Saturday, May 26, 2018

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?



4 comments:

  1. Your going to be a doctor when this is all done! Hang in there.

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  2. Indeed, sounds like “Beams not Beads” is the way to go. I’m exhausted, just reading about this, Steve. My best to both of you.

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  3. Once again , thanks for sharing. =jwt

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  4. Hi Steve,
    2 steps forward and one step back. I'm glad they figured out that the beads would be going to the lungs where they wouldn't be welcome. When I had breast cancer, and was to start radiation treatments, I had a session with them where I was positioned so they could make sure that the machine lined up correctly with my tumor. They made me sign a release form okaying the fact that they were going to tattoo me!!! I signed, of course, and the tattoo was two little dots so they could line things up with each treatment. One side effect of radiation is that your skin can be burned. Mine was --after 4 weeks of daily radiation. Beams may be different and you may not have to go daily. But be aware of your skin during the treatment and let them know if your skin feels like you got a bad sunburn.
    Love to you both,\
    Jo

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