In the Chemo Room: Out with a tumor

I'm sitting at my computer on the day after a thoracic surgeon, John D. Mitchell, took out a relatively large colorectal tumor from my trachea, and I've been left wondering if all the muscle soreness in my body (as if at age 64 and totally out of shape I had just played in a two-hour pick-up, touch football game) is the result of not taking the heavy pain killers they usually give you after a major surgery?

Is that the pain they are trying to kill? Is it pain that results from full-body anesthesia? No matter where the surgery?

Because that's most of the pain I am feeling today on the day after. A mild sore throat, and little chest pain, but they pulled the tumor (literally) from the wall of the trachea and kept me overnight at the University of Colorado Cancer Center to make sure they didn't also pull out a hole in the trachea wall, which would have caused me further problems.

They did the work with a bronchoscope and had they accidentally pulled open a hole in the wall of the tube from my throat to my lungs, they would have had to split open my chest to go in and repair it. That's why I am home today; they did not open a hole, and I was released this morning as my over-all-aching increased by the minute.

But this has been the latest chapter in my fight from the Chemo Room against this four-and-a-half- year-old case of colorectal cancer.

The tumor grew in my throat while I was enrolled in a clinical trial testing a drug that had mild-to- moderate side effects and held most of the rest of the many tumors in my lungs and chest in check during the test. But then I started coughing badly, they ran a CT scan and looked closely, and ordered up the bronchoscopy.

So now I've been dropped from the trial because it was clear the drug I was receiving and have written about here before wasn't doing as good a job as we were thinking it was doing. But the trachea is a strange place for colorectal cancer to matastisize, so you can probably blame my individual cancer for the unexpected response to the drug.

The good thing is they found the tumor before it stopped my breathing altogether; they learned a little something about the drug; I'm breathing better now and no longer coughing as much. The bad thing is the tumor could grow back from the place where it was taken from, and the rest of the cancer mets (metastases) remain in my lungs and chest cavity (lymph nodes) and must be dealt with.

So you could call this chapter of In the Chemo Room, 'In, Out and Back Into the Chemo Room' because that's where I'm destined to return. As soon as all these aches and pains go away and my body heals from the surgery.

Dr. Wells Messersmith, my oncologist now, said he'd find a new way to treat me, which probably will involve a new clinical trial. But that's what the Cancer Center has come to be known for nationally in a very short time.

And that's why Mitchell, one of the nation's best thoracic surgeons I am told, is working there on patients like me. You can't say I'm not getting the best of care. And so are hundreds and hundreds of others who are passing through the center's gates.

In the Chemo Room: 4 years and still crawling, LOL

I’ve been dying of Stage IV, metastasized colorectal cancer for more than four years now.

That thought occurs to me standing in the sun outside my house in the backyard where a bunch of croquet buddies gather once a week to play a game turned on its competitive head by a former Denver Bronco, Max Leetzow, who likes to sit on a plywood-cushioned bar stool and sing “Grown men playing croquet” as he waits his turn to beat us again, playing with only one hand.

The song, one Max made up, is meant to disarm his fellow players, making light of the play and any serious pursuit of victory. Every word said on the croquet course is meant to distract or dissuade a fellow player from playing to his own advantage. That’s how Max has changed the rules of the game for this bunch over the past twenty years, and everyone plays along.

It’s very competitive; Max Leetzow, is the most competitive human being I have ever met.

We began playing in my backyard before I was diagnosed. So my croquet buddies, in an odd way, have served as one of my first support groups, although many others have joined the fight with me through the years: my three sisters, my two daughters, a retired Chicago cop, two women friends, a formal, on-line support group called Colontown, my doctors and the nurses at Porter Hospital, and now a new cadre of doctors and nurses at University of Colorado Hospital Anschutz Cancer Center in Aurora.

On July 8, I joined a clinical trial for a drug known only by its non-name: MEHD7945A, made by Genentech, a big-pharma company out of San Francisco that wants to find out whether the drug helps, hurts or kills me.

So far, it seems to have helped a bit, but that’s not really the point of the clinical trial I’m enrolled in. It wants to know how bad it hurts at the dose I’m receiving now every two weeks.

The hurt, so far, has been surprisingly, if not pleasantly, mild. And the bit of improvement that I have felt from the symptoms of my cancer suggest I might survive through this fifth year and maybe even long enough to finish my novel.

I’m smiling as I write that.

I think it’s funny; or at least, as my daughters would say, it’s been fun. I have always taught them it’s a dangerous world outside your door, but if you’re careful and not afraid, you should always make sure you’re having fun. After four years of fighting cancer, I still believe that, and they keep asking me if I'm having fun!

