In California

I'm going to be in California for the next couple of weeks, logging beach time, eating Mexican food, and trying to focus on the kids. Posting will be light, but I'm sure I'll pop up at intervals.
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Things have been quiet in life, as on the blog -- after an annoying battle for pre-authorization for cycle 2 of Temodar (why does RESTAT put up roadblocks when clearly, obviously they're going to have to pay?), I'm back on chemo.

The tentative plan at this point is to alter the dosing scheme for the drug so that instead of eight-week cycles (six weeks on, two weeks off), I'll do four-week cycles (three on, one off). The idea is to start racking up those cycles faster because Ariad's SUCCEED trial requires four cycles of stable disease or response before they enroll you. I'm not completely sure I want to be in this study at this point -- it's placebo-controlled, and I'd really hate to get a placebo -- but I want to have as many options as possible. So we've magicked the same dose into two cycles instead of one. I've got to read up on this to make sure I'm not giving anything up, but it makes sense.
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Shout out to Youngstown, Ohio -- ongoing no evidence of disease on a pelvic epithelioid sarcoma! Whoo-hoo!
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Next post topic: fish tacos.
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Potential future post topic: The mounting crapiness of JetBlue. I hate to dis them -- the title of this blog is in part a reference to them, and if I ever do a logo the suggestion will be even clearer -- but the sad fact is that they have outgrown many of their key airports and their customer experience is horrible. I may have to eat 50 fish tacos to recover from the trip out.

'Most cancer doctors avoid saying it's the end'

A new study finds that only one-third of terminally ill patients had discussed end-of-life care. Those who did, the study found, were no more likely to become depressed than those who did not, and were less likely to spend their final days in hospitals on life-support equipment.

An AP article on the study explains:

The new study is the first to look at what happens to patients if they are or are not asked what kind of care they'd like to receive if they were dying, said lead researcher Dr. Alexi Wright of the Dana-Farber Cancer Institute in Boston.

It involved 603 people in Massachusetts, New Hampshire, Connecticut and Texas. All had failed chemotherapy for advanced cancer and had life expectancies of less than a year. They were interviewed at the start of the study and are being followed until their deaths. Records were used to document their care.

Of the 323 who have died so far, those who had end-of-life talks were three times less likely to spend their final week in intensive care, four times less likely to be on breathing machines, and six times less likely to be resuscitated.

About 7 percent of all patients in the study developed depression. Feeling nervous or worried was no more common among those who had end-of-life talks than those who did not.

WebMD offers more coverage of the study here.

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So why are two-thirds of patients not having these conversations? My guess is first that many patients don't want them; everybody faces death differently, and cancer patients in particular carry a lot of excess linguistic and cultural baggage about "fighting" their disease. (Do people "fight" kidney disease or congestive heart failure?) In person, I often joke about the "I'm gonna beat this thing!" complex that stops some people from acknowledging the seriousness of their disease until the very end. I've written a little about how metaphors can support and undermine coping here (read the comments).

And, of course, we all know that many doctors will squirrel out on this kind of stuff out of misguided notions of what's good for their patients and a natural human desire to not say difficult, potentially upsetting things. (Physicians are also notoriously bad at estimating prognosis (see this tasty post for a link), often with a bias toward overestimating a patient's survival; perhaps they convince themselves they'll have time to break the bad news later?)

My thoughts: I wasn't surprised that terminally ill people benefited from frank conversations with doctors about end-of-life care. I was surprised so few people had those conversations.

My preliminary position is that doctors should understand that their patients are hugely resilient and capable of absorbing difficult truths. Obviously, timing is tricky and a doctor should never force his view of the situation on a patient, but tactfully acknowledging the elephant in the examining room is more likely to relieve stress than generate more.

'Cancer as a Disease, Not a Death Sentence'

My hope at this point is to follow the route described in this article -- hopping from therapy to therapy and living with the disease for as long as possible. There's no direct sarcoma connection in the piece, but some of the drugs directly mentioned (Gleevec) or inferred (new kidney cancer agents) are applicable to or being tested for some sub-types of soft-tissue sarcoma.

