Wednesday, November 26, 2008

Bad news

It's been crummy around here lately, first freezing and then oozing trickles of rain. So I was jolted this morning when, on the way home from the hospital, a fat, billowy cumulus shifted its relation to the sun and the sky turned electric blue and suddenly everything was bathed in that sharp winter light that heightens the contrast of things. It would have felt like a portent of something, except my CT scan showed progression of my tumors and I have now left the deforolimus study.

I was given a "wet read" -- my doctor looked at the pictures herself, either without the radiologist or only with a quick, informal consult. The news could have been worse; there was no obvious major spread of disease and my lungs look the same as before. But a lymph node crowded against a vein that feeds my left kidney has grown significantly, and the kidney itself has swollen in protest. Some lymph nodes lower on the chain, this time in my lower back, have also grown. So now we move on to the next thing: Consulting with Sloan-Kettering, and beginning another trial or treatment as soon as possible.

I may have a little more to say about this once I've had a time to process what has happened and I receive a formal report of the CT findings.

Laughing and crying

Warning, the following contains too much information.

So my stomach has been screwed up in various ways for two weeks or so now, and it's gotten really bad the last few days. Heading into my CT, I was worried about this because even under the best of circumstances, drinking two liters of banana-flavored barium contrast solution screws up my stomach. There is no worse feeling than being trapped inside the machine, or even stuck way up on the table, and having to throw up or go to the bathroom. So I wanted to let the techs know where I was at: "Sorry to lay this on you, but stomach is feeling really queasy and I've been having a lot of diarrhea, so I just want to make sure that everyone is prepared for what might happen and we can make any necessary cleanup as non-traumatic for all of us as possible."

They laid some special stuff on the table, got me a little basin in case I needed to throw up, and set up the IV. By that time, my stomach was clutched in knots and I took a last trip to the bathroom. When I came out, the nurse somewhat shyly offered me a diaper. But not just any diaper. This thing was fit for an offensive tackle or a morbidly obese fortune teller. Folded up, it was about the size of a baby blanket. As I put it on, I had a sudden vivid memory of when the kids were infants, and how when they moved up to the next size of diapers during that time, the new diapers always seemed so huge... I flashed on a memory of those little distended infant belly buttons, with the adhesive tabs on either side of the diaper almost meeting in the middle. I laughed hard as I stuffed the monstrosity into my pants and went up on the table.

I'm thinking that most of you probably haven't worn a diaper in recent memory. It sucks, obviously. You don't feel sexy. But I vowed at the start of this whole thing that I would not feel ashamed of my body. I haven't lived up to that perfectly, not even close, but a diaper (even one the size of a mainsail) is nothing in the scheme of things. And it still makes me chuckle, particularly because I didn't end up needing it. Even though I have probably said it dozens of times, I've always hated the expression "If I don't laugh, I'd cry" because you need to laugh and cry; both in illness, and in regular life. 

I'm laughing now, a little, and soon I will cry.

Wednesday, November 19, 2008

Encouraging news on Temodar

A new study finds decent news for Temodar with unresectable and metastatic leiomyosarcoma. Although one can't simply extrapolate results from one sarcoma subtype to another, I thought this was worth mentioning because I found very little encouraging news about Temodar/temozolomide for sarcoma earlier this year. (I eventually took the drug anyway and had stable disease for four months or so, which qualified me for the deforolimus trial.)

The protocol used thalidomide as well, but the investigators believe that the temozolomide was the active agent. A quarter of the patients achieved stable disease for at least six months, which I count as a significant achievement given that these folks were pretty sick.

The abstract:

We assessed the efficacy of combined temozolomide and thalidomide in patients with unresectable or metastatic leiomyosarcoma in a phase II single-institution trial. Twenty-four patients were enrolled. Temozolomide (150 mg/m2/day for 7 days every other week) was administered with concomitant thalidomide (200 mg/day), and continued until unacceptable toxicity or disease progression. There were no complete responses and two (10%) partial responses. Five patients (24%) had stable disease for at least six months. Fourteen patients (67%) progressed after a median of two-month treatment. The median overall survival (twenty-two assessable patients) was 9.5 months [95% CI 7–28 months]. There were no treatment-related deaths or CTC grade 4 toxicities. Thirteen patients were dose-reduced or discontinued thalidomide due to toxicity. In conclusion, this combination of temozolomide and thalidomide provided disease stabilization in a subset of patients with advanced leiomyosarcoma. We hypothesize that temozolomide is the active agent in this regimen, and should be further studied.

Tuesday, November 18, 2008

The wit and wisdom of a naughty girl (part 1 of a 586-part series)

Some things my daughter has said recently:

A Jacuzzi. [In response to a question about what she’d like for Christmas.]
A swimming pool then! [In response to the suggestion that a Jacuzzi might be too large for Santa’s sleigh.]
It’s not tight! I just need to stretch it out a little!
You know what I’m not paying attention to? YOU!

By the way, I don't mean "naughty" pejoratively. Though she drives us crazy at times -- dealing with her willful behavior and tantrums can be exhausting -- her spirit is amazing and will, I think, serve her well in life.

Monday, November 17, 2008

Checking in

Nothing much to report, but I wanted to check everyone in on the trial and how I'm feeling. 

