radiation

Mayo Clinic Q and A: Throat cancer symptoms

Source: newsnetwork.mayoclinic.org
Author: Dr. Eric Moore, Otorhinolaryngology, Mayo Clinic

DEAR MAYO CLINIC: Are there early signs of throat cancer, or is it typically not found until its late stages? How is it treated?

ANSWER: The throat includes several important structures that are relied on every minute of the day and night to breathe, swallow and speak. Unfortunately, cancer can involve any, and sometimes all, of these structures. The symptoms of cancer, how early these symptoms are recognized and how the cancer is treated depend on which structures are involved.

All of the passageway between your tongue and your esophagus can be considered the throat. It includes three main areas. The first is the base of your tongue and tonsils. These, along with the soft palate and upper side walls of the pharynx, are called the oropharynx. Second is the voice box, or larynx. It consists of the epiglottis — a cartilage flap that helps to close your windpipe, or trachea, when you swallow — and the vocal cords. Third is the hypopharynx. That includes the bottom sidewalls and the back of the throat before the opening of the esophagus.

Tumors that occur in these three areas have different symptoms, behave differently and often are treated differently. That’s why the areas of the throat are subdivided into separate sections by the head and neck surgeons who diagnose and treat them.

For example, in the oropharynx, most tumors are squamous cell carcinoma. Most are caused by HPV, although smoking and alcohol can play a role in causing some of these tumors. Cancer that occurs in this area, particularly when caused by HPV, grows slowly ─ usually over a number of months. It often does not cause pain, interfere with swallowing or speaking, or have many other symptoms.

Most people discover cancer in the oropharynx when they notice a mass in their neck that’s a result of the cancer spreading to a lymph node. Eighty percent of people with cancer that affects the tonsils and base of tongue are not diagnosed until the cancer moves into the lymph nodes.

This type of cancer responds well to therapy, however, and is highly treatable even in an advanced stage. At Mayo Clinic, most tonsil and base of tongue cancers are treated by removing the cancer and affected lymph nodes with robotic surgery, followed by radiation therapy. This treatment attains excellent outcomes without sacrificing a person’s ability to swallow.

When cancer affects the voice box, it often affects speech. People usually notice hoarseness in their voice soon after the cancer starts. Because of that, many cases of this cancer are detected at an early stage. People with hoarseness that lasts for six weeks should get an exam by an otolaryngologist who specializes in head and neck cancer treatment, as early treatment of voice box cancer is much more effective than treatment in the later stages.

Early voice box cancer is treated with surgery — often laser surgery — or radiation therapy. Both are highly effective. If left untreated, voice box cancer can grow and destroy more of the larynx. At that point, treatment usually includes major surgery, along with radiation and chemotherapy ─ often at great cost to speech and swallowing function.

Finally, cancer of the hypopharynx usually involves symptoms such as pain when swallowing and difficulty swallowing solid food. It is most common in people with a long history of tobacco smoking and daily alcohol consumption. This cancer almost always presents in an advanced stage. Treatment is usually a combination of surgery, chemotherapy and radiation therapy.

If you are concerned about the possibility of any of these cancers, or if you notice symptoms that affect your speech or swallowing, make an appointment for an evaluation. The earlier cancer is diagnosed, the better the chances for successful treatment. — Dr. Eric Moore, Otorhinolaryngology, Mayo Clinic, Rochester, Minnesota

Symptoms of throat cancer depend on which throat structures are affected

Source: tribunecontentagency.com
Author: Eric Moore, M.D.

Dear Mayo Clinic: Are there early signs of throat cancer, or is it typically not found until its late stages? How is it treated?

Answer: The throat includes several important structures that are relied on every minute of the day and night to breathe, swallow and speak. Unfortunately, cancer can involve any, and sometimes all, of these structures. The symptoms of cancer, how early these symptoms are recognized and how the cancer is treated depend on which structures are involved.