Jane Brody's article on new ways to control cancer is here:

Through a better understanding of factors that distinguish cancer cells from normal ones and the development of more specific treatments that capitalize on those differences, cancers that just a decade ago would have been rapidly fatal are now being controlled for years while the patients conduct near-normal lives.

Although these cancers may never be curable, they can often be controlled for long periods by a succession of treatments. When one therapeutic approach no longer works, another one that has come along in the meantime might stop the disease from progressing, at least for a while.

Even patients whose cancers were already metastatic — spread beyond the site of origin — at the time of diagnosis are benefiting from this sequential approach....

In memoriam, Brandyn Beck, age 10

Brandyn Beck, a Indiana 10 year old, died at home in March of epithelioid sarcoma. If I read his site correctly, he was diagnosed with metastatic ES (a primary tumor on or near the thyroid, mets to the lungs), around June of 2007 and was treated with surgery, proton radiation and chemo. He was good-natured boy, fond of cycling, skating and almost anything having to do with wheels, most especially (I infer from his MySpace page) if those wheels were Harley-Davidson.

Brandyn's blog, which includes a newspaper article about his illness as well as his obituary, is available via MySpace. 

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This begs a question: Why do I do this to myself? To you? 

Although obituaries, particularly of the very young, are tough reading, one of the many unfocused goals of this site is that it should serve as a repository of memories -- my own, of course, but also those of others I run I across who have endured this terrible illness. 

For me, then, printing an obituary is a gesture of solidarity and respect to the dead and their loved ones. A good obit can also serve as inspiration through illness (as in this account of Nicole Morgan's emphatic bravery and loving family). They also show the terrible scope and diversity of this disease, not that we need reminding of that. 

THE SICK GUY MAKES A SERIOUS REQUEST: All that said, I'd much rather write about you or your loved one while you are alive. 

If anyone is game to tell me their story to be presented here for an audience of hundreds, please let me know. I'd love to profile you and squeeze a little more mileage out of my journalism degree. I'm also interested in any and all ES links you come across, so please pass them along via comments or the e-mail "Contact Me" at right.

ES at Royal Marsden

This ancient article (Sarcoma, 2003) recently popped up on PubMed, probably because free full-text was recently added. It describes an excellent English hospital's experience with the disease concisely and understandably. Keep in mind that the series starts all the way back in 1978. 

Some findings: small tumors (3 cm or less here) offer better prognosis; distal limb locations offer better prognosis; age (younger being better) may be a prognostic factor (other studies contradict this); radiation helps prevent local recurrence after surgery.

The Marsden article may shed some light on when to combine radiation with wide excision, and may provide an interesting contrast with the recent University of Washington article I blogged in May. 

"Treatment of Epithelioid Sarcoma at Royal Marsden Hospital" is here.

But what did the nurses say?

The Chicago Tribune article "Hospitals Want Involved Patients" leads with this odd anecdote:

Four years ago, when Edward Lawton was admitted to a New York hospital for surgery, he came prepared.

He brought his own case of sterile gloves and asked nurses to use them after washing their hands with soap and water.

He asked for a blood pressure cuff to stay at his bedside so it wouldn't come in contact with other patients.

And he requested that newspapers not be delivered to his room because "newsprint is dirty" and he wanted to avoid the potential for contamination.

Oy vey. No newspapers. Maybe a little too much "involvement"? 

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Now that I've made my joke, I feel compelled to say that I'm all for systemic quality-control efforts to encourage patient assertiveness, enforce hand-washing, reduce line infections, etc. And Lawton is absolutely right that hospitals have to create a culture that makes it easier for patients to speak up about their care, especially hygiene and meds. I've caught a significant error or two (the people involved were gracious), but I've also let questionable stuff slide out of shyness and regreted it later.

