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[cancer] CEA levels are up, this is (probably) very bad news - Lakeshore
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Jay Lake
Date: 2012-11-11 07:02
Subject: [cancer] CEA levels are up, this is (probably) very bad news
Security: Public
Tags:cancer, health, personal
Got this email from my oncologist yesterday, excerpted and edit slightly for clarity:
Your CEA is up slightly to 4.6. I think we should get a CT scan the week of Nov 19th to see what is going on.

This is not good news, and is probably very bad news.

For those who haven't been following until recently, CEA is carcinoembryonic antigen. Per Wikipedia:
It is normally produced during fetal development, but the production of CEA stops before birth. It is not usually present in the blood of healthy adults, although levels are raised in heavy smokers. CEA is a glycosyl phosphatidyl inositol (GPI)-cell surface anchored glycoprotein whose specialized sialofucosylated glycoforms serve as functional colon carcinoma L-selectin and E-selectin ligands, which may be critical to the metastatic dissemination of colon carcinoma cells.

In other words, it's a tumor marker associated with my kind of cancer, especially in its metastatic form.

CEAs can manifest for other reasons. Wiki mentions smoking. Severe bowel inflammation can also cause CEAs to be present.

In my case, while I certainly have bowel inflammation as a result of chemotherapy's persistent ravaging of the cells lining my GI tract, my historical CEA levels over the past four years have not tracked with that problem. They have tracked inconsistently with the presence of tumor activity in my body. In brief, I've had low CEA levels during periods of tumor activity, but I've never had elevated CEA levels except during periods of tumor activity. That is to say, low CEAs are not an affirmative sign that I am cancer-free, but elevated CEAs are always associated with increased cancer activity.

Now, three rounds into my FOLFOX and Vectibix treatment, my CEAs are up to 4.6, about a 31% increase over the 3.5 measured last August when this metastatic presentation was first diagnosed. That would be what we in layman's terms call a trend in the wrong direction.

CEA Levels as of 2012_11_08

The cut off for clinically significant CEAs is 3.1, anything below that is considered normal. For reference, my all time high CEA was 10.9, 5/21/2011 during the early phases of dealing with my liver metastasis. My low CEAs are 0.2 to 0.3 when there's no tumor activity.

So, this likely doesn't mean my cancer has gone into runaway train mode. What is does (probably) mean is that something is growing when it really, really shouldn't be. My somewhat informed speculation as a long term cancer patient (over four and a half years with Stage IV colon cancer plus metastases) is that either the current multi-focal metastatic liver tumors (Bush, Cheney and Rumsfeld) are proving chemo-resistant and growing despite the current regimen, or that a new metastatic tumor or tumors have appeared elsewhere and are proving chemo-resistant.

Neither of these is a good thing, though I have no real notion which would be worse. "Worse" isn't really a concept that applies in my world anymore. Everything's bad, basically.

My special horror is that Rumsfeld, the tumor at the back of my liver adjacent to the peritoneum, has begun to interpenetrate the peritoneal wall, and that I now have peritoneal cancer as well. This is an issue I brought up with both my OHSU oncology team and my Johns Hopkins oncology team last summer, when I queried whether surgery could best come before chemo specifically to deal with that possibility, just in case this round of tumors proved chemo-resistant and continued to grow. All four oncologists I saw felt that chemo before surgery was a be a more responsible option.

If I was right, if this is peritoneal interpenetration generating the new spike in CEAs, I am going to have to ride myself my hard not to pitch a truly epic shit fit. It won't do any good if I do, after all. And it's not like anything in oncology can be stated with certainty. This is a medical specialty that relies almost entirely on statistical outcomes, and individual disease progression can only be observed in realtime, not forecast with sufficient accuracy.

My best guess now is that we'll stop this chemo, have surgery in early to mid December, and pick up with the newly approved fourth chemo series, which is based around a drug known as Regorafenib. This would put me on chemo through June or July, most likely, and mean the past two months have been a waste of time.