All of the passageway between your tongue and your esophagus can be considered the throat. It includes three main areas. The first is the base of your tongue and tonsils. These, along with the soft palate and upper side walls of the pharynx, are called the oropharynx. Second is the voice box, or larynx. It consists of the epiglottis — a cartilage flap that helps to close your windpipe, or trachea, when you swallow — and the vocal cords. Third is the hypopharynx. That includes the bottom sidewalls and the back of the throat before the opening of the esophagus.

Tumors that occur in these three areas have different symptoms, behave differently and often are treated differently. That’s why the areas of the throat are subdivided into separate sections by the head and neck surgeons who diagnose and treat them.

For example, in the oropharynx, most tumors are squamous cell carcinoma. Most are caused by HPV, although smoking and alcohol can play a role in causing some of these tumors. Cancer that occurs in this area, particularly when caused by HPV, grows slowly usually over a number of months. It often does not cause pain, interfere with swallowing or speaking, or have many other symptoms.

Most people discover cancer in the oropharynx when they notice a mass in their neck that’s a result of the cancer spreading to a lymph node. Eighty percent of people with cancer that affects the tonsils and base of tongue are not diagnosed until the cancer moves into the lymph nodes.

This type of cancer responds well to therapy, however, and is highly treatable even in an advanced stage. At Mayo Clinic, most tonsil and base of tongue cancers are treated by removing the cancer and affected lymph nodes with robotic surgery, followed by radiation therapy. This treatment attains excellent outcomes without sacrificing a person’s ability to swallow.

When cancer affects the voice box, it often affects speech. People usually notice hoarseness in their voice soon after the cancer starts. Because of that, many cases of this cancer are detected at an early stage. People with hoarseness that lasts for six weeks should get an exam by an otolaryngologist who specializes in head and neck cancer treatment, as early treatment of voice box cancer is much more effective than treatment in the later stages.

Early voice box cancer is treated with surgery — often laser surgery — or radiation therapy. Both are highly effective. If left untreated, voice box cancer can grow and destroy more of the larynx. At that point, treatment usually includes major surgery, along with radiation and chemotherapy — often at great cost to speech and swallowing function.

Finally, cancer of the hypopharynx usually involves symptoms such as pain when swallowing and difficulty swallowing solid food. It is most common in people with a long history of tobacco smoking and daily alcohol consumption. This cancer almost always presents in an advanced stage. Treatment is usually a combination of surgery, chemotherapy and radiation therapy.

If you are concerned about the possibility of any of these cancers, or if you notice symptoms that affect your speech or swallowing, make an appointment for an evaluation. The earlier cancer is diagnosed, the better the chances for successful treatment. — Eric Moore, M.D., Otorhinolaryngology, Mayo Clinic, Rochester, Minn.

Note: For information, visit www.mayoclinic.org

Jay Fund will forever remain dear to heart of ESPN’s Mortensen

Source: staugustine.com
Author: Gene Frenette

Chris Mortensen remembers the moment last May when his own cancer journey reminded him why he had been coming to Tom Coughlin’s Jay Fund benefit dinner/golf tournament for the previous 15 years.

As Mortensen waited in line to receive his proton radiation treatment at the MD Anderson Cancer Center in Houston, the NFL information insider for ESPN saw a man ahead of him dressed in jeans and work boots strapped to a gurney, holding his 3-year-old son.

“He’s going into the very scary radiation proton room,” said Mortensen. “You have to be in there to understand how intimidating a place it can be, even more so for a child. That’s when I thought of the Jay Fund.

“There’s a dad, who clearly took off from work, with his son who looks sick and scared. It made me think, ‘That’s what the Jay Fund is about, helping families tend to the needs of their children who are suffering from this.’ That was the moment it connected with me.”

Mortensen, diagnosed 17 months ago with Stage IV throat cancer, is now himself an indirect beneficiary of what the Jay Fund does to provide financial/emotional support to pediatric cancer victims and their families. As the man known as Mort learned in his own battle, which metastasized into his lungs in November, he draws inspiration from watching kids fight this terrible disease with an upbeat attitude.

“What I saw at MD Anderson was great humanity, the promise of young people of all nationalities,” said Mortensen. “Not just the patients, but the support of their caregivers. You’re seeing all kinds of pediatric patients and families fight this battle. Now I have a clear image and picture of what they’re feeling.”

