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[cancer] My Terrible, Horrible, No Good, Very Bad Day - Lakeshore
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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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The Green Knight
User: green_knight
Date: 2012-08-16 22:27 (UTC)
Subject: (no subject)
This. So much this. Wishing you all the very best, despite the odds.
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scarlettina: Hug 2
User: scarlettina
Date: 2012-08-16 13:37 (UTC)
Subject: (no subject)
Keyword:Hug 2
How about I tell you I love you? ::hug:: God, this sucks, Jay. I'm with you. We all are.
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a_cubed
User: a_cubed
Date: 2012-08-16 13:45 (UTC)
Subject: (no subject)
casacorona stole my lack of suitable words. It's good that you'll be able to make Worldcon before the treatment kicks in. Hope to see you there.
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barbhendee2: Portrait2
User: barbhendee2
Date: 2012-08-16 13:47 (UTC)
Subject: (no subject)
Keyword:Portrait2
I became very upset when I read your news yesterday, and I couldn't seem to post. I don't know what to say either except that my heart hurts, and I wish I could DO something to help. I am thinking of you.
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MG Ellington
User: xjenavivex
Date: 2012-08-16 13:55 (UTC)
Subject: (no subject)
I am so sorry you are going through this again. ::hugs::
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Lisa Costello
User: radiantlisa
Date: 2012-08-16 14:05 (UTC)
Subject: (no subject)
Cussing loudly and profoundly.
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torreybird
User: torreybird
Date: 2012-08-16 14:08 (UTC)
Subject: (no subject)
Oh no. Damn it. Fuck. Oh dear. You're not dead yet! I'm so sorry.

I'm so sad that this path is yours again.
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mcjulie
User: mcjulie
Date: 2012-08-16 14:17 (UTC)
Subject: (no subject)
I said it before and I'll say it again: Fuck cancer. Love you.



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matt
User: hbergeronx
Date: 2012-08-16 14:19 (UTC)
Subject: (no subject)
Vectibix is an excellent drug, fully humanized. If you haven't already, consider asking about testing the tumor for KRAS, and whether or not full sequencing or exome sequencing of the tumor is an option. Finding out which gene(s) have come into play might tell you a lot about how to smack it down.

There's still lots of hope. Third times the charm. Best wishes to you, and know that you have a lot of people to help support you.
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Autopope
User: autopope
Date: 2012-08-16 14:22 (UTC)
Subject: (no subject)
Well shit.

There's not a lot I can say. Yes, I think getting a second opinion would be a prudent move. Yes, I really hope that fourth line chemo option becomes available down the line, in time for you if you need it. It really sucks, and the 25% five year survival probability is awful, but on the other hand, the longer you survive the higher the probability of new treatment options coming along (what hbergeronx says about sequencing of the tumor springs to mind: if not now, then maybe it'll be feasible in 12-24 months).
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matt
User: hbergeronx
Date: 2012-08-16 20:25 (UTC)
Subject: (no subject)
What autopope said. I suspect with the difficulties you had with GI perforation etc and package indications, your team will not recommend Avastin again (or recommend against Zaltrap :( ) - but if they do, let me know if I can help speed access. Or, if you are more DIY: http://www.genentech-access.com/avastin/hcp

And sequencing, if the sticker price is a problem, let us know and we can find ways to help. There's always http://www.medstartr.com/ or http://www.indiegogo.com/

If nothing else: fuck cancer.

Edited at 2012-08-16 08:40 pm (UTC)
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cathshaffer
User: cathshaffer
Date: 2012-08-16 14:23 (UTC)
Subject: (no subject)
I think a second opinion is a very good idea. It looks like Vectibix has been tested in as a first-line therapy in combination with FOLFOX and FOLFIRI, but you are a third-line patient. You didn't receive Vectibix in the mix in your first-line therapy, because it's new, so it might work. But another clinic may convince you that a different option is a better choice for this fourth recurrence of the disease. Do you remember the name of the drug they're hoping to be approved next year? These drugs, if highly promising, are sometimes available pre-approval through compassionate access programs. I can research that for you.

