Spoke too soon

When I posted on Wednesday of this week I was looking forward to getting the infusion of Y-90 radioactive beads into my liver going in the near future, based on the positive findings the interventional radiologist had reported to Teresa from my mapping arteriogram on Monday. But he did say that if any new information emerged he would call us the next day, and I should have known better than to assume that that meant if we didn’t hear from him the next day (which was Tuesday) then all was definitely well. In fact he called on Wednesday and all was not well.

The last step of my adventures on Monday, after the mapping arteriogram itself (which focused, I believe, on where the tumors were in the liver and how to reach them), was a CT scan to check whether any of the tracer material used in the arteriogram had escaped from the liver and gone somewhere else. It turned out that exactly this had happened. Apparently 25 % of my liver blood vessels flow out to my lungs; even 20 % is high enough that they have to change the treatment protocol, and in most people only 10 % of the liver blood vessels do this. Having 25 % interconnecting this way meant that a lot of the Y-90 beads would flow on out of the liver and into my lungs, where they could cause quite impressive side effects. It would be possible to try the Y-90 beads anyway, provided the bead dosage was lowered, but then the likelihood that the treatment would be effective would be lowered too.

So I’m no longer going to be irradiated with the Y-90 beads. Fortunately there’s an alternative: traditional radiation in the form of beams. (“Beams not beads” is my new slogan.) We now have an appointment next week with a Sloan Kettering radiation oncologist, who evidently has already discussed my case with my regular oncologist and the interventional radiologist. The oncologist told us yesterday that M.D. Anderson, the excellent cancer hospital in Houston, had very encouraging data on the use of radiation beams, so this sounds like an attractive option. It may feature another “procedure” first, in which markers would be inserted into my liver to guide the aiming of the radiation beams; these preliminary procedures aren’t completely easy, as I’ve been learning, but still this plan sounds okay.

It actually has one additional advantage, which is that evidently radiation – unlike chemotherapy – can be deployed even when your liver is inflamed. That’s good, because mine is. We got that news yesterday (Friday) morning from the oncologist, and how we came to get the news from her is itself a story.

We were at Sloan Kettering on Friday for my regular appointment to have my pump emptied and refilled; this has to be done every two weeks even if what’s going into the pump isn’t chemotherapy, just to keep it from drying out and then potentially breaking down. We also had an appointment, set up some time back, to see the oncologist. Then, to my amazement, on Wednesday or Thursday that appointment was cancelled. I protested, saying that especially with the decision that I couldn’t have the Y-90 treatment this was a time when we particularly needed to talk with the oncologist.  Her office staff seemed to get that, and it looked like we might talk by phone on Thursday (instead of at the office on Friday) – but then I never heard from her by phone. So by the time we got to Sloan Kettering on Friday, Teresa and I were pretty upset.

Fortunately – sort of – I also hadn’t been feeling so well, and that, combined with the blood test results for my liver, got us a meeting with the oncologist after all. As often happens, once we got past the many difficulties of communication through her office, meeting with her was reassuring and informative. In fact she told us that she’d planned to come find us in the treatment suite where my pump was being reloaded, but we’d moved in and out of there so quickly that that hadn’t been possible. (The pump reloading had gone very smoothly; two weeks earlier the same procedure, at Sloan Kettering’s office in Basking Ridge, NJ, had produced enough bleeding to stain my undershirt and then my shirt on top of that, but this time the whole process barely interfered with our conversation. The photo included in this post is from this stage of our day. Photo credit to Teresa!) Anyway, the oncologist explained why the radiation beam approach sounded like the way to go, and it made sense to us both. She also ordered a liter of intravenous hydration back in the treatment suite, which probably helped me to feel better.

What’s the matter with my liver? As usual that’s hard to say, and on Friday afternoon I had another CT scan so they could get more information on what’s going on in there. But my own theory is that the answer is pretty straightforward: the mapping arteriogram on Monday was an intrusion on my liver, and my liver didn’t like it and reacted. I certainly didn’t feel so great immediately after the arteriogram, and that was easy to understand since the procedure did involve inserting a catheter through my femoral artery. That caused bruising, which seems to be healing fine, but I suspect that there was bruising in my liver too. Hopefully that will also be fine in a few days.

Meanwhile, on to the radiation oncologist and, we hope, to some form of irradiation soon. Who knew I’d come to a point in my life where I’d be so eager for irradiation?

