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[cancer] I have seen the future brother, and it is murder - Lakeshore
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Jay Lake
Date: 2013-02-05 05:01
Subject: [cancer] I have seen the future brother, and it is murder
Security: Public
Tags:cancer, family, health, personal, radiantlisa
I saw my medical oncologist yesterday. Dad and Lisa came with me, because of the increasingly complex situation.

The basic takeaway is that we are no longer treating me with the expectation of a cure, but rather we are treating me for life extension and quality of life.

Details:

The tumors in my lesser omentum and my thoracic diaphragm are most likely a spread from the liver, rather than a new set of systemic metastases. (This is good news.) Beyond that, things are pretty much as expected.

I will have a CT scan every two months to check for new metastases. It is reasonable to assume that they will appear fairly quickly, perhaps in a six-month time frame. In the mean time, as of early March I will resume Vectibix infusions every two weeks, but we are abandoning the FOLFOX infusions as ineffective. This means chemo will be two hours every other Friday afternoon, rather than all weekend with a Monday recovery day. I will also be a lot more energetic and less fatigued, and possibly my writing window will stay open these next months. The Vectibix will stay in play indefinitely, until my next metastasis, so I'll be wrestling with extreme photosensitivity and terrible skin conditions for some time to come.

When the next metastases appear, we will have another round of surgery, then switch to Vectibix and Irinotecan. The mets after that will be addressed with further surgery and infusions of Regorafenib. After that, we are out of chemo options except for the possibility of enrolling in an experimental study somewhere.

The game is over either (a) when I metastasize in a location which is not surgically addressable, such as my liver stem or my lymphatic system, or (b) when we run out of chemo options to treat a new metastasis with. At that point, I will go terminal.

There is still some modest hope that the genomic sequencing will produce a new option which may lead to a cure. Likewise, we are seeking a second opinion at a major national cancer center (not yet confirmed), and there is some hope to be had from the possibility of successfully participating in a study. Frankly, the odds of any of these succeeding are small, but I am not giving up.

I continue to work with Dad on planning for disability leave and end-of-life issues, but that is planning ahead. I am not terminal now, and won't become terminal until one of the conditions mentioned above is met. That could be in a few months or a few years. Once I become terminal, we are probably looking at six months to a year.

On Wednesday (tomorrow) I am seeing my surgical oncologist for a post-operative followup, but other than some administrative issues around the genomic sequencing results, I don't expect any new information from that visit.

I have seen the future brother, and it is murder.

Meanwhile, life is for living.

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W. Lotus: Peaceful
User: wlotusopenid
Date: 2013-02-05 13:33 (UTC)
Subject: (no subject)
Keyword:Peaceful
I would normally think having a plan makes things seem less overwhelming, but I don't know if that would be true in this case. I do agree, however, life is for living. I am glad you are doing everything you can to live for however long you have.
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lake_effected
User: lake_effected
Date: 2013-02-05 13:53 (UTC)
Subject: (no subject)
Wishing you all the best possible.
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mevennen
User: mevennen
Date: 2013-02-05 14:14 (UTC)
Subject: (no subject)
Seconded.
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barbhendee2: Kitten and Chick
User: barbhendee2
Date: 2013-02-05 14:27 (UTC)
Subject: (no subject)
Keyword:Kitten and Chick
Jay, if I'm reading this correctly, you won't have to undergo any chemo in February? Do you have this month off from chemo treatments?
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Jay Lake
User: jaylake
Date: 2013-02-05 14:29 (UTC)
Subject: (no subject)
Yes, I am off chemo until March. At that point, I will go on a reduced chemo schedule.
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Matthew S. Rotundo: Radioactive
User: matthewsrotundo
Date: 2013-02-05 14:33 (UTC)
Subject: (no subject)
Keyword:Radioactive
Continuing to hold out hope that the sequencing will turn up something useful.

You don't mind, do you?
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mcjulie
User: mcjulie
Date: 2013-02-05 14:40 (UTC)
Subject: (no subject)
Heavy news. But I continue to hold out hope for a statistically unlikely favorable event.
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chris_gerrib
User: chris_gerrib
Date: 2013-02-05 14:53 (UTC)
Subject: (no subject)
Well, damn. That's pretty lousy news.

I don't know what to say other then you have my best wishes and hopes.
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joycemocha
User: joycemocha
Date: 2013-02-05 15:39 (UTC)
Subject: (no subject)
Well--damn. Complexity exists.

At least with the upcoming regime, you should have the possibility of more time to write, which is what you need for yourself.
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threeoutside
User: threeoutside
Date: 2013-02-05 15:54 (UTC)
Subject: (no subject)
"So live."

*hugs*
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Keikaimalu
User: keikaimalu
Date: 2013-02-05 15:55 (UTC)
Subject: (no subject)
I'm really sorry the cancer has taken this turn, Jay. What a crappy roll of the dice.

