[cancer] New CEA levels in, news grows grim - Lakeshore — LiveJournal
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Jay Lake
Date: 2013-07-13 05:01
Subject: [cancer] New CEA levels in, news grows grim
Security: Public
Tags:cancer, health, personal
New CEA levels came in yesterday. Not good.

2013_07_12 CEA_annotated
  1. Initial colon cancer presentation

  2. First metastatic presentation, a single-focus, single-site tumor in my left lung

  3. Second metastatic presentation, a single-focus, single-site tumor in my liver

  4. Third metastatic presentation, single-focus, multi-site tumors in my liver

  5. Fourth metastatic presentation, addition tumor in my liver while on pre-operative chemotherapy for third presentation

  6. Fifth metastatic presentation, multi-focus, multi-site tumors in my diaphragm and omentum

  7. Sixth metastatic presentation, multi-focus, multi-site tumors in my liver, lungs, and omentum

  8. Current testing (medical imaging to come on 7/22)

I measured 30.6 in a blood draw this past Monday. Back in early May when I was diagnosed as terminal, the CEA level was 9.2, which was considered fairly alarming. The highest I've been before this is 10.9, during my second metastatic presentation.

Due to wide variety of idiosyncratic responses, CEAs are not considered diagnostic. They're guideposts at best. In my case, however, while I've had false negatives (ie, low CEAs while carrying tumors), I have never had false positives (ie, high CEAs without tumor activity). My medical history strongly suggests that a highly elevated CEA like this is indicative of extensive tumor activity.

As my oncologist says, this is the wrong direction. These numbers strongly imply that the Regorafenib is ineffective, as its desired effect was a slowing or halting of tumor growth. That would translate into flat CEAs, or at most a modest gain.

If the imaging bears out this trend, I'm definitely on the short clock to mortality. Well less than a year.

We'll know more when I receive my next CT on 7/22, and next meet my oncologist on 7/24. At the moment, I see no cause for optimism.

This is very frightening. I'm tired of being scared all the time.

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User: mevennen
Date: 2013-07-13 12:07 (UTC)
Subject: (no subject)
I am very sorry to hear this, Jay.
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User: deborahjross
Date: 2013-07-13 17:15 (UTC)
Subject: (no subject)
So very sorry to hear this. The phrase "forlorn hope" comes to mind -- I've been reading Cornwell's "Richard Sharpe" series -- meaning that first assault on a well-defended bastion, throwing enough lives at the barrier to bring it down. And, of course, most of those poor souls didn't make it. They were all volunteers, all with nothing to lose. We, on the other hand, don't get a choice. We just do the best we can with what time we have.
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User: martianmooncrab
Date: 2013-07-13 17:52 (UTC)
Subject: (no subject)
if the meds are not working, perhaps they will suggest you not take them, which would stop the side effects for now.

trade offs, its all trade offs now. *sigh*
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it's a great life, if you don't weaken
User: matociquala
Date: 2013-07-13 18:50 (UTC)
Subject: (no subject)
This is not the news anybody wanted.
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Submarine Bells: backlit
User: submarine_bells
Date: 2013-07-13 21:42 (UTC)
Subject: (no subject)
I don't know what to say. I wish things were otherwise.
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User: elisem
Date: 2013-07-14 17:50 (UTC)
Subject: (no subject)
Well, fuck.

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User: fjm
Date: 2013-07-15 12:46 (UTC)
Subject: (no subject)
Just caught up. Sending you lots of virtual hugs and wishing I could be there to give you real ones.
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