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Lakeshore
An author of no particular popularity

Jay Lake
Date: 2013-03-08 05:38
Subject: [cancer] I went down to the crossroads, fell down on my knees
Security: Public
Tags:cancer, health, healthcare, personal
I am back in Portland from Houston. There I had my second opinion consultation at M.D. Anderson, and also met with the Chief Computational Biologist from Appistry, the company that is doing the analysis of my DNA sequencing. I've learned a lot, which has mostly served to confuse me further.

Welcome to Cancerland, right?

At the moment, I am at a crossroads. Let me 'splain.

No, there is too much. Let me sum up.

My current health status is "No Evidence of Disease", or N.E.D. That means they can't find any tumors in me right now. That does not mean that I am cured, or even in remission.

N.E.D. is my friend. But he's a fickle friend. Given the compression of the time between my metastases, and the increasing spread of my metastases when they do occur, it's a virtual certainty that the cancer will return, probably in a fairly ugly form. That return could already be occurring right now. I will be extremely surprised to make it through the summer without such a recurrence, given the accelerating timing of my metastatic frequency. At this point, with my history, the cancer can be assumed with a high degree of confidence to be present throughout my liver (and possibly much of the rest of my body) as tiny, undetectable microtumors.

I've demonstrably failed to improve on several drugs or drug combinations, including FOLFOX, FOLFIRI, Avastin and Vectibix. This means I've exhausted all the first and second line treatments for metastatic colon cancer. There's one more drug in the treatment flowchart which might help me, called Regorafenib. Even there we're talking about positive response rations in the low double digits, I believe something on the order of 20%.

In other words, whether I take the next chemo round or not, there's a 4 out of 5 chance I'll have exactly the same outcome: further progression of my cancer.

Even if the Regorafenib is successful, that's overwhelmingly likely to be a deferral rather than a cure. It takes on average less than a year for an active, persistent cancer to adapt to the selection pressure of the drug and begin to prosper even under treatment. There's nothing in the treatment flowchart after Regorafenib, so at that point I'm seeking experimental therapies or other wildcard options.

My medical oncologist here in Portland wants to treat me prophylactically with Vectibix until the next metastatic event. They then want to transition me to Vectibix plus Irinotecan (the core drug in FOLFIRI) as a holding action. This saves the Regorafenib for two steps down the road.

The M.D. Anderson oncologist disagreed strongly with this plan. They felt that since I'd failed to respond to either Vectibix or FOLFOX, it was simply a waste of time to put me back on those drugs. Rather, they recommended going for Regorafenib now.

I understand the tension here. It mostly has to do with me now being considered incurable. My Portland oncologist is playing for time. Their feeling is that while there's a good chance the Vectibix won't be effective, it's worth a shot, and we save Regorafenib for later, when we need it more. The M.D. Anderson oncologist is looking at the most aggressive treatment now. Neither one of them is wrong, it's just a difference of approaches.

Meanwhile, down at M.D. Anderson there is an early-phase clinical trial I'm eligible for that is combining two existing drugs, Dasatinib and Cetuximab, with a FOLFOX backbone. (I misstated this drug combination in an earlier blog post.) They're looking for an improved reaction to the Cetuximab, which is a close relative of Vectibix, mediated by the Dasatinib, which isn't normally used to treat my kind of cancer. This trial presents a lot of issues for me. The biggest of those is that I would have to live in Houston for months, away from my core support system of friends, family and loved ones; and that I would be away from [info]the_child for months. Travel back and forth is possible, at least initially, but we know from experience that FOLFOX is extremely physically debilitating and cognitively impairing, so after the first two or three sessions, I'd be grounded in Houston. Insofar as I can tell, the odds of this succeeding aren't any better than the odds of the Regorafenib succeeding, and there's far less clinical evidence that I will gain anything. A shot in the deeper dark amid a treatment process that is made up of nothing but shots in the dark.

We're also waiting for a much bigger shot in the dark. The DNA sequencing done through the Acts of Whimsy fundraiser may yield new treatment directions we can't currently anticipate. That information will come back in preliminary form in another week or so, and in detailed form in several weeks. (This is a rather more lengthy response time than I originally understood, but I know why, and am comfortable with the delay.)

So my own crossroads is more of a Battersea Tangle than Robert Johnson's Dockery Plantation crossroads. Do I go back into chemotherapy according to the treatment flowcharts, or do I enter the clinical trial? Do I go into chemotherapy according to my Portland oncologist's recommendation, or according to the M.D. Anderson oncologist's recommendation? Do I defer chemotherapy or the clinical trial until we see the results of the DNA sequencing analysis?

No one can tell me which of these paths has the best likelihood of producing results for me, because no one knows. I'm being told I need to make the decision as the patient, but it's hardly informed consent in any meaningful sense when even my clinicians can't characterize the best path for me to follow. No one knows what will work for me, and none of the choices are all that likely to pay off anyway.

Welcome to Cancerland, right?

I have a CT scan this morning. (Which of course may upset the whole applecart by showing new metastases now, ahead of even my pessimistic estimates of time of recurrence.) Then I'll see my medical oncologist this afternoon. Then I might have chemotherapy, and I might not. Then, well, we'll see. Because I really don't know what to do. And how could I?

I'm down at the crossroads, but cancer will never drive me to my knees. Only to my grave, in its own good time.