Mapping my tumors

Monday, May 21 was the first stage of my treatment with Y-90 radioactive beads – although it didn’t actually involve the beads themselves at all.

Instead, Monday I received, or underwent, a “mapping arteriogram.” The point of this procedure was to determine exactly where the tumors are that the radioactive beads will be used on, and also to make sure that it will be possible to get the beads to the tumors through my circulatory system.

To find all that out is a fairly elaborate matter, though still an outpatient rather than inpatient procedure. I remember none of it, though it’s possible I was faintly aware of what was going on as it actually happened, since I wasn’t under full anesthesia. Still I understand the basic idea: the interventional radiologist inserted a catheter into my femoral artery in my groin, and then ran that catheter through my circulatory system all the way up to and I think into my liver. Meanwhile, a tracer substance (perhaps targeting a liver protein called albumin) was injected through the catheter so that the radiologist could see exactly where the catheter would be delivering treatment. As I understand it, also, the radiologist wasn’t relying just on looking at whatever scan they were running to follow the catheter’s progress; there’s also some elaborate mathematical analysis done after the procedure itself is complete, by which they make the results as precise as possible.

Teresa spoke with the interventional radiologist about the initial results (possibly while I was still unconscious), and they were quite encouraging. The blood vessels to my liver are something of a challenge, I think because when my intrahepatic pump was installed they had to cut off one of the two main veins to the liver as part of getting the pump’s catheter connected up properly to the liver. That now makes delivery of the beads to their targets somewhat harder, but the radiologist assured Teresa that the procedure is still safe and should be productive – and so we’ll be moving on to the actual infusion of the beads in a couple of weeks.

To carry out this mapping arteriogram required a great deal of organizational and human skill, and reminded me of how fortunate I am to be getting treatment at Memorial Sloan Kettering. In the course of the day I interacted with five nurses; an anesthesiologist; at least three or four staff members, including more nurses, in the procedure room itself; another staff member who returned me (in bed) to the recovery room; and – though I was never conscious of it – the interventional radiologist who was the center of all this. Everyone was friendly and professional, and from my perspective things went pretty smoothly.

From Teresa’s perspective, out in the waiting room after I’d been taken to the room where the procedure was done, things weren’t so good. As I’ve mentioned, the interventional radiologist spoke with her; that part was fine. But we had been puzzled all along by the fact that I was scheduled yesterday both for this procedure, starting at 7:30 AM, and for an appointment in “Nuclear Medicine” at 1:00 PM. We weren’t sure what that second appointment was, but it turned out that it was another scan, I think meant to check whether any of the injected tracer had gone to the wrong parts of my body. For me, this went perfectly smoothly; they wheeled me into the scan room after the arteriogram itself was over, and then wheeled me out and over to the recovery area after that.

But meanwhile Teresa, in the waiting area, was being told on the phone by an increasingly impatient nurse that she (Teresa) might be accompanying me to the scan after the arteriogram was over. This was not going to happen! It would be two hours more after the scan before I was ready to be discharged, and I didn’t get out of bed in that entire stretch. I was in no position to be discharged from recovery and to walk somewhere else in the hospital – and in any case I’d already been wheeled to the scan and had it done.

Back in the recovery room, I was a bit surprised not to see Teresa at once, and I asked a nurse if she could let Teresa know that she could join me. The nurse said they’d done so, or tried to do so, once already, but would do so again – and a few minutes later Teresa appeared. From my end, this seemed simple and straightforward, but it hadn’t been that way out in the waiting room. So Sloan Kettering did all the medical stuff right, but not what might have seemed like the easy part: letting Teresa know when she’d be able to rejoin me! Anyway it was really good to see Teresa, and we spent the next two hours waiting, or dozing, as the two nurses on duty, one of whom was training the other, made sure I was ready to go.

The nurses were a good-spirited pair. We discussed why my last name has two n’s (was I German? No, Jewish. But you can be German and Jewish. Yes, but my Ellmanns were from Rumania) and then moved on to the important topic of what to eat for a special meal. We agreed that desserts – lots of different desserts – were good, and what do you know – Teresa made a berry gratin for our dinner at home. Delicious!

An odd test and its interesting results

This past Wednesday I had my first PET scan. I’m going to describe the experience of the PET scan in a moment, but first, in an effort to understand the science behind the experience a little better, I’ve looked up some terms, and here’s what I’ve learned:  

“PET” stands for positron emission tomography.

