Molecular Profiling — the Wave of the Future?
On the way to my bronchoscopy at Johns Hopkins I was unsettled by the scene of a security guard chasing after my wife as if she were a purse snatcher. Which may or may not be true. In this case, however, she was just impatient. We were running late and she had dropped me off at the door to the Outpatient Clinic, where the surgery was to be performed, and then gone to park the car. When I entered, I almost got myself in hot water with the security guard too. To be fair, this is not the kind of security setup that might be found at the Department of Homeland Security. There were no metal detectors. No armed guards that I could see. No dogs. Just a lonely guy sitting behind a small desk tucked away in the corner. I walked by without noticing him.
“Hullllllooooooo,” he called out. I turned to him thinking he might need directions to the bathroom; instead he wanted to wrap an orange paper bracelet around my wrist. Evidently it announced that I was a legitimate patient. Of course, any maniac could have walked in from the street and received the same orange bracelet. The security guard didn’t ask whom I was seeing or check my identification. So I walked on toward the elevators properly tagged, if a little confused.
I waited for Dena in the waiting room. She too had come through the same door and passed the same security guard. However, Dena, who has little patience – well, for anyone really – did not stop for the security guard. She didn’t even offer him directions to the bathroom. She blew right past him determined to get to the elevator bank and not miss my appointment. This prompted the guard to leap from his podium-like little desk and run after her, chasing her down just as she was getting ready to step on the elevator and tagging her like a zoologist clipping a bear cub’s ear. If there were any maniacs getting into Johns Hopkins Hospital, by George, then they were going to be properly identified with a random orange piece of paper with a date on it. Maniac was here, 9/19.
“The crazy guy made me miss my elevator,” Dena told me when she arrived, just in time for my appointment. She brushed at her shirt sleeve, as if dismissing the whole experience like a piece of lint. Now it was time to get down to business cramming an uncomfortable hunk of plastic tubing down my throat.
On the bed in the pre-op area I was signing papers acknowledging that really gruesome things could possibly happen while I was anesthetized and undergoing the operation while one nurse was checking my oxygen level and another was attempting to slide an IV needle into my forearm.
“You have rolling veins,” she told me as she missed her stick. “You’re not well hydrated, are you?”
I wondered if pointing out that I’d been specifically warned not eat or drink a thing all day prior to the operation would make me look defensive.
“I’m going for the big guns,” said the nurse before stepping off down the hall. Moments later while I was still signing papers and getting my blood pressure checked a large African American woman strode confidentially into my bay. It was a bit of a blur but it seemed to me that she never even stopped walking before she had slid the needle into my arm all in one fluid movement.
“There you go, baby. You’re all set.”
She was a needle goddess. I felt like I should bow down before her or slaughter a pig at an alter. Instead I just waved gratefully, like the little boy calling after Shane. Soon I was rolled into the operation room and lulled to sleep with anesthesia and the relaxing hallucinogenic sounds of Strawberry Fields Forever.
There were two reasons for this bronchoscopy. One was exploratory. The pulmonologist was going in to see if there was anything he could do to shore up my lungs where they have collapsed in certain areas. My oncologist had asked if it were possible to stent any of the airways. A secondary reason for the procedure was to get tumor tissue from my lungs to be sent to a lab for analysis.
Dena and I had long flirted with the idea of having my disease molecularly tested. Molecular testing – looking for certain biological markers that might reveal your disease to be unexpectedly sensitive to certain treatments – is a promising development in the growing trend toward “personalized medicine.” Personalized medicine seeks to discover which treatment regimens will best attack your personal disease. Cancer is not cancer is not cancer. Not even kidney cancer is kidney cancer. Two patients can have kidney cancer but they can be very different in how they respond – or don’t – to certain drug therapies. For example, many patients are automatically put on the drug Sutent. Why? Well, according to the medical community: Why not? There is no good answer other than Sutent has had the most success with the most kidney cancer patients. However, every patient responds differently to the drugs. One may indeed respond to Sutent; another fails it almost immediately. (I failed it.) This same patient can then be put on another similar drug and it works fabulously. Doctors have no idea why. Sequencing cancer treatments, especially with kidney cancer, are largely a trial-and-error process. Although still in its infancy, molecular testing attempts to get past trial and error by analyzing the proteins, enzymes and genes of your cancer cells that may offer clues about which therapy your disease may respond to.