Stable disease! (and a guarantee)

After one cycle of Temodar, no new mets, no significant growth of existing tumors -- my disease is stable. We'd like to see shrinkage, obviously, but holding the line is great news at this point and a huge relief. I'd probably write more, but we celebrated the results with a margarita.

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Goofy moment: At the end of the visit, Dr. S's current fellow said, "See you in a month!" I replied, oddly, "I hope so." What I meant was that I didn't want to see him before that because my lung had collapsed or something. But he thought my hope was to be alive in a month, so he said something like, "Oh, you'll be here, I guarantee it." 

Well then.

Lunch

When David Letterman asked the late musician Warren Zevon what his cancer had taught him about life and death, he replied, "How much you're supposed to enjoy every sandwich."

Two doors

At 8:42 this morning, I decided the word of the day was "gratitude." (No, I'm not normally like that.) P. had left 20 minutes earlier, and what we had talked about had finally sunk in.

She was off for a shot to her knee and some tuning to her new hearing aid -- this casual sentence, of course, doesn't begin to summon the long-term pain and disorientation underlying these events -- and she kept on talking about being "lucky." Lucky to have a hearing aid, albeit an insane, over-amplified one that makes every word she speaks sound to her like it is coming from a public-address speaker; lucky for the capacity to walk and work and care; lucky to have an option to (temporarily) dull the pain.

Being that good and wise would be insufferable, but P. is my friend and our family's caregiver. She also meant it. She also curses and tells great stories, which helps.
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So, gratitude. I couldn't do luck -- I am lucky in so many ways, but the rather large unluckiness of my sarcoma means I'm not gonna be celebrating my good fortune, not on CT day. Trying for gratitude made me feel fizzy for a while. Then, of course, I forgot about it and started haltingly trying to empty the kids' bedroom for the imminent arrival of the flooring contractor.

I worked, and rested, worked, and then ran out of time and wrote a detailed note to P., who was coming later to help with the move. I felt like a dick, a specifier, an employer, a nanny diaries type -- but I decided that sometimes folks need to know exactly how they can help you. Besides, the least the note would give L. and I a gameplan to finish getting things straight, since P. obviously wouldn't have time for everything given her typically over-stretched day.
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L. called. She couldn't come to the hospital because of a work emergency. My line was that it was all mechanics, a familiar routine. I had magazines, all was well. The bad part, the emotionally loaded part, is waiting for the results... getting up in the morning, going to the hospital, waiting and waiting again, the sudden click of the door, the air draining out of the room as you laser in on the doctor's body language before she can open her mouth.

The mechanics stuff sounded good, and it's often true, but today it was bull. My stomach started seething from the barium just as they called me in. They couldn't find a vein for the contrast, and when they did, it stung like hell (or, as the tech charmingly said, "smarted"). My back twisted into spasms on the table. Blah blah blah. The "word of the day" was far away.

My stomach twisted into knots again just as the stentorian CT voice demanded that I breathe and hold my breath for the last, slow pass through the doughnut. I managed to stay together and get into the bathroom. After I was crouched there for a while, sick, a constant stream of cawing commentary started up outside the door.

"What's going on in there? Could it really be occupied? It says 'occ', but I don't think it's really occupied. What's going on? This is ridiculous! I can't believe it's really occupied." Grating on and on like that.

My thoughts were two: first, weirdly, to reason with them for being unfair (I hadn't been in there that long.... had I?); second, to kill them.

When I pulled myself together and prepared to leave the room, disheartened and wondering if I should go to the ER, I decided to give them the meanest stare I could. I emerged and blasted the stink-eye. But just as I opened the door, they started laughing. I rounded the corner -- so typical of me -- before I started cursing them.

Their laughter, I realized after my fury became comedic, was just nervous embarrassment. They had been blind to me -- and me blind to them.
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Leaving the hospital after a few more twists I won't bore you with, I felt a giddy sense of relief. But still no gratitude. We forget everything; even pleasures vanish so quickly from the mind.