On a personal level, my heart aches for you and for your family, especially your mother and your daughter. I know this is very hard for all of you, and I hope you can hold onto hope. It is a very good thing that the new tumors are resectable. I was worrying all day yesterday that your docs would tell you the tumors were inoperable. So that's a glimmer of light in the darkness.
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cathshaffer
User: cathshaffer
Date: 2012-08-16 14:35 (UTC)
Subject: (no subject)
Oh, hey, I see that Zaltrap, which was approved last week, showed an overall survival benefit for patients who previously failed an oxaliplatin-based regimen. Zaltrap is also an EGFR inhibitor. Vectibix only showed a progression-free survival benefit, and that in first-line patients only, so maybe ask your docs about that. Zaltrap was also tested in combination with FOLFIRI, which you had a less difficult time with than FOLFOX. Obviously there's a raft of clinical information your doctors have that I don't, but it might be a good thing to run past them.
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A wandering fellow on the long road
User: tsarina
Date: 2012-08-16 14:32 (UTC)
Subject: (no subject)
I don't understand why life has to be so goddamn unfair.
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Rick Moen
User: rinolj
Date: 2012-08-17 23:41 (UTC)
Subject: (no subject)
tsarina wrote:

I don't understand why life has to be so goddamn unfair.

Because reasons.

(I've always considered theodicy the most dead-simple question in all of philosophy, but obviously Views Differ[tm].)

Rick Moen
rick@linuxmafia.com
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Debbie N.
User: wild_irises
Date: 2012-08-16 14:34 (UTC)
Subject: (no subject)
I've been cursing since I read yesterday's post.

I have two very close loved ones in varying stages of colon cancer. One had an off-the-charts good outcome to her first presentation; the other is in the middle of dealing with his second. I know them both far better, and for far longer, than I know you, but I love you all.
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joycemocha
User: joycemocha
Date: 2012-08-16 14:50 (UTC)
Subject: (no subject)
I just don't have much to say. Hugs.
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triskelmoon
User: triskelmoon
Date: 2012-08-16 15:11 (UTC)
Subject: (no subject)
Fuck cancer. I am going to hug the crap out of you at worldcon.
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Bob
User: yourbob
Date: 2012-08-16 15:18 (UTC)
Subject: (no subject)
Fuck cancer and the horse it rode in on.

A thought. Connect with writers and start some collaborations. I know how much writing means to you. get some things started as you head into this, so you can hand off, or get assistance in finishing/working through as you go through this round. Come out the other side of this next year with a "Jay Lake Writing With Friends" body of work.</p>

Make it an anthology. I'm betting you could get enough people together to have three or four authors for each story in anthology.

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threeoutside
User: threeoutside
Date: 2012-08-16 15:26 (UTC)
Subject: (no subject)
Hugs, dood. From what others are saying there are many reasons to keep hoping and fighting.

See you next week!
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Msconduct
User: msconduct
Date: 2012-08-16 15:47 (UTC)
Subject: (no subject)
"I'm sorry" hardly covers it. I will be hoping the universe aligns in your favour.
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User: (Anonymous)
Date: 2012-08-16 15:53 (UTC)
Subject: (no subject)
I'm rooting for you.

I'll see you at Worlcon.

Carrie V.
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beth_bernobich: balloon heart
User: beth_bernobich
Date: 2012-08-16 16:22 (UTC)
Subject: (no subject)
Keyword:balloon heart
*hugs*
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W. Lotus
User: wlotus
Date: 2012-08-16 16:33 (UTC)
Subject: (no subject)
I'm glad the tumors are surgically addressable. I am also heartbroken for you.
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Twilight: Buddies
User: twilight2000
Date: 2012-08-16 16:36 (UTC)
Subject: (no subject)
Keyword:Buddies
First, :::Hugs:::

Second, what yourbob said. And if you don't have someone better at it, I volunteer to coordinate this group write if you go this way.

Third, go kick cancer's ass!

Good thots and good energy headed your way :>
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Jenn Reese: grumpy
User: jennreese
Date: 2012-08-16 16:47 (UTC)
Subject: (no subject)
Keyword:grumpy
I'm so sorry this horrible, miserable thing is happening again. I'll be thinking of you often.
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