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[cancer] More adventures in oncology, and the return of chemo (lite edition) - Lakeshore
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Jay Lake
Date: 2013-03-09 08:09
Subject: [cancer] More adventures in oncology, and the return of chemo (lite edition)
Security: Public
Tags:cancer, child, family, health, personal, radiantlisa
Yesterday was a big day of oncology for me. Lisa Costello and I went in mid-morning, rode the aerial tram to the main hospital, and got my CT scan done. After that, we went back down the hill and met Dad for lunch, where we talked over my options, much along the line of yesterday's blog post [ jlake.com | LiveJournal ]. After that, we saw my medical oncologist.

That consultation pretty much followed those same lines of discussions. My doctor informed me that my CT of that morning was clear. This is an immense relief. I get at least two more months of my (relatively) normal life. I reviewed my Houston trip, then laid out my views of the options going forward: doing nothing, enrolling in that study, embarking on a chemo series with Regorafenib, or embarking on a chemo series with Vectibix. Plus the nuances of waiting for the DNA sequencing results, and the question of multi-agent therapy while on the Vectibix.

My oncologist pointed out that one of the challenges of managing the DNA sequencing results was going to be that almost any possible treatment suggested by that data would be off-label. This means that health insurance generally won't cover the treatment, and likely my only access to the drugs in question would be through a clinical trial. While I think I was aware of this issue before, I hadn't really focused on it until now. Their point was that waiting for the DNA sequencing results wouldn't necessarily men then embarking on a course of treatment. So if we started either Regorafenib or Vectibix now, we could just stop it again and shift to a new course, if that worked out.

Another thing we discussed was the clinical window for resuming therapy after a surgical resection. I'd understood that to be within eight weeks of surgery. Apparently, this is significant for non-adjuvant chemotherapy, where tumors are known to remain in the body. In my case, with adjuvant chemotherapy — prophylactic treatment in hopes of suppressing or deferring further tumor formation — the clinical window is far less important.

As my oncologist said, "You can't make a wrong decision here." What they meant by that is we don't really know which course of action will be the most effective. Which I already knew, somewhat to my frustration.

We talked about the value of each course, and came back to my stated priority of maximizing life extension. If my priority was quality of life, doing nothing for now would probably be the right choice. But given my profound need to be present for [info]the_child for however many months or years we can scrape out of what's left of my life, resuming chemotherapy, whether on an adjuvant basis (ie, "we don't know what good this will do, but it might help") or via enrolling in the Houston trial (ie, "we don't know what good this will do either, but it might help") seemed to be the right choice.

At this point, I've discounted entering the Houston trial. The dealbreaker for me is the combination of it being an early phase trial, and the use of the FOLFOX backbone forcing me to relocate to Houston for an extended period of time. The discussion shifted back to the choice between Regorafenib and Vectibix. My oncologist felt that keeping the Regorafenib in reserve for a future metastatic presentation was probably the best option for life extension, but again, no one knows for sure. So even though we know the Vectibix has a low probability of being effective at delaying the onset of my next metastasis, that probability is non-zero.

Yesterday I resumed Vectibix.

My oncologist also prescribed Celebrex in order to give me a second agent (it is a COX-2 inhibitor, which may have an effect on my cancer progression as COX-2 is implicated in lower GI cancers).

My daily medication load is a lot less than it was on the full FOLFOX/Vectibix treatment from last fall, but it's complicated because of contraindicated drug interactions, as well as contraindicated dietary inputs. Celebrex doesn't get along with aspirin (which I take daily for heart health). Doxycycline doesn't get along with magnesium (both of which I take daily to deal with Vectbix side effects), it also doesn't get along with dietary calcium. So I now have three tranches of medications a day.

Vectibix isn't expected to be nearly as crippling for me as the full treatments have been, but it will still induce the terrible skin conditions and acute photosensitivity I was experiencing last fall. Which complicates life for me quite a bit. I'm putting up with this in the hopes of buying a few extra months disease free.

Loosely speaking, here's what I learned or relearned yesterday:
  • I still value life extension over quality of life

  • The recurrent return of my cancer is essentially inevitable

  • It almost doesn't matter what I do at this point, given the lack of clinical data

  • Applying the results of the DNA sequencing will be more challenging than I'd initially focused on

  • I'm still overwhelmingly likely to die of this cancer in the next few years

  • I'm still doing everything I can to defer or change that outcome

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Keikaimalu
User: keikaimalu
Date: 2013-03-09 17:35 (UTC)
Subject: (no subject)
Sounds like you have more clarity now than before. I'm glad.

And I realize it is internal clarity, rather than clarity regarding the outcomes of the various options, but internal clarity counts too.
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fledgist
User: fledgist
Date: 2013-03-09 20:17 (UTC)
Subject: (no subject)
There is not much that can be said except to hope that you can be there for your daughter's next major milestones.
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auriaephiala
User: auriaephiala
Date: 2013-03-09 20:26 (UTC)
Subject: (no subject)
Those are very difficult choices you're being faced with, and I think you're dealing with them as well as anyone could.

Have you seen this expose of US medical overcharging. It's quite disgusting: http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bills-are-killing-us/print/
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Jay Lake
User: jaylake
Date: 2013-03-10 21:17 (UTC)
Subject:
2 x 100mg per day, I believe. (Away from home with pills in a case rather than in the prescription containers.)
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Swan Tower
User: swan_tower
Date: 2013-03-10 18:36 (UTC)
Subject: (no subject)
I hadn't thought about the life extension/quality of life difference between the Regorafenib and Vectibix options. That does sound like a sensible basis on which to make your decision, even if there's still a lot of uncertainty around the whole thing.
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barbarienne
User: barbarienne
Date: 2013-03-10 23:34 (UTC)
Subject: (no subject)
This may be a very stupid question...

which I take daily for heart health

-->I don't know your heart situation, but would a few months off from the aspirin make a difference? I mean, heart disease is usually a progressive thing, fairly slow.
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Jay Lake
User: jaylake
Date: 2013-03-11 22:24 (UTC)
Subject:
Really, no. In fact, it's pretty arguable if I should bother to keep taking my statin drug.
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