Thursday, July 20, 2006

7.20.06, Restaging #2: Results

“What we know?”

Based on eight (8) weeks of continued GTX treatment and general clean living ☺, some of my cancer is growing / spreading, in what are called “heterogeneous tumors”; some remains stable. Overall, the big picture result is a “mixed response”; the best-case description could be calling it a “stable disease” because the growth is on the minimal side. The more serious description would be “partial progression.” Another option — fortunately not one that applies today — would be when you have growth by 20%, then it would be labeled as “clearly progressive.” So to borrow a title I’ve used once for a post already, “it could be worse.”

[Again, if anyone wants to get in touch, for today at least, please just send email. I'll likely ignore my phone. -Mr. J]

That is information I already had, i.e. the terminal aspect which this emphasizes, but the past eight weeks with no major catastrophes apparently have bred a sense of contentment, if that is possible. If I’m not shitting blood and puking up all day, heavy sweats, pain, hallucinations, then I’m doing OK, seems to be what happened. It’s never been that bad, and the conscious / unconscious mind will do what they must. So today was a reminder: don’t get cocky, keep your eyes wide open, finish up all your paperwork, & put on clean underwear.

In plainest English: we could have heard today that my disease is better, stable, or worse. It’s worse. Nothing divides perfectly into two or three options like that, but to put it very directly. We quoted Furio once before didn’t we, “Cancer don’t respect nothing.” It just won’t go away.

“How we know?”

There are three main pieces of evidence, three visible changes to support the “mixed response” conclusion; that is, they show the cancer has begun to grow despite the GTX therapy.

1. The original tumor in my pancreas has grown again, by 4 mm. (Their margin of error when they “take the pictures” is 2.5 mm, actually, so we could quibble and debate, and a serious Glass-Half-Fuller might say it could only “really” be 1.5 mm of new growth, etc.)

2. Of the liver tumors, one pre-existing tumor grew from 12 to 18 mm. The rest were stable.

3. There is one new tumor in the liver, of about 6 mm.

There’s your “mixed”; the other pre-existing liver tumors are the same and my lungs look the same as before.

“What will I do? What are the options?”

These questions could be answered or discussed exhaustively and you’d have a 20-page post. So I’ll spare you all the options & deliberations and put it in short form. I’m going to continue with the GTX regimen for six weeks, then restage again. The disease progress hasn’t been great, quality of life has been pretty good, so GTX might help for a while. Next restaging, do it all again.

There are only so many FDA-approved drugs out there for pancreatic cancer, and today I learned my cancer is beginning its rebellion against some part of the GTX group, administered in that order (the order is important, as shown in a study by Dr. Robert Fine at the Columbia Medical Ctr, I could post a link to a video of his presentation on this, in which positive results seem to be had by changing the order of those three drugs: remember, G = gemcitabine, T = taxotere, X = xeloda). Dr. Fine did some pioneering work with GTX, so he’s one we’re watching. My doctor, Whiting, is going to check with Fine to get more details on the results of the order-switching studies; then there is a chance I might try that as well.

Once the cancer outsmarts the current three drugs; we can line up three more, or a combination of two more, and try that. That’s the next treatment phase. Sad but true, the cancer will outsmart those at some point also; at that point, I can jump into an early-phase trial and test experimental drugs. Entering a trial study for treatment would be the third phase. Some time might be bought. Frankly speaking, however, I need to finish my living will, powers of atty, will, etc. before that time.

If I had to use only one word to describe today, it would be — sobering. More words, angering, frustrating, fucked up, sad. You choose.

Thanks to Ted for coming along today, taking notes, being there. And thanks to rest of you who have been supportive, you know who you are so I won’t make a list.

In a sense, we already knew this, right? It's the same news, just a reminder, that the egg timer is still going, or rather, the reminder is that it is an egg timer, not a Seiko perpetual calendar watch.

[below, left overs from my first "wait a bit" post...]
I just got back from the doctor's, results are in. It will take me some time to call and talk to my mom and then to type up some cohesive and balanced report of how things went — please be patient. All family, please hold on and either get news from her or wait till I post it here.

Also, all of you who have called or texted, you're great, all the positive vibes are well received. In light of potential phone insanity, however, if I could ask everyone to please hold off on both calling and texting that would be a big help to me right today. I need time to get this down, and then posted, then a little wind-down time would be nice. My request is not so much a reflection of the results, just that restaging day causes lots of anticipation, you know. Please email if you want to get in touch.

The Results: yes, it's really cancer; and yes, even though things seemed to have gone well for 8 weeks or so, it is terminal. Same scenario.

Specifically, mine is what they call a "mixed response." That is, some stability of the cancer, some growth of the cancer, depending on the location. Of course, appropriately the harsh reality that we don't always get simple "black" or "white" answers. Mixed response. The growth was not really aggressive, which is the best news; however the bad news is that some of the cancer is already responding against this type of chemo (in other words, all growth is bad). I'll explain it all later today. Patience.


madame x said...

Sweetness: I'm one of the over-callers. Am at Redline, can drop by with treats any moment, anytime. otherwise will not pester.

big hearts to you, mme x

Mr. Jones said...

Thanks mme x - sadly the responsibilities of the blog, to be followed by emotional responsibilities, keep me from treats. Talk soon though. Write like hell. -Mr. J

Slarry said...

Spot, Spot, Spot:
Damn, Damn and more damn.
We are just going to have to keep fighting and figure
out something to do to with this pesky, pest.
I'm trying to be patient ....

I want to bring treats with Ms. Gill, when you are more settled.
Thinking of you, Mr. Man
And loving you, as always, all the more.


Anonymous said...

son saeng nim,
you're brave and honest - nothing but respect.
you've been fighting like hell and it sucks that just sucks. i wish for different - a miracle. i wish this never happened to you of all people. people always say that, don't they? but sincerely, with you, nomuna akawo...not you :(
and still, you're living a fuller life than most; writing, reading, composing. i hope for no pain and peace in your life.
please be well-

tossing salads said...

greetings brother. just to let you know i have 'mixed' feelings about all of this. but overall am hopeful. need to let you know another reason why im more on the hopeful side. you know where i work. and something that ive noticed is that so many of our patients go home, come back, go home. it seems like a continuous loop. and its mostly secondary illnesses that bring them here not the main cancer. that you havent been hospitalized, i think, with something extra is a bonus. so that is what im thinking. thank you to all those that love and continue to support and beautiful human being. spot keep fighting, im there with you.

david said...

leaving this far away place tomorrow morning, two and a half hours out, Fuji will be away there to the right of the aircraft. At some later point crossing your longitude, at some other point moving along the northern Pennsylvania NY border, the route these days, it seems, too far to the south for a glimpse of the Fingers. GTX. Dr. Fine. Intials, a name; chemicals, a doctor. Checkin' in. Grateful. Awed. Hoping for the very best for you in all this angering, frustrating, fucked up, sad business.