I started worrying about the room and the contractor again, working up a lather of anxiety until I finally got up there and opened the door. What had been a morass of books and toys and bedding and mysterious plastic toy fragments was suddenly pristine.

I was shocked -- then, almost immediately, with a surge of the kind of joy that brims like tears, the word returned: gratitude.

Thank you, P., for that. (And a whole lot more.)

Saying thank you only signifies gratitude, it doesn't embody it in the way I want to, but I'll say it more anyway. Big thanks to mom and dad, who endured their own cataclysms helping us out on an oppressive day in the place formerly known as cold. Hell, while I'm thanking about it, thanks to Big T. (trial pseudonym), for the lift and for (I hope) giving me some reax to Barack's cycling clothes. And to L., for making me feel grateful every day.

This is like M&M's; I almost can't stop myself.
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Results Wednesday.

Imagination and failure

I'm a university geek, and therefore have a special fondness for commencement speeches (even though most are terrible), but I think J.K. Rowling's Harvard speech would be pleasurable even for normal folks.

The themes are imagination and failure -- but her treatment of them isn't what you'd expect:

So why do I talk about the benefits of failure? Simply because failure meant a stripping away of the inessential. I stopped pretending to myself that I was anything other than what I was, and began to direct all my energy into finishing the only work that mattered to me. Had I really succeeded at anything else, I might never have found the determination to succeed in the one arena I believed I truly belonged. I was set free, because my greatest fear had already been realised,... And so rock bottom became the solid foundation on which I rebuilt my life.

Her thoughts on imagination, which I'll only hint at, are the most powerful part of her talk:

Imagination is not only the uniquely human capacity to envision that which is not, and therefore the fount of all invention and innovation. In its arguably most transformative and revelatory capacity, it is the power that enables us to empathise with humans whose experiences we have never shared.

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Some other commencement speeches that I have enjoyed include Steve Jobs at Stanford (particularly powerful for people with cancer), Jon Stewart at William & Mary and Tony Kushner at Vassar. Oh, wait! -- some dude named Obama came up with a decent one when his friend Teddy Kennedy got sick. Told you I was a university geek.

Secular prayers

Reading Alain de Botton's somewhat silly piece on the desirability of creating a secular religion for atheists reminded me of a conversation E. and I had after I was diagnosed.

He told me, as many others had told me and as I myself had told many others, that he would be "thinking" about me constantly as I confronted this disease.

I was moved, of course, but it also occurred to me how feeble the verb "think" feels in a crisis, and we talked about that for a while. Yet for those of us who aren't sure about god, but are fairly certain that she is not an intercessionary deity (for if she were, why would she heal my tumor, yet afflict the poorest people on earth, or send a cyclone to Burma, or Mugabe to Zimbabwe?), these special "thoughts," these projections of empathy and sympathy and hope, are what we have: a secular form of prayer.

I am grateful for them, as I am for the religious prayers from people for whom praying comes more naturally.

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I can't resist quoting a cancer survivor's diary here. Confronted with the horrific possibility of losing his stomach, he begins praying. At first, things don't go well:

Time, surely, to get my prayer on.

That turned out to be a lot like going to the kitchen and deciding to make palladium. I was pretty sure that I couldn't just start asking for stuff. I was pretty sure I didn't even believe in god. I looked up prayer in the dictionary. I looked up prayer in the Catholic Encyclopedia. Interesting, but I didn't feel down with submitting myself to the will of a being I probably didn't believe in.

Finally, I decided that I would just try to say things that were true. The main problem with even this strategy is that it's just about impossible not to be disingenuous when you think you might be talking to god. It's all about making a good impression, and it takes a while--I think it took me a good 30 or 45 minutes of trying to slyly bullshit god--to turn off the part of your brain that's always calculating, the part that makes you act humble to get more dessert, or less cancer, or whatever.

He finally came to a place where he could speak honestly, and it brought some comfort. I'm not quite there yet.