Post A Comment | 16 Comments | | Link






Twilight: Daria
User: twilight2000
Date: 2013-03-08 14:32 (UTC)
Subject: (no subject)
Keyword:Daria
If you do the Houston trial, is there any chance of something like a Ronald McDonald House stay *with* *thechild? Being with your family would have all kinds of positive health implications.

Edited at 2013-03-08 02:32 pm (UTC)
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Jay Lake
User: jaylake
Date: 2013-03-08 14:37 (UTC)
Subject:
It would be very, very tough to have her out of Portland for an extended period.
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Twilight: Daria
User: twilight2000
Date: 2013-03-08 15:26 (UTC)
Subject: Re:
Keyword:Daria
I was talking to my daughter this morning about this - I can't begin to understand all you're going through, but my teen lives for track - it's her whole life, but her response was "fuck track, I'd go with you. I can always do online HS." - it's something to consider (along with all the rest of the insane shit you're having to consider).
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User: kshandra
Date: 2013-03-08 17:36 (UTC)
Subject: (no subject)
Keyword:Fuck Cancer
I am neither Jay nor the_child, but based solely on my own experience from when gridlore was doing chemo, I suspect that taking her away from her support network would be every bit as emotionally volatile as taking Jay away from his, beyond whatever educational commitments she has in the area.
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cathshaffer
User: cathshaffer
Date: 2013-03-08 18:27 (UTC)
Subject: (no subject)
This
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(no subject) - (Anonymous)
chris_gerrib
User: chris_gerrib
Date: 2013-03-08 15:03 (UTC)
Subject: (no subject)
Yeah, I'd second that.

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a_cubed
User: a_cubed
Date: 2013-03-09 09:25 (UTC)
Subject: (no subject)
It's that pesky "will the delay make any difference" question that's tricky. I don't think they know, any more than they know whether any of the remaining options will work. The question is, IF they were going to work, will a months' delay make them work significantly less well (including not at all)?
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mcjulie
User: mcjulie
Date: 2013-03-08 15:23 (UTC)
Subject: (no subject)
Well, a lifetime of watching movies has convinced me that you should do the Houston trial, where you'll have many wacky and heartwarming adventures (including finding true love) and the untried new treatment turns out to be a MIRACLE CURE.

Oh, wait, no, there's no way you should do the Houston trial. It will turn out to be a front for mad scientists, and you will end up cured from cancer only to be fighting for your life as a terrifying steampunk cyborg, and in the end you will have to give your life to save the world.

Damn. Hollywood is no help at all unless you already know what genre you're starring in.
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Perdix: Buffy
User: perdix
Date: 2013-03-08 18:23 (UTC)
Subject: (no subject)
Keyword:Buffy
Love. This. Comment. SO. MUCH.
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Keikaimalu
User: keikaimalu
Date: 2013-03-08 15:36 (UTC)
Subject: (no subject)
This sounds like a nearly impossible decision.

I have never faced one of this magnitude, but when grappling between options, I sometimes think, "Six months from now, looking back, what will I wish I had done?"

I realize the answer here is, "Chosen the option that extended my life the most." And there's no way of knowing that from this vantage point. But does the idea of looking back from a point in the future yield any insights?

I suspect, for me, I would hold off on chemo until the genetic analysis results are in. Bluntly, if I were going to die soon regardless, I would want as little of that time to be spent in chemo as possible; I would want to spend my last months being as functional as possible, and as minimally controlled by disease as possible, to build the best possible memories for my loved ones. But I don't have a teenaged daughter.

Alternately, I'd try the chemo option I hadn't tried yet, the one that had not yet failed to work. I don't get why any doctor would want to put you back on something that already has proven ineffective.

I wish you great, great luck in choosing exactly the option that yields the biggest benefits. I wish you the longest and happiest possible life.
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fjm
User: fjm
Date: 2013-03-08 18:31 (UTC)
Subject: (no subject)
I think the issue is that there may be a tension between "more time" and "more time with the_child.
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User: swan_tower
Date: 2013-03-08 18:15 (UTC)
Subject: (no subject)
Not an easy set of choices. I admit my own instinct says the Regorafenib is the better path, but if even your clinicians can't agree, then "instinct" is about as useful as flipping a coin. I keep crossing my fingers for useful data from the sequencing.
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Perdix: Buffy
User: perdix
Date: 2013-03-08 18:25 (UTC)
Subject: (no subject)
Keyword:Buffy
Just wondering: If you did a course of Regorafenib now and it were to prove ineffective, would you still have the option of joining the clinical trial at that point?
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martianmooncrab
User: martianmooncrab
Date: 2013-03-08 19:02 (UTC)
Subject: (no subject)
Some choices would be so easy if it wasnt for what makes our lives worthwhile... so fingers crossed for you on all points.

Now I have a vision of Jays Bar and Grill where the cocktails are all cancer drugs..
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User: mmegaera
Date: 2013-03-08 22:31 (UTC)
Subject: (no subject)
Keyword:True Gold
I know the clinicians don't have any more information, but it seems like the most enormous cop-out on their part to throw this back on you, when you've got even less information than they do, and aren't a specialist (well, more than you were but certainly not as much as they are) on the topic to begin with.

This makes me even more furious on your behalf, as if I wasn't already.
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fledgist
User: fledgist
Date: 2013-03-09 00:08 (UTC)
Subject: (no subject)
Does this mean that right now you're a Neddy?
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