Mortensen, 65, remains in the fight of his life to return to the ESPN airwaves for the start of the 2017 football season. He’s been through chemotherapy and the standard 35 radiation treatments. Mortensen thought he was on the cusp of remission last August, until a biopsy in November revealed the cancer had spread into his lungs.

NFL referee Tony Corrente, a throat cancer survivor who had the same oncologist as Mortensen , had forewarned him early on about the challenges he’d be facing.

“[Corrente] said you’re going to go through a period in radiation where you’re going to feel you had the worst strep throat ever in you life times 100,” said Moretensen, whose weight plummeted down to a low of 142 pounds, which he has mostly regained. “And when you’re done with radiation, it’s going to get worse for the next three or four months, which it did.”

Though he can’t play golf due to impending hernia surgery, Mortensen was determined not to miss the Jay Fund event this year. It motivates him to be around people dedicated to a cause, now closer to his heart than he could have imagined a short time ago.

Sunday night at the Jay Fund dinner, Mortensen was touched when he saw 22-year-old cancer survivor Marissa Ierna speak about her battle with rhabdomyosarcoma, which inflicted the lower calf muscles of her legs.

Mortensen, who met Ierna briefly two years ago when they sat at the same table as she received a Jay Fund scholarship, received an email from her right after his cancer diagnosis. Among the hundreds of correspondences of encouragement sent to Mortensen during his battle, it was the words from Ierna on January 19, 2016 that stuck with him the most.

Here is a partial transcript of Ierna’s email to Mortensen: “I want to first say how sorry I am to hear about your recent diagnosis. It took me a while to learn that in order to get through the chemo and all the hard days, I had to keep a smile on my face and always have a positive attitude. I wish I would have known that earlier in treatment, it would have made the first few months a lot easier. As you start treatment, just remember to keep a positive attitude and always stay strong.

“I am very thankful to cancer for all it has provided me. I know this sounds crazy, but it has changed my life for the better. I encourage you to take this terrible disease and turn it into something amazing! The toughest battles are given to the strongest warriors, which means you can do this!”

Now imagine a man in his mid-60s, fresh off a cancer diagnosis, reading that from a young woman he met only briefly at a Jay Fund dinner. It uplifted Mortensen beyond measure, especially when cancer was beating him down.

So when Mortensen heard Ierna’s message to the Jay Fund audience on Sunday, the memory of that email moved him to tears all over again.

“Kids in a cancer unit are just so dang resilient, they actually inspire you,” Mortensen said. “Everybody goes through the fear of cancer on some level, and Marissa’s note was one of the most memorable.

“I read it once or twice all over again when I was in the dark shadows of my cancer journey. I was more emotional listening to her [at the Jay Fund dinner] because it hit me deeper. You couldn’t meet Marissa with that unforgettable smile, hear her story, and ever forget her.”

Ierna recently graduated from Florida State with a marketing degree and just took a job working with the Jay Fund. An avid runner, she’s approaching four years in remission and just ran the Boston Marathon in 3:28.31.

“My oncologist told me I’d never be able to run again any more than five miles because of the radiation in my leg, making me prone to stress fractures,” Ierna said.

A hard tumor was wrapped around her leg muscles, and the cancer in her bone marrow showed it advanced to Stage IV, just like Mortensen.

Ierna, an Atlantic Coast High graduate, credits the Jay Fund for providing her parents and younger brother with the emotional support they needed to cope through her illness. She’s been paying it forward ever since, making it her personal mission to help others like Mortensen in the same predicament.

It’s still unclear what the outcome will be for Mortensen. Acting on a tip from Coughlin, he’s battling the cancer in his lungs with immunotherapy, a treatment option with less intense side effects than chemo or radiation.

The 26-year ESPN employee has most of his voice and hair back, but his saliva glands aren’t yet fully restored to easily get him through 30-second sound bites. He’s hopeful another three months of down time before the season starts will advance the healing process, allowing him to return to full-time duty for Sunday Night and Monday Night Countdown shows.