So to my friends who are currently grieving enormous loss, or struggling with deadly illness or temporary disappointment, I am thinking about you, imagining comfort and peace and sending out my secular prayers.

After all, as de Botton says, "God may be dead, but the bit of us that made God continues to stir."

'What I've Learned'

I'm a fan of Esquire's often-imitated "What I've Learned" department. One of the interviews that stuck in my mind was a conversation with magazine employee Glenn Fitzpatrick, who was diagnosed with Lou Gehrig's disease in 2007.

It’s hard to describe ALS. If you read the clinical description of amyotrophic lateral sclerosis, you’d think it’s the most horrible disease you can have. But living through it is different than that. Maybe it’s because I have always tried to look on the bright side of things. Maybe it’s because I can still get around somewhat. Maybe it’s the Zoloft. But I figure if you are going to die young, ALS at least affords you the opportunity to do some of the things you always wanted to do. And it gives your friends and the people who love you the opportunity to let you know how they feel while you can still interact with them.

The disease itself is almost surreal. Everything weakens so gradually that you almost get used to it. If I had woken up one day feeling like I feel now, I’d be freaking out. But it’s played out over time. Now I think, Well, I almost didn’t make it up that step. I guess I won’t be able to walk soon. It almost seems like the natural order of things.

This puts a lump in my throat. People can be so brave.

Beauty and terror

"...things between lovers, even of longest standing, can be botched in their bodies, though their wills don't fail."

I have returned again and again to this poem from Robert Hass' Human Wishes:

On Squaw Peak

I don't even know which sadness
it was came up
in me when we were walking down the road to Shirley Lake,
the sun gleaming in snowpatches,
the sky so blue it seemed the light's dove
of some pentecost of blue,
the mimulus, yellow, delicate of petal,
and the pale yellow cinquefoil trembling in the damp
air above the creek,--
and fields of lupine,
the blue blaze of lupine, a swath of paintbrush
sheening it, and so much of it, long meadows
of it gathered out of the mountain air and spilling
down ridge toward the lake it almost looked like
in the wind. I think I must have thought
the usual things: that the flowering season
in these high mountain meadows is so brief, that
the feeling, something like hilarity, of sudden
pleasure when you first come across some tough little plant
you knew you'd see comes because it seems -- I mean
by "it" the larkspur of penstemon curling
arching the reach of its sexual being
up out of a little crack in granite -- to say
that human hunger has a niche up here in the light-cathedral
of the dazzled air. I wanted to tell you
that when the ghost-child died, the three-month dreamer
she and I would never know, I kept feeling that
the heaven it went to was like the inside of a store window
on a rainy day from which you watch the blurred forms
passing in the street. Or to tell you, more terrible,
that when she and I walked off the restlessness
of our misery afterward in the Coast Range hills,
we saw come out of the thicket shyly
a pure white doe. I wanted to tell you I knew
it was a freak of beauty like the law of averages
that killed our child and made us know, as you had said,
that things between lovers, even of longest standing,
can be botched in their bodies, though their wills don't fail.
Still later, on the beach, we watched the waves.
No two the same size. No two in the same arch
of rising up and pouring. But it is the same law.
You shell a pea, there are three plump seeds and one
that's shriveled. You shell a bushelful and you begin
to feel the rhythm of the waves at Limantour,
glittering, jagged, that last bright October afternoon.
It killed something in me, I thought, or froze it,
to have to see where beauty comes from. I imagined
for a long time that the baby, since
it would have liked to smell our clothes to know
what a mother and father would have been,
hovered sometime in our closet and I half expected
to see it there, half-fish spirit, form of tenderness,
a little dead dreamer with open eyes. That was
private sorrow. I tried not to hate my life,
to fear the frame of things. I knew what two people
couldn't say
on a cold November morning in the fog --
you remember the feel of Berkeley winter mornings --
what they couldn't say to each other
was the white deer not seen. It meant to me
that beauty and terror were intertwined so powerfully
and went so deep that any kind of love
can fail. I didn't say it. I think the mountain startled
my small grief. Maybe there wasn't time.
We may have been sprinting to catch the tram
because we had to teach poetry
in that valley two thousand feet below us.
You were running -- Steven's mother, Michael's lover,
mother and lover, grieving, of a girl
about to leave for school and die to you a little
(or die into you, or simply turn away)--
and you ran like a gazelle,
in purple underpants, royal purple,
and I laughed out loud. It was the abundance
the world gives, the more-than-you-bargained-for
surprise of it, waves breaking,
the sudden fragrance of the mimulus at creekside
sharpened by the summer dust.
Things bloom up there. They are
for their season alive in the bright vanishings
of air we ran through.

