Jay Lake (jaylake) wrote,
Jay Lake

[cancer] I went down to the crossroads, fell down on my knees

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.

Tags: cancer, health, healthcare, personal

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