Mortensen has seen the ravages of cancer up close, how it initially “crushed” his wife Micki and struck fear in so many kids during cancer treatment visits. He has gained an even greater appreciation for Coughlin’s charity, which has delivered over $8 million in grants during its 22-year existence.

But the Jay Fund is about more than just providing families financial assistance. It’s also about cancer survivors emotionally lifting up the next patient.

As Chris Mortensen discovered on his cancer journey, you can never be too old to be inspired by the young.

Changing definition of margin status for oral cancer

Source: www.medpagetoday.com
Author: staff

Data cast doubt on 5-mm standard, use of frozen sections

A commonly used metric for defining a close surgical margin for resected oral-cavity tumors failed to identify adequately the patients at increased risk of recurrence, a retrospective review of 432 cases showed.

The analysis showed an inverse relationship with increasing distance between invasive tumor and inked main specimen margin on the main specimen, but results of a receiver operating characteristic curve analysis identified a cutoff of < 1 mm as most appropriate for classifying patients as having a high risk of local recurrence, as opposed to the more commonly used cutoff of 5 mm.

The analysis also showed that resection of tissue beyond 1 mm on intraoperative frozen section did not improve local disease control, as reported online in JAMA Otolaryngology-Head and Neck Cancer.

“The commonly used cutoff of 5 mm for a close margin lacks an evidential basis in predicting local recurrence,” Steven M. Sperry, MD, of the University of Iowa in Iowa City, and colleagues concluded. “Invasive tumor within 1 mm of the permanent specimen margin is associated with a significantly higher local recurrence risk, though there is no significant difference for greater distances.

“This study suggests that a cutoff of less than 1 mm identifies patients at increased local recurrence risk who may benefit from additional treatment. Analysis of the tumor specimen, rather than the tumor bed, is necessary for this determination.”

The results add to a growing volume of evidence that margins <5 mm can still be curative, said Michael Burkey, MD, of the Cleveland Clinic, who was not involved in the study. The data also add to evidence that the margins calculated from the main specimen are more predictive than frozen-section margins that many head and neck surgeons have used for years.

“This doesn’t change the fact that clearly getting all the tumor out and clearing margins microscopically are still critical to curative surgery,” Burkey told MedPage Today. “The study provided good data to show that when they got positive margins, even if they subsequently treated with radiation therapy, that led to no improvement in local recurrence.”

“A second key point is that the way we determine the adequacy of surgery is changing,” he added. “We used to say 5 mm, and now it’s probably 1 to 2 mm. More and more we’re finding that the best way to look at margins is off the main specimen, not by taking frozen sections from the tumor bed.”

Despite widespread use in surgical management of head and neck cancers, interpretation of margin status and associated prognostic implications remain imprecise. A survey of head and neck surgeons showed that 83% of respondents considered carcinoma in situ as a positive margin and 17% included dysplasia in the definition. Additionally, 69% of the surgeons used a cutoff of <5 mm between invasive tumor and resection margin to a close margin, consistent with multiple reports in the literature. However, other literature suggested a smaller-distance cutoff is adequate, Sperry’s group noted.

To continue an investigation of the clinical significance and impact of surgical margins in oral-cavity cancer, the authors retrospectively reviewed results in 432 consecutive patients with primary oral-cavity squamous cell carcinoma treated at the University of Iowa from 2005 to 2014. Patients with recurrent disease were excluded from the analysis. The primary outcome was local recurrence as determined by minimum distance in millimeters between invasive tumor and inked main specimen margin.

The patients had a median age of 62, and men accounted for 58% of the study population. T-stage distribution consisted of T1 disease in 45% of patients, T2 in 21%, and T3/4 in 34%. Subsite location was tongue in 45%, alveolus in 21%, floor of the mouth in 18%, and other in 15%.

Rates of local recurrence by margin status were:
44% for microscopic positive margins
28% for margins <1 mm
17% for 1-mm margins
13% for 2-mm and 3-mm margins
14% for 4-mm margins
11% for ≥5-mm margins

“These data demonstrated an exponential inverse relationship between distance and local recurrence, with no appreciable difference in local recurrence for distances greater than 1 mm,” the authors reported.

