[Cancer]
[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]](http://l-stat.livejournal.com/img/userinfo.gif?v=1){kind=small}
the_child
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.
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Posted: 6:38 am Fri March 08 2013 |
Where am I?
You are reading the blog of Jay Lake, speculative fiction writer and author of hundreds of short stories, many novels, and winner of the John W. Campbell Award.
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Comments
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Sends a lot of love your way. <3 <3 <3
I just wish there were something I could say that could help. Really, what that means is, I wish I could cure cancer. Cancerland renders the friends and families of the person with it helpless. We want it to be like in the movies where choices are clear for everyone involved. I guess from what you described so far, my inclination would go with Portland’s approach just because you would be in Portland with your family and friends, especially the child. But really, you need to wait until you get the DNA sequencing results. But really, I just wish you didn’t have cancer – which is obviously what everyone wishes.
Expect a miracle! <3
I am glad you’re back home, and I hope for no news at today’s scan.
Love the nod to The Princess Bride.
Have you looked at any of Kris Karr’s books? While every cancer is unique she is living with a number of tumors and has developed a dietary approach that might be helpful. Her emphasis is on nutritional changes aimed at “not feeding” cancers. It’s not one of those cure-alls, but a supplemental approach. My friend Lisa was diagnosed with Stage IV breast cancer and is now NED after surgery and has been following a lot of Karr’s ideas. Correlation does not prove causality, but what I like about Karr’s approach is IT CAN’T HURT. It doesn’t say “shun doctors, take laetril” it just says “do everything else, but also change your diet.” I’d love it if it could help you.
So much love <3
healing thoughts to you
More healing thoughts at you.
If there is a bigger fire hose, why play with the smaller one in the hope, it might do something?
Best of luck. Personally, if one of your goals is to stick around as long as possible for the Child, I’d ignore the Houston option because it takes you away without a significantly improved outcome. And you do better when she’s around.
Still crossing my fingers that the sequencing comes up with something new and useful.
Be blessed. And find the barrelhouse by the riverside.
It’s a lot to take in. I’m impressed that you have information from your medoncs that indicates treatment flowcharts. The ones we’re seeing in FL for my father act as though all this chemotherapy is a bit of a Magic Thing that we mere mortals are too stupid to comprehend. Frustration galore.
Not that you’re soliciting, but I’d lean toward heading into the MD Anderson recommendation for current chemo in current location, though delaying for at least preliminary results if at all possible. I hope for neg results from today’s CT scan. Best of luck.
If only I could give you a map. . .
Good heavens, what a lot to consider. Hoping for no new thing arising with the CT scan, and a clearer path.
[...] good news: Jay Lake is currently free of detectable tumors. As Jay notes, this is quite different than being cured, but beats the alternative. Indeed, his [...]
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