Yes, my "fun" principle has been challenged, but as I write my the novel, and deal with the side effects of this new study drug, I cannot deny I’m still having fun. Croquet and Wild Turkey, of course, play their roles in that, too.

But to the clinical trial: I told my study doctor, Wells Messersmith, last week, as we looked over my preliminary scans since starting on the experimental drug, that within thirty minutes of my first infusion, I felt relief from a breathy kind of cough and shallow shortness of breath that my Porter oncologist, Tom Kenney, said would signal the continued growth of tumors in my lungs.

Kenney said eventually, within two years or maybe less, I would probably need to wheel one of those little green oxygen tanks around behind me, and that, generally I would “dwindle” to my death.

I told my sister-in-law as I started the clinical-trial appointments in July that I had no intention of “dwindling” to anything.  Was I being gruff and bombastic? Yes, perhaps an old lion’s roar, as I used to call the barking of old men against the fading worlds of their own times.

But I also am determined. More and more people are surviving cancer for longer and longer periods of their lives. I expect to get something accomplished during the last years of mine.

In fact, I’ve been monetizing this blog, and starting a separate business, www.PioneerHQ.com, with two partners since the New Year, and I fully intend to request my sponsors here to renew when the  calendar turns a full year on their support. But back to the clinical trial.

As I made my report of feeling better and looked at my initial scans, Messersmith smiled, a little too indulgently, and said, “We like patients to tell us when things improve for them,” he said. “We include it in our reports when we discuss efficacy.” You could almost hear “dwindle” repeated in his tone.

But efficacy is not the point of Messersmith's study. My scans backed me up; there was some initial, minimal shrinkage of the tumors lit up in the scans by radiation and a contrast they make you drink that always causes a dose of diarrhea.

The study is more concerned with side effects, and Genentech’s drug is no “spindly-armed,” weak hitter, as Max would call a poor shooter on the croquet court, despite the “mild or moderate” side effects described in the consent documents you sign to join the clinical trial.

After that first treatment, when I could breathe easier, I came home to a long night of fever, chills, crawl-into-bed chemo misery, and after a poor night’s sleep a bit of chemo-exhaustion and even a belated, three-day-later bout of chemo-diarrhea, which is when I’m told all the dead cancer cells get carried out of your body.

Later the next week, my fingers and hands started showing some tiny “splits,” a nasty side effect of Erbitux which has been one of my other chemical little buddies along the way.

The MEHD7945A splits, separations of the skin like thick paper cuts, were hardly as big, wide and painful as the Erbitux splits, so the drug lived up to it pre-consent reviews on that front, although those reviews did not mention splits at all. But again, the drug is being given to me to find out how my body reacts to it.

Also the nasal drip that came with all the other chemical cancer killers pumped into my blood stream over the four years returned within about a week of receiving MEHD7945 as well.

Overall, though, like I said, it's been fun. After a few days post-treatment, you actually do laugh about these minor discomforts, especially if your hope is still alive that the drug with no name might actually cure you.

And I have found that hope, if not LOL funny, still happens to be a lot of fun.

In the Chemo Room: A guinea pig

Never did I imagine I would be walking through the Phil Anschutz-funded doors of the Anschutz Medical Campus in Aurora volunteering to be a guinea pig for cancer research.

But that's what I did on Monday, Tuesday and Wednesday when I went for my first screening and scan appointments to enter a clinical trial for a drug called MEHD7945A, sponsored by Genentech Inc. out of San Francisco, which I suppose wants to manufacture and sell the drug once it is cleared by the FDA.

The consent forms are pretty clear: "You are being asked to take part in this research study of an investigational drug called MEHD7945A. The study drug is being looked at to see if it could be a treatment for advanced cancer. "Investigational" means that the study drug has not been approved by the U.S. Food and  Drug Administration (FDA). The FDA is the U.S. government agency that reviews the results of research and decides if a drug can be sold in the U.S.

"You are being asked to be in this study because your tumor has grown or spread during or following chemotherapy or other treatment, or there is no standard therapy for your type of cancer.... The purpose of this research study is to determine the safety of the study drug and to determine the highest tolerated dose ... that can be given to subjects safely.... This is a Phase 1 study. This is the first time that MEHD7945A will be given to humans and is in a very early stage of development.... Please carefully read the sections on risk and benefits below."

The forms went on to describe known side effects, which so far have been mild in most subjects, but the forms don't rule out death or some lesser cataclysmic personal reaction to the drug and they schedule your first infusion (mine is on Wednesday) as a 10-hour day to make sure you don't have one.