Molecular testing can be used in two ways. One is to help determine, from the outset, which treatment therapies might work best for your disease. There is a demographic of kidney cancer and melanoma patients, for example, who respond well to the drug IL-2. It is a small demographic, only about eight percent. The treatment side effects of IL-2 are brutal, yet the drug has the potential to scale the Olympus of cancer treatments – No Evidence of Disease (NED), the closest thing you’re going to get to a cure with kidney cancer. The goal of personalized medicine is to find a way to determine which treatments will work for which patients. If molecular analysis of your tumor shows that your disease will not be particularly responsive to IL-2, then why undergo the difficult treatment and severe toxicity which IL-2 introduces to the body? If, on the other hand, your cancer may be responsive, aren’t the side effects worth it? They would be to me. (Hell, I underwent IL-2 without having any clue as to whether it work. It didn’t.) Similarly, if analysis shows your tumor to be responsive to Votrient, then skip the standard “first-line” therapy of Sutent and go straight for the Votrient. Save yourself months of trial and error and unnecessary toxicity.
The second way molecular testing can be used is to discover a potential drug therapy that may work for you that is outside the normal channels. To paraphrase oncologist Mike Janicek, a gynecologic oncologist at US Oncology: Before, we’d use empiric medicine. We’d guess as to what would work. That’s not good enough. Molecular testing offers greater insights that allow us to think outside the box and go above and beyond the normal drug therapies, most of which have already been exhausted for many patients.
For a good overview of molecular profiling by an oncologist, visit the Cancer Treatment Centers of America website to watch a brief video by Dr. Ritwick Panicker.
All of this sounds great in concept. The problem is that the science is still very young. As many a researcher has put it: We’re not there yet. But the promise is undeniable. Personalized medicine is the future of oncology.
So why am I doing it now if the science is still so young? The answer – as with so many things cancer: Why not? It’s worked for other patients. I have been through two major surgeries, multiple lesser procedures and eight different treatment therapies. None of which has worked for any extended period of time. I have no clear options left. We’ve run out of the regular, and even some of the irregular, treatments. We are told that traditional chemotherapy does not work on kidney cancer, and that seems to hold true for most patients. However, a few have responded. Why? Again, nobody knows. There is the possibility that this test could reveal something, something we and our oncologists haven’t seen. We’re searching for the “out of the box” thinking that Dr. Janicek referenced.
We are working with Caris Life Sciences, based in Arizona. The company’s website reads: “Caris Life Sciences uses multiple tumor profiling technologies in order to detect and interrogate each biomarker.” Which, frankly, sounds like an ACLU lawsuit waiting to happen. Profiling and interrogation are two words you never want to see in the same sentence. I’m afraid I may be pulled over for Driving While Diseased. Nontheless, they have good people working for them and even flew one of their representatives to Johns Hopkins so he could pick up the tissue sample personally the moment it came out of my body and return it to the lab for analysis. With sample in hand at the lab, Caris will perform a tumor analysis and then compare its results with data from thousands of clinical research trials hoping to identify a treatment that will prove responsive to my disease.
I’m awake from my bronchoscopy. Suddenly. I know this because I seem to take my first breath and then descend into an inferno of coughing. With every single inhale, I’m coughing violently. I notice a device on my bed that looks a little like something you’d find in the dentist’s office, something to wisk away water and saliva. Only this is for bloody gunk – sputum, to use the icky medical term. As you’re coughing up parts of your windpipe, the nurse sticks this plastic gun in your mouth and pulls the trigger. It vacuums up whatever’s there.
I keep coughing. Violently. It’s not unexpected. Still, it’s unpleasant.
My recovery for this, my fourth bronchoscopy, is the weakest yet. I lay in the bed in the post-operative bay coughing and feeling generally miserable. Over time though the coughing recedes and I begin to gather some information. The pulmonologist was unable to insert any stents to try to defend against the areas of my lung where they have collapsed. This will be a permanent new part of my daily life. If I had trouble exerting too much energy before, I can expect to be even more winded now.
The good news is that the pulmonologist was able to extract enough tumor tissue for the Caris folks to do their work. All I can do now is wait and pray and hope. We expect to hear back from Caris within the week. If the testing turns up nothing, then we’ll have some tough decisions to make. As Dena pointed out in her last blog, though, we plan to set those big questions aside for a while and instead relax with family on Tybee Island off the coast of Savannah. Watching your children dash giggling to the edge of the ocean water and then flee in panic from the waves has a way of setting things in perspective. And we’ll need a lot of perspective in the coming weeks.
“Yank these needles out of my arm,” I tell the nurse. “I’m ready to go home.”