ES Facebook group launched

I mention this mainly for completeness, since I'm not myself a Facebook member, but someone has launched a "causes" page for epitheloid sarcoma on the social-networking site. The gateway is here. It seems like a worthy venture, but one line from the page gave me pause. Caroline, the page owner, writes, "It is proven that it does not respond to chemotherapy." 

This is verifiably false; this paper doesn't quite get to core of the issue, since it's in vitro, but it shows that ES cells are killed by paclitaxel, aka Taxol (the standard second-line treatment for ES, and many other sarcomas, is now a combination of gemcitabine and docetaxel, another taxane). It is true that ES is highly chemo resistant, and it may be true that chemotherapy does not have a proven overall survival benefit for ES. The jury is still out, unfortunately. But based on my response to chemo and the anecdotal accounts of others, I'm convinced that at the very least chemo can increase progression free survival. I'm puzzled as to why more than a few people dealing with ES want to say that chemo is useless. The situation is bad enough -- let's not make it any worse with overly sweeping statements about the disease's drug resistance.

Studying loss

An arresting (but difficult to read) article from the Los Angeles Times about a college course in which students visit autopsy rooms, hospices and convicted murders to learn about death and loss. College students study death to learn the meaning of life:

For the last decade, Bowe has led her classes of 30 students into the refrigerated tombs of bodies stacked bunk-bed-style in the morgue and into hospice bedrooms, glowing from television screens, occupied by the sickly and soon-to-die. She guides them through the barbed-wire fences of Northern New Jersey State Penitentiary, past the outdoor recreation kennels where gang members sweat and swear, to a law library where they sit down with murderers.

Her students are from suburban small towns and inner cities. They enroll in Bowe's class because they are curious about her unusual field trips. But something more powerful also draws them here: a need to know how we die, and why. What happens to our bodies, and is there such a thing as the soul?

Scaring the kids (or, still more matters culinary)

Another thing that a doctor said to me just after I got cancer that seemed a little obvious at the time, but took on more meaning later was: "You know, you didn't do anything to get this." 

I thought of that yesterday when I heard about a new TV commercial from Physicians Committee for Responsible Medicine attacking hot dogs. The lede of the AP story explains: 

A new TV commercial shows kids eating hot dogs in a school cafeteria and one little boy’s haunting lament: “I was dumbfounded when the doctor told me I have late-stage colon cancer.”

Nice! 

The little boy, as well as two others making testimonials in the ad, do not have cancer. (The use of "dumbfounded" by a child was a clue as to the scripted nature of the thing.) I had initially thought the ad was from some kind of vegan group -- the PETA milk-causes-acne crowd -- but I guess that isn't the case. Still, I'm haunted by the thought: What if the vegans are right, and the rest of us will fade away, leaving the world to slender, tight-lipped folks publishing abrasive web sites and walking around in soy shoes... 

Weird

I'm writing this with my ear half-cocked for the school bus. B. is riding home on the bus for only the second time ever, and I am sitting here waiting to usher him inside after the first day of second grade. I am armed with cookies and cold milk. It's a little surreal, but very sweet. At least I'm getting something out of sarcoma...

Teddy

When I became depressed last summer after finishing my initial blitzkrieg of chemotherapy and radiation, I went to see a psychiatrist who spends a lot of time working with cancer patients. 

He said something to me that seemed obvious then, but has grown more meaningful with time. I can't do it justice, but the pep talk went something like this: "Cancer isn't all you're about. It needs to be attended to, but it can't become everything you are. You are still the person you were before you got sick, and you need to honor that person by making room for your old passions and pleasures -- and finding new ones."

(Obviously, I've been crackerjack on that advice -- writing a cancer blog under the pseudonym Sick Guy. But no, no -- I am honoring who I was, who I am. I've always had a dark sense of humor.)

I was reminded of the doctor's words when I saw Teddy Kennedy speak at the Democratic convention. I was moved more by his presence than what he said. The contingency of it -- no announcement beforehand lest something go wrong and lead to a cancellation -- echoed the uncertainty of my own cancer experience. More echoes: That hair, thinned but still unmistakable, the stool behind the podium, the physical support of his wife, his energetic defiance. 

