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Lakeshore
An author of no particular popularity

Jay Lake
Date: 2012-08-16 05:34
Subject: [cancer] My Terrible, Horrible, No Good, Very Bad Day
Security: Public
Tags:cancer, health, personal
Yesterday, I met with both my medical oncologist and my surgical oncologist. We discussed this week's CT scan results and the recommended treatment paths.

In short, I have three metastases in my liver. The largest is about 2.8 cm. They are present in both the left and right lobes, and one borders on the peritoneal boundary, though there is no current evidence of interpenetration with the peritoneum. (For those keeping score at home, this is my third metastatic presentation following on my original presentation of primary colon cancer in April of 2008. In other words, my fourth bout with Stage IV colon cancer in four and a half years.)

These metastases are surgically addressable. My surgical oncologist does not foresee significant difficulties with the metastasis bordering the peritoneum, but he says if it does look troublesome during surgery, he will fall back to radio frequency ablation (essentially, cooking the cells in and around the site with a microwave tipped probe).

My medical oncologist wants to use the third of the available chemotherapy sequences, which is a reprise of FOLFOX (from the first chemo series) with the addition of Panitumumab (Vectibix). This drug combination attacks the cancer from a different metabolic pathway, specifically blocking something called EGFR.

Neither of the doctors felt like the more rapid multisite presentation of the metastases was outside the expected norms for my cancer. As my surgical oncologist said, if we saw systemic metastasis or multiple organ systems involved, he'd be a lot more concerned. At the same time, both of them were somewhat evasive on the subject of my achieving a full cure. While we still have not officially given up on that goal, it's pretty clear that presenting a third round of metastasis has further diminished my chances of full cure. Reading somewhat between the lines, I'd guess two to three more years for me to live, much of that quite ill either from the treatments or from the end-of-life processes. My medical oncologist did put my five year survival rate at 25%, which based on previous comments seems optimistic.

The good news, which may affect my life expectancy somewhat, is that a fourth chemo series is the final stages of approval, and may be available next year. This would give us one more round of treatments in the rather likely event of further metastasis. As both of them said in slightly different phrasing, we might be having this conversation again next year.

I have been prescribed a twelve-session course of chemotherapy, interrupted after six sessions for liver resecting. I asked whether we should do the surgery first or last, but both doctors in consultation with one another felt this interrupted plan would be most desirable, as it would allow us to gauge the effectiveness of the chemotherapy course halfway through.

The current plan is as follows:

Friday, 8/17 - PET scan
Monday, 8/20 - Business trip to Omaha
Wednesday, 8/29 - Fly to Chicago for Worldcon
Week of 9/3 - Followup CT scan
Thursday, 9/6 - Day surgery to implant the chest port
Friday, 9/7 - Session one of FOLFOX+
Five additional sessions of FOLFOX+, roughly through the end of November
Followup CT scan in early December
Surgery in late December or early January
Six sessions of FOLFOX+, roughly February through April

The first FOLFOX series was very difficult for me. I experienced significant cognitive and emotional impairments which took as long as six months to clear after the end of the chemo series. Also, the peripheral neuropathy was awful. The Panitumumab (Vectibix) also introduces the potential for a significant skin rash with outbreaks of acne as a side effect. I have already been prescribed antibiotics and topical cream for that. Occurrence of this rash is considered a good thing, as it indicates the drug is working.

I am investigating seeking a formal second opinion on this treatment course. I'm not sure there are a lot of good options at this point, but want to confirm that the current plan makes the most sense for my survival and my quality of life. Because of my schedule, the process of seeking this second opinion would likely push commencement of my treatment back a week or possibly two.

After Chicon, I am canceling the rest of my appearances for the year, and 2013 through at least April. This includes me missing both Surrey International Writers Conference (again) and World Fantasy Convention (again).

If it helps you to pray for me, feel free to pray. Just because I'm an atheist doesn't mean I think you should be. Likewise, if it helps you to cuss, feel free to cuss. Or send a check to the American Cancer Society or the Clayton Memorial Medical Fund. Or buy one of my books. Or just go tell someone you love them.

One foot in front of the other.

