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[cancer] Yesterday's visit to the oncologist - Lakeshore
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Jay Lake
Date: 2013-11-12 05:58
Subject: [cancer] Yesterday's visit to the oncologist
Security: Public
Tags:cancer, death, health, personal
We saw my medical oncologist yesterday to discuss the CT scan results and review next steps.

One thing I learned which was not previously known to me is that I now also have a tumor in my spleen. This joins the roughly two dozen tumors in my lungs, liver and peritoneum. This isn't considered a new tumor as a retroactive review of my September scan shows a faint shadow on my spleen which developed into an identifiable tumor on this scan.

My oncologist's opinion is that the Regorafenib is losing its effectiveness, and therefore we should be actively looking for a clinical trial to engage. We are not yet abandoning the medication until we know I am lined up for a clinical trial. They characterized the usage of the drug going forward as a 'bridge' to the next treatment step.

They have a query into the trials office at my treating hospital to see where I am in line for their current clinical trials. There is apparently at least one Phase One clinical trial there for which I am a candidate. Once we hear from them, I will make an appointment with the oncologist who coordinates the trials.

We will also be looking at Phase One and Phase Two trials across the country, through the good offices of my team of science advisors. My oncologist was a bit dubious of this, with respect to the resources expended to participate in a
distant trial, but we mentioned that the trials coordinator had previously been supportive of the idea of me enrolling in a distant trial if I were a strong candidate, and the hospital being willing to consider supporting that effort as needed.

We brought up two specific trials which had come to our attention recently, a mistletoe extract trial at Johns Hopkins, and a PI3K/AKT inhibitor-Regorafenib trial at Virginia Commonwealth University. My doctor was very skeptical of the mistletoe trial, specifically because of the lack of understanding of the molecular basis of the treatment. They felt the PI3K/AKT inhibitor trial would be of little value to me because I do not have the relevant PI3K/AKT mutation.

I also asked about my life expectancy. My oncologist reluctantly confirmed six to nine months, barring a trial providing additional relief as the Regorafenib has over the past six months.

Next steps are:
  • A followup with my medical oncologist on 12/11.

  • An appointment with the trials coordinator once we know where I am on the waiting list for trials at my treating hospital.

  • An appointment with my palliative care doctor on 12/30 to follow up on the sleep medication questions (which we will be pursuing in the mean time by email with them) and next steps in palliative care.

  • Our best efforts to locate additional trials for which I am a strong candidate and determine if I can receive treatment.


I am angry, scared and frustrated. This is the world I live in, though not for too much longer, it seems.

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chris_gerrib
User: chris_gerrib
Date: 2013-11-12 14:49 (UTC)
Subject: (no subject)
Damn shitty news, sir. I don't know what else to say except I'm very sorry to hear this.
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mcjulie
User: mcjulie
Date: 2013-11-12 15:19 (UTC)
Subject: (no subject)
That sucks. Fuck cancer.
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Deborah J. Ross: hands
User: deborahjross
Date: 2013-11-12 16:55 (UTC)
Subject: (no subject)
Keyword:hands
Oh, Jay.
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alumiere
User: alumiere
Date: 2013-11-12 17:03 (UTC)
Subject: (no subject)
It seems to keep piling on... I'm sorry.
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threeoutside
User: threeoutside
Date: 2013-11-12 17:32 (UTC)
Subject: (no subject)
Wish I could offer more than hugs. Sending you lots of those, and for Lisa, too.
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martianmooncrab
User: martianmooncrab
Date: 2013-11-12 18:58 (UTC)
Subject: (no subject)
*hugs* for all the good that does, but damn...

does one have to be Druidic for the mistletoe to work?
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Swan Tower
User: swan_tower
Date: 2013-11-12 19:35 (UTC)
Subject: (no subject)
Or perhaps start taking it in the Christmas season?

Hugs, Jay. And a big old "fuck you" to cancer.
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fledgist
User: fledgist
Date: 2013-11-12 19:39 (UTC)
Subject: (no subject)
All I can do, Jay, is offer you and Lisa virtual hugs. I hope you enjoy the hell out of every single day.
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Rick Moen
User: rinolj
Date: 2013-11-12 23:10 (UTC)
Subject: (no subject)
If it's any help, Jay, you've been consistently making the best possible choices given the bad hand dealt out. Might be just me, but I take comfort from having at no point screwed up when the horrific hits.

I'm hoping that you'll manage to set yet more records for outliving this thing, with help from clinicaltrials.gov and the like.

Best,
Rick Moen
rick@linuxmafia.com
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mmegaera
User: mmegaera
Date: 2013-11-13 00:35 (UTC)
Subject: (no subject)
This was so not what was supposed to happen.

"Fuck cancer" is to what your cancer needs as a rowboat is to the Titanic.
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The Warrior Queen of Awesomeland
User: porcelain72
Date: 2013-11-13 01:22 (UTC)
Subject: (no subject)
I wish you peace of mind and heart, and I'm very sorry.
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Lethran: Balls
User: gwyd
Date: 2013-11-13 04:49 (UTC)
Subject: (no subject)
Keyword:Balls
Shit. I hope a good trial turns up.
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Lioness
User: elisem
Date: 2013-11-13 10:46 (UTC)
Subject: (no subject)
*sits by you and makes shinies, chatting or not as you prefer, and generally being in solidarity*
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