It's a little ridiculous, but I've been reticent about talking about my symptoms because of the possibility that I'm receiving a placebo instead of actual medicine. I'd hate to chronicle every daily up and down here and then yank the rug out at some future point. I've also learned not to trust many of my reactions to my own body -- every sensation can seem like a symptom, and my baseline level of wellness isn't terrific. This makes it very difficult for me to say what's going on.

That said, I'm starting to feel like I may be getting the drug. The first three-to-four weeks of the trial were quiet; I felt nothing, basically. Then, almost two weeks ago, a tiny little bump popped up in my mouth, quickly followed by a few more. They didn't ulcerate as miserably as mouth sores usually do, but I was encouraged anyway. I also started to feel even more tired and to have some difficulties with my stomach (nausea, lack of appetite, etc.). The big test will come Nov. 26, when I have my first set of bimonthly scans for this trial.

By the way, Elsa is describing her experiences with the brivanib trial at Sloan-Kettering at her fine blog, Living With A Sarcoma. I'm following this closely, because it is an option that I may pursue at some point.

Thursday, November 6, 2008

The cancer genome

Although there are no immediate implications for cancer treatment, I highly recommend this New York Times article on a groundbreaking new study. The scientists essentially created a personal genome for a person with cancer, then compared the DNA in cancer cells with the DNA in healthy cells to lock in on the mutations associated with the disease. The work is fascinating.
Some of the patient’s mutated genes appeared to promote cancer growth. One probably made the cancer drug-resistant by enabling the tumor cells to pump chemotherapy drugs right out of the cell before they could do their work. The other mutated genes seemed to be tumor suppressors, the body’s natural defense against dangerous genetic mistakes.

“Their job is surveillance,” Dr. Wilson said. “If cells start to do something out of control, these genes are there to shut it down. When we find three or four suppressors inactivated, it’s almost like tumor has systematically started to knock out that surveillance mechanism. That makes it tougher to kill. It gets a little freaky. This is unscientific, but we say, gee, it looks like the tumor has a mind of its own, it knows what genes it has to take out to be successful. It’s amazing.”

Wednesday, November 5, 2008

Writing lessons from Barack Obama

I was struck last night, and again today, by the quality of Barack Obama's brief speech at Grant Park. I was impressed by its disciplined eloquence and found some lessons for my own writing within its construction.

1) Get right into it. Political speeches (and articles and blog posts and bad short stories and...) often start with ritualistic throat-clearings thank-you's to the Jefferson County Rotarians. Not Obama's. He greeted the crowd, then launched in:
If there is anyone out there who still doubts that America is a place where all things are possible; who still wonders if the dream of our founders is alive in our time; who still questions the power of our democracy, tonight is your answer.
2) Make it new. We all know that Obama's election was "historic." The TV commentators reminded us every half second. But what does that mean? Obama took an abstraction vitiated by overuse and made it real by telling the story of Ann Nixon Cooper, a 106-year-old woman whose adoptive mother was a slave. This, granted, is the same impulse that gave us Joe the Plumber and every grating "real person" at a state of the union speech, but look what Obama does with it:
This election had many firsts and many stories that will be told for generations. But one that's on my mind tonight is about a woman who cast her ballot in Atlanta. She's a lot like the millions of others who stood in line to make their voice heard in this election except for one thing -- Ann Nixon Cooper is 106 years old.

She was born just a generation past slavery; a time when there were no cars on the road or planes in the sky; when someone like her couldn't vote for two reasons - because she was a woman and because of the color of her skin.
3) Complete the circle(s). The climax of the speech is set up by Ann Nixon Cooper. Obama uses her life to frame the last century of American history and to recapitulate one of his campaign slogans. Returning so strongly to the "Yes we can" of the primaries rhetorically completes the transition from candidate to president. But Obama is working a variation of his theme, not repeating it. Last night, "Yes we can" was less a rallying cry than a promise. The shift suited the moment: exhilaration intermingled with the sobering knowledge of the work ahead. 
And tonight, I think about all that she's seen throughout her century in America -- the heartache and the hope; the struggle and the progress; the times we were told that we can't, and the people who pressed on with that American creed: Yes we can.

At a time when women's voices were silenced and their hopes dismissed, she lived to see them stand up and speak out and reach for the ballot. Yes we can.

When there was despair in the dust bowl and depression across the land, she saw a nation conquer fear itself with a New Deal, new jobs and a new sense of common purpose. Yes we can.

When the bombs fell on our harbor and tyranny threatened the world, she was there to witness a generation rise to greatness and a democracy was saved. Yes we can.

She was there for the buses in Montgomery, the hoses in Birmingham, a bridge in Selma, and a preacher from Atlanta who told a people that "We Shall Overcome." Yes we can.

A man touched down on the moon, a wall came down in Berlin, a world was connected by our own science and imagination. And this year, in this election, she touched her finger to a screen, and cast her vote, because after 106 years in America, through the best of times and the darkest of hours, she knows how America can change. Yes we can.
Most of us would have been satisfied to close with this new, rounder version of one of our earliest political rallying cries, in the same way that lots of journalists end a story by recapping or extending the story's beginning in some way. But Obama has another move in him, one that works rhetorically and substantively. He turns from Cooper and our past to his daughters and the future:
America, we have come so far. We have seen so much. But there is so much more to do. So tonight, let us ask ourselves -- if our children should live to see the next century; if my daughters should be so lucky to live as long as Ann Nixon Cooper, what change will they see? What progress will we have made?

This is our chance to answer that call. This is our moment. This is our time...