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Rick Moen
User: rinolj
Date: 2012-08-16 20:06 (UTC)
Subject: (no subject)
I'm guessing the fourth chemo series would involve Zaltrap (ziv-aflibercept), supplied by Sanofi and Regeneron Pharmaceuticals, Inc., which got US FDA approval a week or two ago.

My own choice of metaphor for this situation is that you're playing a game of Outlast the Honey Badger -- hoping to survive and keep relatively healthy enough to benefit when something truly effective is finally found. Not news, I'm sure.

Best Regards,
Rick Moen
rick@linuxmafia.com
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melissajm
User: melissajm
Date: 2012-08-16 22:49 (UTC)
Subject: (no subject)
I'm so sorry, and I hope they get a great breakthrough soon.
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Leah Cutter: Harold and the Purple Crayon
User: lrcutter
Date: 2012-08-17 00:17 (UTC)
Subject: (no subject)
Keyword:Harold and the Purple Crayon
Again, Jay, I am so very sorry about all of this.

If you need more people on call for the chemo sessions, let me know. Am very willing to drive down and provide care if necessary.
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Amanda
User: cissa
Date: 2012-08-17 00:32 (UTC)
Subject: (no subject)
I'm so sorry. I'm wishing you the best.
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User: mmegaera
Date: 2012-08-17 02:40 (UTC)
Subject: (no subject)
Fuck cancer with the horse it rode in on.
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Little and foxy and sexy... what more do you want?
User: little_foxy
Date: 2012-08-17 02:41 (UTC)
Subject: (no subject)
*hugs* because there are no words that haven't already been said.
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thecoughlin
User: thecoughlin
Date: 2012-08-17 02:42 (UTC)
Subject: (no subject)
We've never met face to face but know that I cuss with a vigor than makes Titans shatter and sailors suck their thumbs and cry for their mothers ... right now it's dedicated to you and punctuated with "fuck cancer"
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it's a great life, if you don't weaken
User: matociquala
Date: 2012-08-17 02:42 (UTC)
Subject: (no subject)
Hey Jay?

I love ya.
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Sara: Burt Screaming
User: goldfishsara
Date: 2012-08-17 03:22 (UTC)
Subject: (no subject)
Keyword:Burt Screaming
Cancer scares the ever-living crap out of me. It amazes me to see your posts written in such (seemingly) calm language. I don't know how you feel on the inside, and it's none of my business, but rest assured I'm doing the prayer/cussing combo.

Fuck cancer. Fuck it right in the ear.

Also, as I'm a massage therapist who knows such things, there have been studies done that show massage therapy can help to ease the side effects of cancer treatments. I'm on the other side of the country or I'd find you a referral.
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Jenny Rae Rappaport
User: eiriene
Date: 2012-08-17 03:36 (UTC)
Subject: (no subject)
Fuck cancer, as usual. (My 86 year old grandmother has stage IV lymphoma; we are not happy about cancer in general at the moment.)

At this point, does it make sense to investigate eligibility for clinical trials? Would they offer treatment options that are not yet available to the general public?
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Peter Hollo
User: frogworth
Date: 2012-08-17 06:03 (UTC)
Subject: (no subject)
Can't think of anyone more appropriate to send love to than you, so sending hugs, fuck cancer.

Fuck cancer.
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LiveJournal: pingback_bot
User: livejournal
Date: 2012-08-17 10:47 (UTC)
Subject: reactions to assorted things online
Keyword:pingback_bot
User dichroic referenced to your post from reactions to assorted things online saying: [...] to be Jewish. And finally, as everyone probably knows by now, Jay Lake’s cancer has returned [...]
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LiveJournal: pingback_bot
User: livejournal
Date: 2012-08-17 10:47 (UTC)
Subject: reactions to assorted things online
Keyword:pingback_bot
User dichroic referenced to your post from reactions to assorted things online saying: [...] this time, be eradicated totally in ignominious defeat. I don’t know you, Jay’s Cancer [...]
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Marissa Lingen
User: mrissa
Date: 2012-08-17 11:51 (UTC)
Subject: (no subject)
So sorry to hear this, Jay. Hoping for the best for you and yours. Hang in there.
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amphigori: bfly
User: amphigori
Date: 2012-08-17 14:29 (UTC)
Subject: (no subject)
Keyword:bfly
I am so sorry to hear this, Jay.

Sending you healing vibes and hoping you'll find a way to buck the odds.
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