I wish you as much life as you can have, and as much happiness, peace, and normalcy as possible during that time. May those you care for and those who care for you also find peace and strength.

Some things are hardest for the patient; some things are hardest for those around the patient. I hope all of you find what you need, and live as fully as you can.
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torreybird
User: torreybird
Date: 2013-02-05 16:05 (UTC)
Subject: (no subject)
"That could be in a few months or a few years. Once I become terminal, we are probably looking at six months to a year."

Goddamn. Good thing you have cultivated a habit of living fully and writing fast. Very, very good thing.

I hate how few hours we get on this planet to be good at what we do, and we get even fewer with fucking cancer.
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alumiere
User: alumiere
Date: 2013-02-05 17:12 (UTC)
Subject: (no subject)
I'm sorry to hear this, but the last line is perfect. Be as well as you can.
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Shefa
User: shefa
Date: 2013-02-05 17:26 (UTC)
Subject: (no subject)
I'm glad you have a team that is so collaborative and respectful of your wishes to continue to be aggressive and to pursue both second opinions and potential options even if they are atypical. I'm holding out hope for the gene sequencing because I can and why not?

Mostly, though, I'm sorry that you're having to go through this. My good thoughts and wishes are always going out to you, Jay.
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MG Ellington
User: xjenavivex
Date: 2013-02-05 17:57 (UTC)
Subject: (no subject)
Cancer continues to suck. I'm sorry.
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Swan Tower
User: swan_tower
Date: 2013-02-05 18:46 (UTC)
Subject: (no subject)
If all I can do is cross my fingers, I will cross them as hard as I can.
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beth_bernobich: balloon heart
User: beth_bernobich
Date: 2013-02-05 20:39 (UTC)
Subject: (no subject)
Keyword:balloon heart
*hugs*
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martianmooncrab
User: martianmooncrab
Date: 2013-02-05 20:55 (UTC)
Subject: (no subject)
You have been the exception to the rule, I want you to continue with that..
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Debbie N.
User: wild_irises
Date: 2013-02-05 22:16 (UTC)
Subject: (no subject)
That sucks, man.

I think of you every day.
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daveraines
User: daveraines
Date: 2013-02-05 22:50 (UTC)
Subject: (no subject)
I hope you don't mind if I pray for a miracle.

Also I remember Heinlein's _Glory Road_ and the motto of Oscar's sword: "Dum vivamus, vivamus" (I don't have the book and I'm not sure I've got the tenses right...) At any rate the translation was, "While we live, let us *live*."

And is the transition between those two paragraphs a segue that has ever been made before?
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anghara
User: anghara
Date: 2013-02-06 00:12 (UTC)
Subject: (no subject)
SUCKS. Sucks sucks sucks. I am not the praying sort, Jay, but I continue to send all the best vibes that I can, and just hope for hope.
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Leela
User: leela_cat
Date: 2013-02-06 02:11 (UTC)
Subject: (no subject)
Just Fuck Cancer... okay?

And enjoy your life, live it to the fullest possible. You've brought pleasure into mine, and for that I thank you.

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Karen
User: klwilliams
Date: 2013-02-06 02:23 (UTC)
Subject: (no subject)
Oh, fuck. But yes, life is for living, and you live it so well.
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emmainfiniti
User: emmainfiniti
Date: 2013-02-06 03:13 (UTC)
Subject: (no subject)
Hugs.
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Lethran: Crotian
User: gwyd
Date: 2013-02-06 08:13 (UTC)
Subject: (no subject)
Keyword:Crotian
I have nothing clever to say. My best wishes to you and yours.
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Msconduct
User: msconduct
Date: 2013-02-07 02:10 (UTC)
Subject: (no subject)
I came across a cancer trial recently which I thought might not be on your radar as the drug has been developed in New Zealand. I know you're not looking for trials right now, and they wouldn't be ready for your kind of cancer at the moment anyway, but I mention it just to flag it in case you might be interested at some other point.

The drug, PR610, is masked to affect cancer cells only. It targets a growth receptor on cancer cells and shuts it down. It is designed for use in low-oxygen envornments (ie solid tumours). Phase 1 is a trial on non-small cell lung cancers, but if that is successful they will tailor the drug for other solid tumours. Trials are going forward both in NZ and in the US. Here's the press release:

http://www.auckland.ac.nz/uoa/home/news/template/news_item.jsp?cid=514899

Obviously this would be no magic bullet for you given that it's targeting one tumour at a time rather than stopping whatever seeding process is going on, but I thought it might prove an avenue to explore (far, far down the track, if at all, hopefully) if you develop a tumour in a difficult site.
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Jay Lake
User: jaylake
Date: 2013-02-07 02:16 (UTC)
Subject: (no subject)
Thank you.
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