Burned
Thirty-three-year-old top chef. Stage-four cancer of the tongue. Grant Achatz has been to hell—and back
(page 4 of 6)
In this age of high-tech cures, the University of Chicago Cancer Research Center, widely considered one of the most progressive in the country, seems quaintly removed, headquartered as it is in the aging Gothic architecture of a sprawling multiwing building that includes the hospital, numerous laboratories, and the medical school. Everett Vokes, its deputy director, is one of an army of oncologists there who treat patients in a way that is intertwined with clinical investigation. A head-and-neck and lung cancer specialist who had moved to Chicago from Germany to do his post-medical school residency, Vokes joined the medical school faculty at the U. of C. in 1986 and three years later became the director of clinical research for oncology and hematology, which seeks out new treatments for cancer and blood-related diseases and brings them to the research center's patient population for testing. He has since cycled through a number of prominent posts there and currently also serves as the section chief for hematology and oncology.
Despite being initially buoyed to hear about an alternative treatment, Achatz was not optimistic. "What's the point?" he asked Kokonas. "We've been to three of the best doctors." By the next day, Achatz had decided not to go to the U. of C. "I basically dragged his ass over there," Kokonas says.
The meeting was a revelation. Vokes and his team weighed the options with their prospective patient. On the one hand, there was surgery. "Grant said to us, 'No matter what happens, I don't want to have my tongue cut out,' " recalls Elizabeth Blair, the surgeon on the team. "I understand, but [the patient's preference is] not necessarily what drives us." The first goal, they told him, was to save his life and cure the cancer. The survival rate after five years for this kind of advanced oral cancer is less than 50 percent, killing possibly as many as two of every three. But Vokes thought he and his team—including Blair and Daniel Haraf, the chief radiation oncologist—had a reasonable shot at organ preservation.
One of their active trials appeared to be a good fit: A relatively new drug had earlier shown impressive results in shrinking head-and-neck tumors when combined with radiation, and also when combined with conventional chemotherapy. Now, the question was, Would this drug, called Erbitux (generically known as cetuximab), work even better when applied throughout the treatment procedure. In other words, Achatz would first undergo chemotherapy with Erbitux added; then, radiation with Erbitux and chemotherapy added. If this heavily loaded combination therapy worked as they hoped, the tumor might disappear altogether and surgery would be necessary only to remove the remaining diseased lymph nodes.
Erbitux is one of several in a class of new drugs known as targeted therapies; specifically, Erbitux is what's called a monoclonal antibody. First produced in the laboratory by two British scientists in 1975, a monoclonal antibody is a copied version of a protein that interferes with a specific cell function by blocking a receptor like "sticking gum in a lock," in the words of its primary U.S. innovator, John Mendelsohn. As a group, such targeted therapies—including interferon—were hyped in the late 1980s as a "magic bullet," relying as they did so elegantly on microbiological mechanisms to undermine a cancer cell's ability to reproduce, repair damage, or maintain its blood supply. More recently, Erbitux had entered the public consciousness in 2002 when the drug came up in the insider-trading scandal involving Martha Stewart and the selling of her shares in ImClone, the then-obscure biotech company devoted entirely to the development and sale of Erbitux.
To the doctors, the chef was no different from any other person entering the trial: While the approach to his case would be tailored to his needs as an individual, once Achatz signed on, his course of treatment would strictly follow an established regimen. In his favor, Achatz was young and in good health otherwise. But entering the trial was not without risk. First, Achatz might not respond to the drug. Or, more urgently, he could have side effects that might delay surgery or make continued treatment more difficult or impossible. And because Achatz had no known risk factors, Vokes says, there was some trepidation about whether he would respond to the treatment in the ways they expected. "With a case like this, you don't really know for sure if you can apply everything you know with the same certainty," he says, adding that outcome statistics for cure, relapse, and mortality are more predictive for patients who fit the majority profile. That said, Vokes told Achatz that the survival rate so far appeared to hover at around 70 percent of participants in comparable studies. "So, limited surgery and a higher success rate," Achatz remembers thinking. "Where do I sign?" A week later, he started treatment.
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Reader Comments:
This is a hell of a story. Thanks for sharing it in such a clear, unsentimental way. It's impossible not to root for the guy.
Amazing story. Really nice guy.
Thanks U of C for continuing to push the envelope.
This story is very important in stressing to people of all ages to have a regular oral cancer exam. Please ask your dentist to do so at your next visit. If they don't do it regularly, perhaps you should find a dentist who does. It may save your health or even your life.
Many more people die from oral cancers that cervical cancer. There are now simple, inexpensive screening tests using dyes, or lights, or painless tissue sampling that should be done annually.