The necessary ache

Like many others, I was struck by Trish Deitch's memories of director Sydney Pollack in The New Yorker.

An excerpt:

When Sydney, who died on Monday at the age of seventy-three, read a film script, he’d look for one word that would become what he called “the spine” of the story. The word that made up the spine of “Out of Africa,” he told me, was “home.”...

Finding the spine of a story like “Out of Africa” was important to Sydney for many reasons, the most important of which was that it led to what he called “the ache.” ... It is the ache of having one chance at deep love in a lifetime of shallow loves, and losing it too early. It is the ache of perfect, private union destroyed by terrible, worldly circumstance. For Sydney, the ache was about the way that the things we hold most dear always elude us.

That ache, that spine, is of course the center of life itself.

Fickle

I'm a dog person, I suppose, but I also love cats, especially our current cat, Prindle. She is big and soft and is spotted in a way that recalls a Holstein, but with beautiful downy grey fur instead of black. Always affectionate, during the worst of my illness she became a constant companion, pressing herself against me during the chills, fevers and horrible wakeful paralyzed stasis of chemo. I became very attached to her, and she to me. 

This is a measure of how great this cat is: She actually uses a scratching post. She never pees on the carpet. She comes reasonably reliably when called. She once was named after a Hindu deity and lived a hippie life eating rats in a barn, but when presented with a fireplace and Iams, she never turned back, somewhat like a rich kid secretly delighted when his parents insist he leave the commune.

So, anyway, great cat.

Mr. and Mrs. Sick Guy, my parents, are currently visiting, and they also love cats, especially great ones. In fact, they love cats so much that my mother has launched a concerted and possibly Chardonnay-fueled attempt to win over Prindle's affections. It turns out that, with frequent applications of tuna juice and carefully stacked (mashed is far too vulgar for our classy cat) small-can cat food, you can indeed entice Prindle to spend a lot of time with you and sit on your lap.

I have no problems with this, honest. 

But perhaps my trash-talking about the golden days coming to an end when the folks fly home actually reached an audience. 

Today, I walked upstairs to my bed and didn't find Prindle in her usual place by my pillow. Instead, there was a small, wizened poop resting on the sheets.

When thumbs up is no comfort

The New York Times just published an article about how attitudes and images of cancer can interfere with coping with the disease.

This is a recurring concern for me. Although I'm a big believer in positive attitude, in fighting, in living in the present moment, etc., all of these models are imperfect. Worse, some of them can feel punitive if things don't go well -- after all, attitudes don't kill, tumors do. (The Times article page helpfully linked to a metastudy that analyzed studies relating to the influence of psychology on cancer survival and recovery. Bottom line from the abstract: "here is little consistent evidence that psychological coping styles play an important part in survival from or recurrence of cancer. People with cancer should not feel pressured into adopting particular coping styles to improve survival or reduce the risk of recurrence.")

I'll share more of my thoughts on this soon -- as well as some from the late Alice Trillin, who has brilliant thoughts about the limitations of the different "talismans" we use to try to make cancer less scary.

Here's just a little taste from the Times piece:

Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.

To describe a patient’s process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, U-turns; its changing destinations; its absence of win, lose or fail.