“Positrons,” in case you didn’t know (I didn’t have this clear), are subatomic particles with the same mass and magnitude of charge as electrons, and they are the “antiparticle” of the electron. According to the online Encylopaedia Britannica, my source for all this, they “quickly react with the electrons of ordinary matter by annihilation to produce gamma radiation.” That process evidently is less dramatic than it sounds, however, since I didn’t feel any explosions during the test. Man-made radioactive sources – such as the radioactive glucose that was injected into me – produce positron emissions, and these can be measured in the PET scan. (Incidentally, I received a card explaining why I might show up for a couple of days after the scan as radioactive on Homeland Security sensors – but I guess I didn’t pass through the zone of any machine tuned to quite this level of sensitivity.)

“Tomography,” meanwhile, is defined by Merriam-Webster as “a method of producing a three-dimensional image of the internal structures of a solid object (such as the human body or the earth) by the observation and recording of the differences in the effects on the passage of waves of energy impinging on those structures.” I have to admit I’m not sure which “waves of energy” are involved here; what I understand better is that the radioactive glucose, as the Mayo Clinic explains, “collects in areas of your body that have higher levels of chemical activity, which often correspond to areas of disease. On a PET scan, these areas show up as bright spots.” Cancer shows up because cancer cells “have a higher metabolic rate than do normal cells.”

So the PET scan catches the telltale signs of cancer’s metabolic activity. It doesn’t directly measure the physical dimensions of the tumors; for that, apparently, other scans are more effective. But it does tell you how active your tumors are.

Now, the actual experience of the scan: As readers of this blog know, the MRI is an extremely noisy test – full of loud clanking noises which somehow reflect the ongoing use of the magnet that drives the “magnetic resonance imaging.” The CT (computerized tomography) scan is simpler, but even the CT scan often features breathing instructions (“hold your breath”) as the machine’s operator seeks a clear and precise image.

The PET scan has none of this. Although you lie on a narrow table and the table slides you into a donut-ring machine, all of which resembles the MRI or CT process, once you get into the machine – you’re not all the way in, apparently, but I did feel pretty enclosed – nothing happens. No clanking. No breathing instructions. Not even much movement of that table to get a focus on one part of the body or another. And nothing in particular for the patient to do; the operator encouraged me to sleep, and I think I did. About a half hour later, you’re done. Someone said it was really like magic, and I agree – something is being done that you have no perception of at all, and yet it is really happening.

What were the results so magically obtained? We learned these from the interventional radiologist an hour or two after the test was over. He confirmed that I have some areas of tumor activity – I think he found three different areas in different parts of my liver. But he also said that my other tumors, which I think include the largest tumor as well as various smaller ones, are inactive. They’re so inactive that they may be dead – which would be great – but even if they’re not dead they seem to have become inert. I’d rather they weren’t there taking up space, but my liver doesn’t seem to mind them (my liver bloodwork numbers continue to be good), and if most of my tumors have become inert, then it seems as if these years of chemotherapy have had a more profound effect than I’d realized. I thought all the tumors were still in action, just held in check by regular treatment, but it seems that most of them may have moved out of the fight.

The task ahead is to attack the ones that are still showing up as bright spots on the PET scan. We thought that the next step, the step we would discuss with the interventional radiologist, was to attack three or four particular tumors, most or all in one place, but the radiologist wants to do much more than that: he wants to attack all of the tumors that are still bright spots. That means sending Y-90 radioactive beads to multiple parts of my liver, and may mean two separate infusions of the beads.

Needless to say, it would be great to find that all of my remaining active tumors were degraded by this treatment. That may not happen, of course, but the chances of the treatment succeeding in damaging the tumors are good. That’s primarily as measured by the treatment of 15,000 -- or was it 50,000? Teresa and I heard different numbers -- colon cancer patients. (I think this is a newer technique for cholangiocarcinoma, my illness, and as always cholangiocarcinoma is such a rare cancer that the numbers of patients aren’t large.) Assuming we do hit the tumors successfully, the radiologist also expects lasting benefit as a result, rather than, say, the quick arrival of new tumors to replace the old ones.

All this is now moving pretty fast. I’m scheduled for a detailed mapping of my tumors the week after next, and for actual treatment with the Y-90 beads in early June. I’ll report on those experiences as they arrive!