The scans taken this week are done to establish a baseline for growth or reduction of the colorectal cancer growing in my lungs. The best results the researches will tell you about, however, is a possible stabilization of the growth and spread of the tumors. That's one reason entering the trial is considered one way a cancer patient who has gone through "standard" treatment and not defeated the disease can prolong his or her life beyond the time it would take for it to kill you if left unabated.

Dr. Wells Messersmith, the "study doctor" in charge of my treatment, told me July 8 that I don't look like someone who has cancer -- I've been gaining weight lately -- and my hope is that I keep up those appearances (and energy) while this new drug stabilizes my disease.

But none of all that is what amazed me most as I walked through the doors of the Anschutz cancer pavilion this week. What amazed me was the beehive of economic activity represented by the center during what has been the third of probably the three toughest economic years in the state's history.

Patients and employees alike hurried in and out of the pavilion; cars fueled by $3 gas, big buses and small carts ferried people in and out of jammed parking lots; hospital shops and cafeteria, information desks and check-in outposts were hustling with an assured, customer-service oriented dispatch.

I never thought I would have to be grateful to Phil Anschutz, but the marvel that has been created by The Anschutz Foundation -- which has contributed more than $100 million to building the center -- the University of Colorado, the city of Aurora, the state of Colorado and the federal government calls forth a deep sense of relief over having available to me the very best opportunities to beat my disease.

I don't mind feeling like a guinea pig.

Maybe my participation in this clinical trial, like all the work being done at the medical campus, will save a few lives down the road. 

In the Chemo Room: Colon Cancer Alliance national meetup

I walked three miles today, more than I have been able to exercise since they but a bag on my belly and took a tumor and my rectum out of my bottom in September 2007. It felt good.

I was following some of the primary advice given colorectal cancer survivors -- about 60 of them -- attending the national conference of the Colon Cancer Alliance at the Marriott Denver City Center on Friday. The advice I heard most often was: Keep exercising. It will prolong your life.

Which is what all those survivors are looking to do. Some, like me, still have the cancer and are still fighting it. More than half of the 60 had survived the disease for more than five years, and some had passed the 10-year mark. Most of those looked pretty fit. And many of them walked in the Denver Undy 5000, a 5K and one-mile fun run and walk held this morning in City Park.

It didn't take long to be told on Friday that exercise was one of the best anti-cancer drugs. Dr. Tim Byers, a professor of preventive medicine at the University of Colorado Cancer Center in Aurora, opened the day-long conference with a keynote address packed full of statistics that showed declining death rates for both men and women treated for colorectal cancer.

Why?

"We don't really know," Byers said, striking a tone that held throughout the conference: a forthright realism about everything from ordinary doctors' lackadaisical endorsement of colonoscopy, the most effective preventive for colon cancer, to the lingering effects of "chemo brain," a loss of memory and other cognitive function after prolonged chemotherapy.

Another University of Colorado Cancer Center doc, Stephen Leong, lent credence to cancer survivors' complaints of "chemo brain," and suggested it was one of several persistent side effects doctors need to pay more attention to as increasing number of survivors live cancer free for longer than five years.

Other speakers noted lengthening survival times tend to make the magic five-year mark less meaningful. Cancer changes your life, many speakers agreed; but after-cancer realities are often magnified: money problems from long-term loss of income, relationship problems from a lack of a sex life, reassessment of career goals and capacities, all make surviving cancer a new life challenge.

Byers said at the outset that researchers believe all cancers, including colorectal cancer, like car crashes, are caused by a variety of factors -- genetic and cultural, environmental, behavioral, "What we run into in life" and simple "bad luck" -- that often combine in multiple and unpredictable ways.

Colorectal cancer, however, remains the second leading cause of cancer deaths in the United States after lung cancer, and part of the reason is that it strikes both men and women and most of it occurs sporadically, meaning the victim's cells mutate randomly.

Still risk factors for colorectal cancer are listed as:

•  Age, gender, race/ethnicity
• Family history
• Inflammatory bowel disease
• Diet
• Body weight
• Physical activity.

But an estimated 40 percent of colorectal cancer can be attributed to four specific risks: obesity, lack of physical activity, fruit and vegetable intake, and consumption of red meats.

"For colorectal cancer, brisk walking can take down the risk factor dramatically," Byers said.

So the next morning, I decided instead of standing around at the Undy 5000, where runners and walkers wear underwear over their exercise outfits to designate the geography of the colorectal problem, I would indeed walk the three miles to see if I could do it.

It seemed the best and cheapest therapy available.

I did, and it felt good.