I tend to think of cancer as a "fight," not a journey (facile joke: who'd want to travel to sarcomaland?), but I'm more and more aware of the problems with "fighting." To name just one, I think being too invested in the fight is what makes finishing initial treatment so psychologically difficult for many people, myself included.

I dropped into a pretty black pit of depression when I couldn't actively "fight" for a while. Suddenly my purpose was gone; I couldn't find larger meaning in my ongoing extreme discomfort from the grueling treatment. I am trying to learn from that and I'm working deliberately to think of the illness in different terms, including as a means of growing personally and seeing the world more clearly and meaningfully.

Of course, I'm still childish and I still want to kick the cancer's ass.

***

By the way, myxoid chondrosarcoma (or was it a leiomyosarcoma?) survivor Brian Wickman is quoted extensively in the piece. He's a cool guy. A YouTube video of him speaking to a group that hooks cancer survivors up with each other for rafting and kayaking adventures is here.

A reasonable man

L. and I left the cold state for a couple of days to check in with Dr. Bow Tie (who, on this occasion, lived up to his nickname, wearing a tie that apparently required an MD-Ph.d. to divine how it related to his slacks and shoes). 

The goal was to get a plan in advance of the CT I will have next week, and we got one -- several, actually, depending on how things turn out with the scan. The hope is to continue on with Temodar, but I'm not sure if that's going to be possible. Although being relatively non-symptomatic makes it difficult for me to tell if my chemo is working or not, I tend to believe that the tumors have advanced a bit over the last couple months and we'll need to start something new. I hope I'm wrong.

Fun details of the NY Trip are TK, but here's a few paraphrased comments from the discussion that might interest people who know me or other epithelioid sarcoma patients:

• I "look good" -- I have "low tumor volume." I'm a "great candidate" for a clinical trial because I'm doing relatively well at the moment.
• Why did he try gem/tax again when my cancer began spreading this winter? Because you "go where the money is"; the tumor had shown some sensitivity to that drug combination before and enough time had elapsed to make it reasonable to think it might work again.
• What about temodar? How likely is a good or stable disease response from that? Temodar is a "reasonable choice." So why did he strongly prefer gem/tax after the tumors got into the nodes behind my belly, while my local oncologist advocated for temodar? Because we didn't know what would work best. There's no formula.
• How are you feeling about deforolimus? The mTor inhibitors have a huge amount of promise (some background here), but they aren't quite ready for prime time (though they may be soon). It may turn out that deforolimus needs a little help -- that it will work better in combination with some other drug.
• What about using rapamycin, the transplant drug, off-label as a substitute for deforolimus which is now pretty much only available in Ariad's SUCCEED trial (which is placebo-controlled)? He's done it, and he's even seen an epithelioid sarcoma have a mixed response to it, but it's a down-the-road option for me. Rapamycin doesn't have terrible side effects, so you don't have to worry as much about being too late with it. Incidentally, Dr. BT has also heard about ES responding to deforolimus.
• The caveat he pointed out is while it is reasonable to pore over study tables to look for epithelioid sarcoma responses, it's not a dependable enterprise because you usually don't know if ES has any particular sensitivity to the drug, or if the drug just happens to have positive effects for X% of soft-tissue sarcoma patients and the ES response was just the luck of the draw.
• I may be a good candidate for a trial of a new tyrosine kinase inhibitor -- a member of the "nib" family of drugs being actively developed by several pharma companies. Imatinib, dasatinib, sorafenib... etc.
• How about sorafenib, anyway? Could be a "reasonable choice."
• Other options? Maybe high-dose single-agent ifosfamide since I haven't had any ifos before.

None of this is, of course, is medical advice for anyone -- not even me. The doctors will consult after my scans and then we'll lock down a plan. 

It's great to have so many "reasonable" options; of course, the catch is that there is no compelling third-line drug for metastatic ES that would make more options "unreasonable." 

The clear options come earlier: some sort of doxrubicin-based chemo as the first line, gemzar and taxotere as the second line. Finding the best third- or fourth line defense is much murkier: I will keep you all posted about what we end up trying...