was installed, almost a year ago, with the immediate goal of putting me in a clinical trial using one drug, FUDR, via the pump and another, gemcitabine, intravenously. Unfortunately I failed out of that trial when a new tumor appeared in January, and then I went onto intravenous treatment, or rather treatment via the port, with a different set of medications, called 5FU and irinotecan. The intravenous treatment has now failed too, or at least not succeeded; that’s the import of the presence of the two or three small, new, “atypical” tumors I wrote about last week. And now, as I said already, we’re back to the pump, but not quite the same way as last time.

The process started last Tuesday (July 11) with a steroid, meant to combat side effects; that did go in through the port, but that was the only use made of the port. Then I got two chemotherapy drugs. One was FUDR, which was part of the clinical trial combination too. I’m not quite sure why we’ve returned to this drug, but I take it that the doctors think that, at least in combination with the other one I’m now getting, it can still be effective even though it didn’t succeed back in January. Anyway, FUDR went into the pump first, into a compartment of the pump from which it infuses into my liver over a two-week period, which is still ongoing. Then the nurse took the needle out – the rather big needle that penetrates the skin of my abdomen and then goes into the pump. But that wasn't the end.

Next the nurse connected up a container of a second drug, called mitomycin; this is the new drug (new for me, that is) that’s been added to the mix.  Then she – my nurse was a woman – put the needle back into my abdomen, in what seemed to me to be the exact same spot she’d used the first time! I think it was the same needle, but I admit I might be wrong about that; maybe it was another needle, equally large. It looked to me as if the needle had wound up going in in the very spot where a drop of blood had emerged from the first injection; but, again, I might be wrong, and maybe that drop of blood (only one) was new. I was a bit rattled! Anyway, even though the needle had gone in in essentially the same spot both times, the second time the nurse, in some way that I didn’t quite follow, used the needle to access a different compartment of the pump, one that doesn’t store the drug but sends it immediately to the liver. And then this drug was administered via this hook-up over a 45-minute period, during which I was told I needed to stay very still, which I did my best to do.


The alarmingly large needle hurt for a moment as it was inserted each time, but only for a moment. So the experience of having two injections into the pump during the same few minutes was actually only strange, not really painful. The whole process did require me to take a long look at my tummy, though, and since I’ve gained weight while being treated for cancer – a good thing – the esthetics to my mind left a good deal to be desired.

Friday, July 14, 2017

The latest news

It’s not the best news, but not terrible either.

In June Teresa and I spent two busy and enjoyable weeks in England and South Africa, mostly doing research for my biography of the South African lawyer and judge Arthur Chaskalson. We got back from South Africa and the next day, June 23, I had a CT scan. It showed that there had been no spread outside my liver (which is very good), but it also showed two or three new, small growths in my liver. The problem was that the appearance of these growths was “atypical” for tumors, so it wasn’t clear what they were. As a result, Sloan Kettering ordered an MRI to get another view.

This was a total ordeal, because the place it was done, East River Medical Imaging, wasted vast amounts of our time and didn’t produce prompt results. So although the MRI was originally supposed to get done on June 28, it was only done on June 30, and we were told not to expect results before Monday, July 3.

But we didn’t get results that day either, because our oncologist decided that the scans should be presented to the MSK doctors’ regular conference for their assessment. That took place on Thursday, July 6. Even after that we didn’t get the results until after the oncologist had consulted with another doctor -- the reason for this being that our oncologist is leaving Sloan Kettering (for what sounded like an irresistible opportunity elsewhere) and this other doctor is the person our oncologist chose to take over my case. Anyway, the two doctors spoke on Friday, July 7, and were in complete agreement, and here are the conclusions:

First, even though the MRI found the same thing as the CT – new growths of atypical appearance – they’ve concluded that these are new tumors. That means that the chemotherapy I’ve been on since February or so has stopped working, so it’s time to change gears.

So, second, the new plan is to return me to chemotherapy via the pump that’s been sitting in my abdomen all year not really doing anything. I’ll be getting a combination of a drug I had previously, called FUDR, and one I haven’t had yet, called mitomycin. This has in fact already begun, three days ago (July 11). Hopefully it will stop these new tumors.


Meanwhile, I feel fine – except that I’m still getting over my second round of bad cold/bronchitis in a month. Teresa and I had both been completely healthy since I was diagnosed with cancer (that is, aside from the cancer), and now we’ve both had these two bad colds. Boo. 