Local recurrence also was determined on the basis of intraoperative frozen section assessment from tumor bed sampling. The analysis showed similar recurrence rates for close-margin distances between patients with involved and negative frozen sections. Among patients with a positive main specimen margin, those with an involved frozen margin had the highest local recurrence rate at 54%, as compared with 36% for patients with a negative frozen margin.

The authors analyzed the results on the basis of whether additional tissue was resected to achieve a negative margin after initial frozen section indicated cancer. The analysis incorporated collapsed margins of ≥5 mm, 1 to 5 mm, <1 mm, and positive. Success was defined as a final margin uninvolved with either invasive carcinoma or carcinoma in situ after further resection. For patients with a positive main specimen margin, successful additional resection did not improve local control.

“For patients with final margin distances grater than 0 millimeter, the local recurrence rate appeared to be the same whether a successful additional resection of the margin was performed or note,” the authors reported.

Finally, Sperry’s group analyzed local recurrence according to whether patients received adjuvant radiation therapy. For patients with a positive main specimen margin, radiotherapy did not improve local control, and the recurrence rate was the same for the other main-specimen margin categories, regardless of whether radiation therapy was administered.
Study limitations included a relatively small group of surgeons performing the majority of surgical procedures, and the inability to compare results based on different methods of intraoperative margin evaluation, such as tumor bed versus main specimen sampling, the authors noted.

Reviewed by:
Robert Jasmer, MD Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, BSN, RN, Nurse Planner

Primary Source:
JAMA Otolaryngology-Head and Neck Surgery

Source Reference: Tasche KK, et al “Definition of ‘close margin’ in oral cancer surgery and association of margin distance with local recurrence rate” JAMA Otolaryngol Head Neck Surg 2017; DOI:10.1001/jamaoto.2017.0548.

Beating HPV-positive throat cancer

Source: www.huffingtonpost.com
Author: Pamela Tom, Contributor

National Oral, Head, and Neck Cancer Awareness Week is April 12-18, 2017

For at least two years, 47 year-old Rob Clinton of Rochester, NY, would choke on post nasal drip in the shower. He knew something was wrong in his throat but he didn’t feel any pain.

Did he have cancer? Clinton smoked cigarettes for 30 years and worked in an auto body shop where he was regularly exposed to carcinogens, but he wasn’t experiencing the typical symptoms of throat cancer. These include hoarseness or a change in the voice, difficulty swallowing, a persistent sore throat, ear pain, a lump in the neck, cough, breathing problems, and unexplained weight loss.

In November 2015, Clinton went to the dentist to have his teeth cleaned. His dentist felt Clinton’s swollen neck and recommended that he visit a medical doctor. Clinton heeded the advice and sought the opinion of an ear, nose, and throat specialist at Strong Memorial Hospital in Rochester, NY.

The ENT doctor sent Clinton to have a CAT scan and when he scoped Clinton’s throat, the doctor said, “I see something in there.”

What he saw was a tumor and there were a few other things going on too.

The Diagnosis
The biopsy showed that Clinton had Stage IVa oral squamous cell carcinoma (OSCC) at the base of his tongue—and the cancer was HPV positive. HPV stands for the human papillomavirus and a recent survey found that more than 42% of Americans are infected with HPV. While most people’s bodies naturally clear HPV after two years, some people’s immune systems do not recognize the virus and consequently, HPV can harbor in the body for decades. HPV-related throat cancer has been linked to oral sex.

The Treatment
On December 4, 2015, Clinton underwent neck dissection surgery at Roswell Park Cancer Institute in Buffalo, NY. Dr. Hassan Arshad, a head and neck cancer surgeon, removed 30 lymph nodes; two had cancer and one tumor was the size of a golf ball. One lymph node on the other side of neck and a tongue tumor would be treated with radiation.

The first of 35 radiation treatments began one month later in conjunction with Cisplatin chemotherapy infusions. That’s seven weeks of simultaneous radiation and chemo.

“I drove myself to treatment for the first five weeks. Up until the last week of treatment, it wasn’t too terrible,” Clinton says. “But then I started getting tired and my mother took me to the cancer center.”