Kennedy didn't go to the convention because he wanted to hear a house go wild one last time, though I'm sure that was nice. He went because he is passionate about his party's candidate, and because he wants to do one more big thing before he dies. He's doing what all of us dealing with this illness are trying to do, put one foot in front of the other, however laboriously, for the people and causes we love. Even if, especially if, it costs us. My great work is with my family. His is... broader. 

The political blogger Ezra Klein elaborates:

In the last few weeks, I've spoken to a couple Kennedy aides who all told me the same thing: Health care. Kennedy has told them that this is his final crusade. Aides who work in other legislative areas have been told that their issue areas are going to almost dissolve, and they'll become something like support staff for the health team. Kennedy means to pass a bill. He means to muster the full force of his legislative talents, his sprawling staff, his longstanding relationships, and even the poignancy of his condition. It will be his legacy. It is his dream.

Times to me: 'Get off the couch!'

I wasn't going to comment on the New York Times cancer and exercise story (I don't want to be a NYT clipping service), but I kept thinking about the article hours after reading it, specifically this part:

Other studies indicate that moderate exercise has additional benefits like strengthened immune function and lower rates of recurrence. Studies at Dana-Farber found that nonmetastatic colon cancer patients who routinely exercised had a 50 percent lower mortality rate during the study period than their inactive peers, regardless of how active they were before the diagnoses.

I wondered how they figured that out, so I read a little more about the 2006 study. It made sense to me that having a more serious presentation of colon cancer would make you more likely to be sedentary after treatment and also more likely to die from a recurrence or other cause. I wanted to see how they adjusted for that. The study's authors say they can't completely eliminate that possibility, but they picked patients at the same stage of the disease who had similar surgery and chemotherapy, adjusted the data for other risk factors of death, and eliminated from the study population people who died within six months of having their physical activity assessed. That said, the study doesn't have much to say about causation or the mechanism by which exercise might lower recurrence risk. 

Nonetheless, an editorial published along with the study used these results and others relating to breast cancer to tell patients that it's "time to get moving." If you're tempted, exercise seems to provide measurable benefits at about 9 MET hours  a week (don't ask; it's the equivalent of four or five 30-minute brisk walks) after breast cancer and 18 weekly MET hours (four or five 30-minute jogs) after colon cancer. Shockingly, there's no epithelioid sarcoma data. I don't know if working out that much is possible for me, but I'm at least going to take a walk this afternoon...

Deforolimus trial

I finally got to take a look at the informed consent documents for Ariad’s phase III trial of oral deforolimus. The trial is intended to see if the drug improves progression free survival for patients who have had successful chemotherapy for advanced sarcoma. 

It is a double-blind, placebo-controlled study: Participants are assigned randomly into a placebo group or a deforolimus group, and neither they nor their doctors know which group they are part of. The odds of getting the placebo are 50/50, a coin-flip -- a huge negative for electing to take part in this particular study, obviously. Ariad’s thinking is that the standard of care after completing sarcoma chemotherapy successfully is watchful waiting; therefore, study participants randomized into the placebo arm of the study are receiving standard treatment.

Here are some notes about how the study works and the side effects of the drug that I gleaned from the documents:

Patients must have completed at least four cycles of chemotherapy without any worsening of the cancer; 1, 2 or 3 previous treatments (chemo completed 3-8 weeks before being randomized into the study)

Randomized in either placebo arm or treatment arm; double-blind

14 days of pre-study screening; includes review of scans (process may take up to 3 weeks, I think; little confused by this part)

Study involves bloods every month; scans every 8 weeks

Kicked out of study if disease progresses or toxicity becomes unacceptable

No crossover from placebo arm to treatment arm

Ongoing monitoring

Greater than 20 percent side effects:

weakness and fatigue
appetite loss
mouth sores or sore throat
rash
low red blood cell counts
diarrhea
low white blood cell counts
nausea
increased blood fat levels
vomiting
low platelet counts
taste changes

Less frequent side effects:

headache
fever
weight loss
tingling sensation in the hands or feet
hair loss
high blood sugar levels
constipation
increased liver enzyme levels
low blood levels of sodium, potassium and phosphate
nail discoloration and brittleness

There are also some dire less than 2 percent and less than 1 percent side effects.