Sunday, May 21, 2017

Freeing myself of my pain patch

Almost since I was first diagnosed with cholangiocarcinoma, I’ve been on a pain patch. Or rather, to put the point more accurately in a physical sense, a pain patch has been on me – a new one every three days, alternating from one upper arm to the other. Teresa puts them on and takes them off, and in addition to other precautions washes her hands after disposing of them, because they are designed to infuse a painkiller through the skin.

Which painkiller? Fentanyl, whose danger is evident from any number of news stories about people dying from overdoses of it. My own dose levels were never high; for most of my treatment I was on what I was told was an “infant’s dose,” delivering up to 12.5 micrograms per hour. Earlier this year, when I had a series of rounds of painful digestive trouble, I went up as far as 50 mcg (it’s possible to go much higher than that); then quickly down to 37.5.

Then, as those painful episodes receded, I wondered whether I really did have any pain left at all. When you’re on a painkiller, you can know that you feel all right, but you can’t know whether, if you weren’t on the painkiller, you’d feel any different. The only way to find out is to reduce, or go off, the painkiller. Meanwhile I didn’t like having the patches; though my thinking still felt clear, I occasionally felt that I jumbled words in conversation, and I knew that if I were to drive while on the patch – although medically this is viewed as appropriate as long as you’ve adjusted to your dosage level – there might be awkward moments if I were in an accident.

So, with Sloan Kettering’s approval, I set out to see if I could return to life without a pain patch.  About a month ago, I got the dose down from 37.5 to my original 12.5, and then three days later we dropped the patch altogether, so that I was at 0. At that point I didn’t feel very well and so went back on the infant’s dose. However, the people at Sloan Kettering – my oncologist and the pain management nurse practitioner who works with my oncologist – were also interested in seeing me get off the patch altogether if possible. So they advised me to take off the patch three days before my next chemo session, because by that time in my two-week chemo cycle I’d be feeling about as good as possible in other ways, so whatever effects removing the patch might have wouldn’t get confused with the impact of the chemotherapy itself.

So shortly before that next chemo session, which took place on May 5, I stopped using the pain patch. And I haven’t needed one since. I think my body has sorted out enough so that I can tell that the cancer is probably causing me a little discomfort – 0.5 to 1 on the 10-point scale that Sloan Kettering regularly uses (it’s obviously subjective but then so, as to a large extent, is pain). For that I don’t need a patch, as the Sloan Kettering folks agreed.

But there has been one catch to this story: to get off the pain patch I had to go through withdrawal. Not the horrifying discomfort involved in something like breaking a heroin addiction, as we sometimes see on TV, but … not nothing either. I had never felt any craving for the pain patches at all, but nevertheless ending their use wasn’t easy. It was hard for me to get to sleep, because my muscles felt twitchy and my skin felt sensitive and sometimes parts of me felt hot. Why just at night? Apparently because you’re tired, and also because there’s less to distract you from whatever’s going on in your body.

I’ve now been off the pain patch for about two and a half weeks, and these symptoms have abated, but I’m not sure they’ve totally gone away even now. It seems that the most common solution is to take other drugs such as lorazepam, an anti-anxiety drug, or others. Our oncologist told us yesterday that many of her patients who stop using the patch still regularly take some replacement medication in the evenings. I’d rather not go down this road, but if necessary I will. After all, the whole point is to have your body functioning as well as possible: that’s why I started on the pain patches, to avoid chronic lowgrade pain, and if I turn out to need something else now, to avoid loss of sleep, so be it.

Cancer can cause a lot of pain. Fortunately that hasn’t happened to me so far, except for short bouts of digestive trouble which don’t seem to have been directly cancer symptoms at all. And if you need something for pain, it’s worth getting habituated to that something. But it’s all a prospect I’d rather avoid.


In the back of my mind is the possibility of medical marijuana. This is legal in my state, except of course for the fact that it’s still illegal as a matter of federal law. It’s also underresearched, as I’ve mentioned on this blog before. And in my state it’s surrounded by annoying restrictions: you have to establish a “3-month bona fide doctor-patient relationship” before the doctor can provide you with the necessary medical marijuana certification; getting this (at least at one clinic whose procedures I’m looking at) costs $350, and the chance that any of this money, including the price for subsequent purchase of the marijuana at a specially licensed vendor, will be reimbursable by health insurance is probably zero. (Could you even claim it as part of a medical expense tax deduction on the federal 1040 return? Well, not without potentially exposing yourself to self-incrimination under those still-applicable federal prohibitions.) All of which is particularly frustrating since my understanding is that marijuana, though it can be habituating, does not make you subject to physical withdrawal symptoms. So all things considered I may stick to opioids if I have to use anything – but I’d rather stick to nothing at all for pain, which is my current, happy state.