[Cancer]
[cancer] My Terrible, Horrible, No Good, Very Bad Day
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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Posted: 5:34 am Thu August 16 2012 |
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Comments
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Oh, Jay. Sending good thoughts and best wishes in your direction.
Dear Jay:
As a fellow atheist, I will curse for starters, and take it from there. I am about an hour from the Texas border,in New Mexico, helping a friend move back east from Fresno. I keep thinking about the time I drove through Texas with you all those years ago, when none of us knew what life wouuld turn out like. None of us figured it would be like this. I always hoped I’d get to see you again, after finding you again. I still hope that will be possible. I still hope you will get better. But this kind of news, and what it realistically means, has become distressingly and apallingly familiar to me. Friday I attended 2 funerals, one for a friend who was dead within 6 weeks of his own cancer diagnosis. On the way home from that, I received news of another friend’s cancer diagnosis, 8 years almost to the day after she helped me get through my own. I used exactly the same phrase you have to describe that day. I guess this is the time to tell you now important you’ve been to me, even after we fell out of touch. Without you, I know I wouldn’t still be here, and I wouldn’t still be laughing to myself about all the experiences we had together, or crying now as I type this. I wish I had the power to do something, anything other than this. You are always in my thoughts. I know how little, and how much that means. Please take care of yourself, my friend.
Alexis
Can I pray AND cuss? Because I believe in covering all of the bases.
Seriously, sending all good thoughts possible your way.
Best of luck. B. and I will be thinking of you.
What can I do to help, Jay?
You are of strong will and intellectual might. You have the support of family and friends, near and far. You have good doctors on your side, and you’ve done the research so you are informed on your options and the pluses/minuses of each. This is all to the good.
I can’t make the ancillary effects not happen. I can’t make the cancer disappear. But if there’s anything else that I can do to make this less difficult (there’s isn’t a damn thing about this that’s easy), I want to do those things.
At the very least, I grasp your hand, my friend. You do not walk alone.
Ah Jay, I’m so very sorry you’re going through all this. I’ll keep you in my thoughts as always, and hopefully in a few weeks I’ll be up to helping you out while you fight this f’ing thing again. xxx
Thinking about you every day with a twinge of selfishness, not wanting to walk that path some day.
But we do what we must, and make the best of it.
I hope and wish for all the best for your outcome. And prayers, such as they are.
I do not like the feeling or intent of hate, but I hate cancer. With a passion. It has take friends and family, or hurt them beyond belief even if they survived.
All my thoughts are with you. Hugs across the e-ways.
Fuck cancer. I’m glad your surgeon feels he can get these. I’m so sad you have to do FOLFOX again- best wishes that it will not be as rough this time around. Thanks as always for being so open about your experience, and for the reminder to tell the people I love how much I love them. I will.
A pox on the cancer (if that’s possible). Fuck.
Let me know if you want a food stream heading your way (now that I’ve figured out how to send the stuff before it goes bad…)
Peace, dude!
I’m so sorry to hear that you’re having to endure this. Cancer is so fucked on so many levels and it always seems to strike the nicest people. I’m sending good thoughts your way and cursing on your behalf too.
“Tell someone you love them.”
Okay. I’m telling you. My life has been graced by your presence and friendship.
I’m also cursing. And praying. Every little bit of good energy your way helps, right?
Thank you, sir. Very much.
This witch is gonna pray for you.
Let’s kick this cancer into the next universe where it suffers from being constantly eaten by carrion.
Hi Jay – so sorry to hear this. I’m not a prayer, but I’ll be thinking good thoughts and hoping for the best. Take care.
From South Africa, my best wishes. I’ll pray. And I’ve bought Green and Endurance
I am hoping you find the endurance for the strenuous road ahead. “Tell someone you love them.” That brought a tear. And I will do just that. Hang in, hang on.
I am glad you are getting to two more cons before entering the cancer foxhole. Very best wishes – I hope chemo and the next surgery are tolerable.
Jay – My mother went through what you are about to experience (4th recurrence) at age 82. She got through this one. I saw you last month in Vancouver, and you looked fantastic. Healthy and strong.
The liver is an amazing organ. Mom lost 40% of hers and it grew back (if you put that in a sci fi novel, people might not believe it, but its true). Keep your teeth sharp and your ass-kicker attitude strong. Don’t quit the fight.
My thoughts are with you and those you love.
I’m thinking of you and adding you to my daily prayers, Jay. You’re a dazzling writer and an irrepressible soul, and I refuse to count you out.
Fuck cancer.
I continue to keep you in my thoughts, and follow your blog. I’m not one to pray much, but I wanted you to know that all the positive energy and luck I can muster I am thinking in your direction. If it does even the good of being even an iota of comfort, good.
I don’t know what else to say, except I’m so fucking sorry that this shit keeps happening for you.
When I read the news, I cried. I don’t know you that well, but we had an immensely enjoyable conversation one night at Kennedy School, sharing chemo war stories. I hate to think of anyone going through that again.
I had to cancel a CT scan and mammogram this week due to illness. This is going to encourage me to reschedule ASAP. In the meantime, I wish the very best for you. Don’t give up the fight. You are an inspiration to us all.
Been doing some more thinking. I was on FOLFOX, the 5FU was given through the port en bolus. It was pretty rough in my case. I would suggest asking about a regimen using a 2 day pump, which is more gentle on the system. I ended up switching to Xeloda (Capecitabine), which is standard of care in Europe due to lower complications with identical outcomes. I found the impact more manageable, and prefer its sustained dosage level over the 5FU. Preventive measures to avoid rashes on hands and feet are crucial before symptoms start – I used cow udder balm, and managed ok. Oxaliplatin is rough, but I think, you have been that way. I had to suspend it due to onset of serious neuropathy and vision disturbance. It buys you about 3%.
For some reason, I avoided medical marihuana. If I have go that way again, I will use it to reduce the terrible malaise (which seems always under reported), and improve appetite. There might also be some tumor reduction attributable to it, but the evidence is spotty.
The field is changing rapidly just now. I would definitely get a second opinion. It’s not that expensive. I ended up getting into Stanford with Dr. Fisher, who is one of the best in the Bay Area. He was Steve Job’s physician after he had delayed treatment. He can be hard to get into, but their workup for a consult is first rate and thorough.
Here are the top sites based on the Cancer Info Network corroborated by some other reports:
- Memorial Sloan-Kettering Cancer Center, New York, New York
- University of Texas, M. D. Anderson Cancer Center, Houston, Texas
- Johns Hopkins Hospital, Baltimore, Maryland
- Mayo Clinic, Rochester, Minn.
- Dana-Farber Cancer Institute, Boston, Mass
- Duke University Medical Center, Durham, N.C.
- Stanford University Hospital, Stanford, Calif.
- University of Washington Medical Center, Seattle, Wash.
- University of Chicago Hospitals, Chicago, Illi.
- UCLA Medical Center, Los Angeles, Calif.
- Roswell Park Cancer Institute, Buffalo, New York
UCSF also has great outcomes. If I have a relapse, I will head to M.D. Anderson or Sloan Kettering first, otherwise Stanford.
I would do more research, but for the time being keep the planned course.
Hey, Mr. Lake. I lost my grandfather to cancer a year ago and my cousin was diagnosed with lymphoma a few months after that. It’s hard, but I do wish you all the best. I’ll be praying for you. You’re a great writer and a great person, and I will forever cherish the day I bought Green from the used books section.
I hope you get through this, sir.
Lots of love from the Philippines.
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