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Jay Lake
Date: 2013-01-07 15:25
Subject: [cancer] You feel the devil's riding crop
Security: Public
Tags:cancer, health, personal
I saw my medical oncologist today. The visit was discouraging but not (yet) depressing.

Basically, they are baffled about the appearance of the fourth tumor. Their hope is that this is testing error on the PET scan. This is not unreasonable, as the MRI did not show a tumor at that site. However, it's still a relatively low probability hope. The far likelier outcome is that this is a new metastatic tumor that has appeared while I was on chemo. As my medical oncologist said, it's unclear what to do next.

Rather than go through more imaging hunting this down, we are going to wait for the surgery on 1/22 and simply have a look at the site with the classic human eyeball, Mark I — a surgical pathologist has been on my OR team before. I am attempting to move my next week's appointment with my surgical oncologist up until this coming Wednesday, but that will depend considerably on what their nurse can do for me schedule-wise tomorrow. As for the procedure itself,we may be looking at a combination of resection and RF ablation, given the distributed geometry of my four (or three) tumors, and the existing surgical insults already inflicted on my liver.

If the tumor is not real, we will have had the surgery regardless, and will be evaluating chemo options. This may include redirecting the substrate from FOLFOX to FOLFIRI, or it may include simply cutting back the chemo. Even without tumor number four, the chemo cannot be considered especially effective at this point.

If the tumor is real, we have, as my medical oncologist and I have agreed, a very bad trend line. I have gone from single-focus tumors every year or so to multi-focus tumors, and now overlapping metastases — meaning no gap time between presentations. In that event, we're aiming for sufficient resection to return me to No Evidence of Disease status — meaning, not that I'm cured, but that I am not currently presenting any tumors. My medical oncologist and I will probably discontinue most of my chemotherapy, as the new tumor would be clear evidence of its ineffectiveness, though likely I'd continue with the remainder of the Vectibix course. As they said, at this point we're doing me a lot of damage for not much clinical benefit.

Going forward, we'll be watching for the next metastasis. We'll continue to treat with surgery and chemo as they present, until one presents in an inoperable location. At that point, we will switch to a care philosophy that balances life extension and quality of life, under a terminal diagnosis. My personal opinion is that my previous assessment of a 2-4 year timeline has been cut roughly in half. As always, there are wildcards and causes for hope, but the odds continue to get ever slimmer.

One of the wildcards I thought of has been shot down. I'd wondered about the value of going out of the country for a liver transplant. My medical oncologist tells me that the associated anti-rejection drugs will suppress my immune system to the point where I would be inviting very aggressive cancers from my existing tumor seeds, and I might actually wind up shortening my life even further.

Another wildcard is in the works. That is, the Illumina genetic testing to type my tumor. This is a long shot with some reasoning behind it. Basically, the concept is that not all cancers have the same genetic signature as implied by their presentation. In other words, a cancer which is phenotypically colon cancer might actually be liver cancer genetically. Since cancer drugs for the most part target genetic signatures, establishing that my cancer did not conform to colon cancer's template would indicate a different course of treatment normally appropriate for the cancer that it is more closely genetically aligned with. As my cancer has been rather idiosyncratic in both its presentations and its response to treatment, this is not an unreasonable thing to check for. Watch for more news on this effort soon.

Next steps are my attempt to accelerate my meeting with my surgical oncologist, followed by the usual pre-operative screenings and procedures as I prepare for the surgery on 1/22. We probably won't know much more until after the surgery and a direct evaluation of the suspected site of tumor number four.

So, not depressed yet, but nonetheless this atheist is waiting for the miracle to come.

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User: martianmooncrab
Date: 2013-01-08 00:00 (UTC)
Subject: (no subject)
That is, the Illumina genetic testing to type my tumor

I will spin my prayer wheel for you on this one.. and that it works for you.
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User: deborahjross
Date: 2013-01-08 00:21 (UTC)
Subject: (no subject)
I'm so sorry to hear this.

Bonnie talks about "dancing with NED" and I think of some bizarre Berlioz waltz (or is "bizarre" and "Berlioz" redundant?)

Wishing you all good things, no matter what happens.
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User: keikaimalu
Date: 2013-01-08 00:37 (UTC)
Subject: (no subject)
This atheist is hoping that your miracle does come.

Damn. Cancer is a despicable, ravening beast.
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User: swan_tower
Date: 2013-01-08 02:24 (UTC)
Subject: (no subject)
I had wondered about the liver transplant idea myself. Sucks to hear that it isn't feasible, though the explanation makes perfect sense.

I will keep my fingers crossed for the genetic testing.
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User: joycemocha
Date: 2013-01-08 04:06 (UTC)
Subject: (no subject)
The genetic testing may shed some light...or not.

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User: zyzyly
Date: 2013-01-08 05:39 (UTC)
Subject: (no subject)
this agnostic is leaning toward the divine on your behalf.
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User: yourbob
Date: 2013-01-08 07:50 (UTC)
Subject: (no subject)
I'm a little surprised at only doing the genetic testing now, after so many weirdnesses. I'm guessing cost/benefit wasn't quite there yet.

Regardless, good thoughts continue as always.
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Jay Lake
User: jaylake
Date: 2013-01-08 13:44 (UTC)
Subject: (no subject)
Actually, this test didn't exist as an approved procedure until quite recently, and it hasn't yet been included in the Standard of Care. That's why it hasn't been done before. Also, it's very expensive and not covered by insurance.
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User: voidampersand
Date: 2013-01-08 08:04 (UTC)
Subject: (no subject)
Each of those DNA sequencing machines is the modern equivalent of a prayer wheel. Moving strands of DNA past the lasers. Reading. Decoding. Praying. Hoping.
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W. Lotus: pink lotus
User: wlotus
Date: 2013-01-08 19:24 (UTC)
Subject: (no subject)
Keyword:pink lotus
I'm wait for a miracle, too.
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That Which Fights Entropy: me with scarf
User: amberite
Date: 2013-01-10 21:34 (UTC)
Subject: (no subject)
Keyword:me with scarf
*hugs* and loud cussing on your behalf.
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