When enough patients demand that insurance companies cover these tests, they will eventually cover the costs, as happened with Pap smear testing years ago.
Early detection is the key to successful treatment.
Greg Weathers, DDS
I told my daughter in CA about this wonderful article, in the hope that a friend of her's out there who has a similar disease could benefit from reading this and perhaps find some hope---even if it's making an appt with this miracle physician. God bless you for articles such as these---and my best wishes and prayers to the Chef!
This article has so many good examples of the difficulties cancer causes that it should be read by everyone from 9th grade on to learn how persons with the best intentions can be wrong, can rely on wrong information, disagree as to what they see or know and how much depends on luck and courage.
Hi there,
My name is Kate and I amd 34 and was diagnosed with tongue cancer in Febuary 2007. I am a non smoker and only drink socially- just wine and beer. I too am a very unusual case.
I had a near total glossectomy with 2 skin grafts 3 rounds of cisplatin and 33 rounds of imrt. I finished last May and I had been cancer free since then. I am back to working full time since July of 2007.
My recovery has been very difficult. I can speak fairly well.I do not sound like I am "grunting" when I talk. I have aspeechimpediment but I communicate fairly well with my friends co-workers My doctors would say I am 90% intelligable. I even talk on the phone. Yes it is true that many full glossectomy patietns do have to rely on a feeding tube and or can only drink thier food but it is not true for every person. Also- there are tastebuds all over the oral cavity- the tastebuds are not just on the tongue. The sense of smell plays a large part of taste.
It as a very arduus process to relearn to eat but I got my feeeding tube removed in August of 2007 now I eat almost everything I want to and almost like a regular person. I just need lots of water and I have to take small bites. I taste really well. I don't get to enjoy food for as long as I used to and its not 100 percent but its pretty good. I live in San Francisco and eat out ALL THE TIME. I eat at plenty of trendy fancy places just like Alinea and enjoy them thoroughly!
I hope that Grant's response to his treatment is 100 percent successful but the alternative treatment isn't neccesarily as horrific as you have portrayed it here. Many Physicians feel that my treatment plan was the best option so that I could live.
Maybe my experience response and recovery is one in a million. I don't know. Maybe you could all have dinner and you write a followup article to this?
Grant if you are reading this I plan to visit Chicago this summer. Iwill be CALLING and making a reservation. So you better be on top of your game the night I come in!
Sincerely,
KATE BROWN
It was great to read this article. He has been on my mind since I first heard of his diagnosis. As he was beginning his treatment at U of C. my Daughter Christa was being seen and had since Jan '07 undergone chemo (Erbitux, cisplatin) and 35 treatments of IMRT. The Doctors felt the tumor to be gone! However, residual was found.....U of Wisc. Surgeon attempted surgery unsuccessfully, because tumor had wrapped itself around her carotid artery. We saw the Drs. at U of C and she was scheduled for a major reconstruction which margins were clear on! But,she lost her tongue and had various complications following the surgery. Then began 'clean up' radiation and chemo. Only to find that the tumor cells had traveled and grew rapidly. She lost her 10month battle on November 5th. It is an evil ugly disease. She had only found a small sore on her tongue then suddenly was a big cancer tumor! Her only initial symptom, in retrospect was a pressure in her ear and soreness at the TMJ, then this sore believed, also to be her chewing on her tongue!
PLEASE, if we can only get this information out there for all! This disease is being seen in young, no risk people more and more frequently, with devastating consequences. Christa also had become quite close friends with Kate Brown from SF, on the Oral Cancer Foundation site. They became deeply bonded in their battles against this evil disease.
PLEASE, IF ANY SYMPTOMS, INCLUDING EAR PRESSURE, SORES APPEAR...DON'T SETTLE FOR THE DIAGNOSIS OF CHEWING ON IT, SINUS TROUBLE...PURSUE TILL YOU ABSOLUTELY KNOW IT IS NOT ORAL CANCER!!! PREPARE FOR THE WORST AND HOPE FOR THE BEST.
Sincerly, Linda Jones
OH! Christa was only 31 years old, with a 2 year old daughter and soulmate husband. Absolutely no risk factors for her either! The Doctors at U of Chicago are wonderful, and at the cutting edge of treatment.
I was diagnosed on Jan. 10th, 2008, with Squamous Cell Carcinoma at the base of my tongue. I had Cisplatin and 60 radiation treatments (2 per day/30 days) and the doctors are pleased with the tumor reduction. However, I will have surgery (I'm waiting on a date) to remove what remains. I already have a feed tube (for 1 month) and they will go ahead a perform a trache at the time of surgery due to the anticipated swelling. I am a 51 year old male in Jacksonville, Florida who could use your prayers. :)