My emotional landscape on this is complex but unsurprising. If we have to abandon Vectibix, that's another year shaved off my already profoundly foreshortened life expectancy. If this is peritoneal disease (only one of a number of possibilities), it will not be the first time I've been right about something very important in which I was then overruled in by medical advice. No matter what it is, my fear and frustration and depression are all multiplied. I won't know much about any of this until the CT scan results are interpreted and released to me, likely not for a week to a week and a half. Uncertainty, of course, is my greatest demon.

Whatever this means, I will adapt and adjust. I always do. But for now, I am very, very upset.

ETA: This post was written while still on the 5-FU pump in the current round of chemo. My apologies for the larger number of typos and misstatements than usual.

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mevennen
User: mevennen
Date: 2012-11-11 15:28 (UTC)
Subject: (no subject)
Jay, I am very sorry to hear this. I will be hoping that things go as well as possible.
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mcjulie
User: mcjulie
Date: 2012-11-11 15:31 (UTC)
Subject: (no subject)
Jay, as always, our thoughts are with you.

This would suck for anybody, but you're talented and smart and charming -- not to mention devastatingly handsome.

It's not fair. But you know that better than anyone.
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threeoutside
User: threeoutside
Date: 2012-11-11 18:09 (UTC)
Subject: (no subject)
*hugs*, dood.
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scarlettina
User: scarlettina
Date: 2012-11-11 15:55 (UTC)
Subject: (no subject)
Oh Jay. Oy. ::hug::
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Leela
User: leela_cat
Date: 2012-11-11 16:40 (UTC)
Subject: (no subject)
there aren't many words for this. Shit, fuck, piss and corruption come to mind. As does Fuck Cancer!

♥ you're in my thoughts.
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shelly_rae: Grumpies
User: shelly_rae
Date: 2012-11-11 17:13 (UTC)
Subject: (no subject)
Keyword:Grumpies
Good luck Jay.
Those elevated counts also reflect the cancer fighting the chemo--I kick out higher counts with each dose too. Could mean the chemo is working.
Be well my friend. We know how hard this really is.
Fricking hard.
Anon
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Deborah J. Ross
User: deborahjross
Date: 2012-11-11 17:14 (UTC)
Subject: (no subject)
So sorry. Sending you strength and much love.

Missed you at Orycon...
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mythicalgirl: frogs
User: mythicalgirl
Date: 2012-11-11 17:21 (UTC)
Subject: (no subject)
Keyword:frogs
I am very sorry to hear this. My thoughts are with you.

Seems today is the day for really crappy cancer announcements. My parents told me this morning that my Mom has cancer. Biopsy and PET scan this week so we can type it and determine next steps.

Fuck Cancer.
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curious Eve
User: curiouseve
Date: 2012-11-11 17:28 (UTC)
Subject: (no subject)
FUCK cancer.

And sucks to feel I-told-you-so in such terrible, ludicrous circumstances.
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it's a great life, if you don't weaken
User: matociquala
Date: 2012-11-11 17:56 (UTC)
Subject: (no subject)
You have every reason to be upset. That sucks.
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beth_bernobich: balloon heart
User: beth_bernobich
Date: 2012-11-11 18:00 (UTC)
Subject: (no subject)
Keyword:balloon heart
Crap, crap, crap, crap.

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Tom
User: voidampersand
Date: 2012-11-11 18:21 (UTC)
Subject: (no subject)
Sorry. I hate it when this happens. It's not wrong for you to feel upset. Uncertainty, of course, is the worst, because you have to contemplate not just one but many possible bad scenarios, and you can't do anything. That's a lot of stress.
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Swan Tower: swan
User: swan_tower
Date: 2012-11-11 18:51 (UTC)
Subject: (no subject)
Keyword:swan
Damn it. I hope, on so many levels, that it is not what you fear re: peritoneal matters.

Fuck Cancer.
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Karen
User: klwilliams
Date: 2012-11-11 20:00 (UTC)
Subject: (no subject)
This so sucks. I'm sorry to hear it, and hope that it's, at the very least, peritoneal cancer on top of everything else.