More matters culinary

I'm tired of the bacon fetish currently so common among people interested in food. I'm waiting for round white eggplants and tender shell beans to come into vogue. But bacon, like the even-more-trendy cupcake, is delicious: The flesh of the most savory animal, in its most savory form.

What bacon is to ordinary meat, Benton's bacon is to ordinary bacon. It is thicker, richer, smokier, saltier. More in every way. I had been looking forward to eating a BLT for a little more than a year since my last one last summer -- the heirlooms have been ripening slowly here in the Rainy Place -- and finally had my chance this weekend. We slathered Gerard's bread with mayonnaise and filled the sandwich with perfectly cooked Smoky Mountain bacon and plump slices of heirloom tomato. Even without the "L," the sandwich was worth the wait.

Matters culinary

I occasionally worry about eating too much sugar. If you spend time reading about cancer, you'll inevitably read something arguing that eating sugar "feeds tumors" and thus should be avoided to the extent possible.

Tumors, after all, are on metabolic hyperdrive compared to normal cells; and glucose, indeed, is the fuel of cellular metabolism. This is why PET scans work; malignant cells suck up and process the radioactive sugar faster than normal ones. But it does not necessarily follow that dietary sugar is like premium unleaded for cancers, in the same way that it doesn't follow that eating fat deposits fat on our bodies. (As they say: It's the calories, stupid.) Cells have elaborate mechanisms for producing their own glucose, which they would do even if one achieved the miserable (and probably impossible) end of eating a diet without sugar. I'm no expert, and this is not the definitive word on the matter, but I found this, and particularly this convincing:

The idea that sugar feeds cancer, if it was true, would understandably terrify anyone. It is this belief, though, that has helped to feed fears of refined sugars and flours and other ‘bad’ carbohydrates.

Recent stories circulating the internet and media have led many people to think that concerns over sugars are real and that they come from upstanding doctors at prestigious institutions. No one can blame them for believing sugar is linked to cancer. There are more than one million websites (a stunning 1,080,000 by last count) capitalizing on this fear and virtually none offering the science.

But it is nothing more than an urban legend, the result of misunderstood and distorted science.
...
But there is no truth to the rumor that sugar causes cancer, or that people with cancer shouldn’t eat sugar because it causes cancer to grow faster, said Dr. Timothy Moynihan, M.D., a cancer specialist at Mayo Clinic, in Rochester, Minnesota. He debunked this popular misconception in a recent article, explaining:

Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth.

This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans. Doctors use PET scans to help determine the location of a tumor and see if it has spread. During a PET scan, your doctor injects a small amount of radioactive tracer — typically a form of glucose — into your body. All tissues in your body absorb some of this tracer. But tissues that are using more energy — exhibiting increased metabolic activity — absorb greater amounts.

Tumors are often more metabolically active than healthy tissues. As a result, they may absorb greater amounts of the tracer. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true.

This isn't completely dispositive, and I'm not arguing in favor of eating tons of sugar -- just of not worrying overmuch about enjoying dessert. There may be good reasons to moderate the Ben & Jerry's, but depriving tumors of "fuel" is not one of them.

Good news!

My most recent CT scan shows stable disease, so I am continuing on with the Temodar. The questionable nodes all stayed the same size, and my pneumothoraces (collapsed lungs) have improved a bit on both sides. The test did pick up a tiny (3 mm) nodule in the upper portion of my left lung. It is possible that this nodule is a benign after-effect of some mild respiratory disease. It could also be some sort of artifact or shadow caused by the scan equipment itself. It could also be metastasis. Sarcoma mets can show up anywhere in the lung, of course, but they tend to appear first in the lower portion, so I'm going to choose to be optimistic about this spot until we can get a better read on things in the next study. I haven't read the report or talked in detail with Dr. S yet, but I'm quite relieved.