Karen
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history_monk
User: history_monk
Date: 2012-11-11 20:44 (UTC)
Subject: (no subject)
Damnit. Best of luck!
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a_cubed
User: a_cubed
Date: 2012-11-12 00:32 (UTC)
Subject: (no subject)
Aaaaarrggh. Words really fail me. Just, best wishes, man.
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amphigori: bfly
User: amphigori
Date: 2012-11-12 00:44 (UTC)
Subject: (no subject)
Keyword:bfly
Aw crap. I'm sorry, Jay. I hope the CT scan goes OK.
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Dan/Дмитрий: The Sign at the End of the Universe
User: icedrake
Date: 2012-11-12 01:06 (UTC)
Subject: (no subject)
Keyword:The Sign at the End of the Universe
*HUGS*
Hang in there, Jay.
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mysterysquid
User: mysterysquid
Date: 2012-11-12 01:29 (UTC)
Subject: (no subject)
Damn.
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joycemocha
User: joycemocha
Date: 2012-11-12 02:26 (UTC)
Subject: (no subject)
Crap, crap, crap. Hoping that things go as well as they can.
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Jenny Rae Rappaport
User: eiriene
Date: 2012-11-12 06:04 (UTC)
Subject: (no subject)
Oh, it sucks, it sucks, it sucks. =(

My aunt died of peritoneal cancer in six months flat at the end of 2009/beginning of 2010. It was terrible. I realize this is not a happy comment, I'm so sorry, so upset about this news for you. =(
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Fluttering Things: red
User: moxie_raqs
Date: 2012-11-12 11:05 (UTC)
Subject: (no subject)
Keyword:red
Oh Jesus.

Jay, I'm so sorry. ::hugs:: I wish I was there.
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a_cubed
User: a_cubed
Date: 2012-11-12 12:35 (UTC)
Subject: New way to target liver cancer with chemo
Did you see this BBC News story about a new way to treat cancer in the liver from metastasis, by targetting just the liver? http://www.bbc.co.uk/news/world-20270400
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Angie: New Me
User: aiela
Date: 2012-11-12 13:47 (UTC)
Subject: (no subject)
Keyword:New Me
That sounds a lot like the TACE procedure my sister had: http://www.medicinenet.com/chemo_infusion_and_chemoembolization_of_liver/article.htm

It worked, but it made her so sick they abandoned plans to do 2-3 rounds of it. But it did kill most of the liver tumors she had.

(This time around they did mostly radiation with some follow-up maintenance chemo. We'll see.)
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Angie: New Me
User: aiela
Date: 2012-11-12 13:47 (UTC)
Subject: (no subject)
Keyword:New Me
Jay, I'm so sorry. Fucking cancer. :(
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rarelylynne
User: rarelylynne
Date: 2012-11-12 21:15 (UTC)
Subject: (no subject)
*hugs*

...and... Fuck.

*hugs*
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Jan Holubec
User: doncarloscz
Date: 2012-11-13 17:33 (UTC)
Subject: (no subject)
:(
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User: stremberth
Date: 2012-11-14 16:07 (UTC)
Subject: Prayers
Jay, Im new to this, so thank you for your post. I hope you do well and that this is a small bump in the road. My sister in law is Stage IV Colon Cancer, 4+years since Dx. Surgery and Chemo....CEA running 4ish, elevated to 11 last month and yesterday blood work for chemo showed 21. Alarmed, but they say it could be colitus or Irritable Bowel, she has all the symptoms. Another doc said it could be the equipment, but still ordered PET & Stool. Anyone heard of this elevated CEA? Best to you Jay and again thanks for bringing up the subject.


Edited at 2012-11-14 04:08 pm (UTC)
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Jay Lake
User: jaylake
Date: 2012-11-14 16:18 (UTC)
Subject: Re: Prayers
4ish isn't particularly high clinically, but set against my CEA history, the trend is scary. Good luck and good health to your S-i-L.
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