Clinton had decided not to get a feeding tube prior to or during treatment and as the radiation and chemo attacked his cancer, he began to lose weight. The treatment reduced Clinton’s appetite because foods began to taste different. For two weeks, he also felt a burning sensation in his mouth and says his saliva tasted like hot sauce.

“It was excruciating and the worst thing I dealt with during treatment.”

Furthermore when radiation makes the throat feel tender and raw, it becomes nearly impossible to eat normally through the mouth.

Clinton was 215 pounds before treatment. After treatment, he weighed in at a mere 165 pounds. A loss of 50 pounds. In hindsight, Clinton wishes he had the feeding tube inserted while he was still strong.

“Don’t be afraid of the treatment. It’s manageable and you can get through it. I recommend a feeding tube because it’s a comfort knowing you have an option,” says Clinton.

The Recovery
While it took a month for Clinton to recover from the initial surgery, doctors say it takes at least a year for HPV+ throat cancer patients to find their “new normal”—regaining strength, adapting to lingering side effects.

Following chemo, Clinton experienced “chemo brain” or “chemo fog,” known as a cognitive impairment that can occur after chemotherapy. The patient may experience memory loss or dysfunction, and have difficulty concentrating or multi-tasking.

The radiation also took its toll on Clinton. He researched and found a salve made of calendula flowers, olive oil, beeswax, and Vitamin E oil to soothe his parched skin. Trying to gain weight was a bigger challenge. First, his taste went “totally upside down” and spicy foods were intolerable.

“A vanilla cookie tasted like black pepper,” Clinton says. “Only frozen peas and parsley tasted normal.”

And dry mouth is a common result of the radiation treatment. While both sides of Clinton’s neck received radiation, he had less saliva production on his left side. At night he would have to wake up every 40 minutes to drink water. Clinton must make certain not to become dehydrated because it causes the dry mouth to worsen. Now he chews gum almost non-stop.

In his search to combat dry mouth, Clinton says he researched solutions online and found ALTENS, or acupuncture-like transcutaneous electrical nerve stimulation. A study led by Dr. Raimond Wong, an associate professor of oncology at McMaster University in Ontario, Canada, found evidence that ALTENS may reduce patient-reported xerostomia, the medical term for dry mouth.

Clinton joined Dr. Wong’s clinical trial to determine whether ALTENS for six weeks/four days a week would be as effective as treatment for 12 weeks/two times a week.

“Four days a week, the researchers put pads on the inside of my ankles, the outside of my knee, back of my hands, between my thumb and forefingers, and between my chin and bottom lip,” says Clinton.

Clinton says ALTENS felt like little shocks and the acupuncture-like stimulation improved his saliva production by 80 percent. “Even after I stopped ALTENS, my saliva kept improving,” says Clinton.

The Survivor
Two years after cancer treatment, regular PET scans show that Rob Clinton has no evidence of cancer. In fact, the prognosis for HPV-related throat cancer is 85 to 90 percent positive if caught early. In contrast, patients who battle advanced throat cancer caused by excessive smoking and alcohol have a five-year survival rate of 25 to 40 percent.

Dr. Arshad, Clinton’s surgeon at the Roswell Park Cancer Institute, explained why.

“The majority of tonsil and tongue base (“throat”) cancers are HPV-positive, but smoking is still a major risk factor. Typically, non-smoking patients with HPV-positive tonsil/tongue base cancers present with a lump in the neck, implying that the cancer has already spread to lymph nodes. This used to mean that the patient would have a reduced chance of long-term survival,” Arshad says. “We now know that for nonsmokers who have HPV-positive cancers, metastasis to lymph nodes doesn’t carry the same poor prognosis. The newest staging system reflects that change, i.e. Some of those patients who were previously classified as stage IV are now at stage II if the cancer is HPV-positive.”

Clinton is not only faring well physically, surviving cancer changed his outlook and lifestyle.

“My life is pretty much back to normal. I get a little nervous each time I get a PET scan but so far, it shows I am free of cancer,” Clinton says. “I have a better appreciation of things. I live healthy in terms of diet and recreation. I don’t smoke or drink heavily.”

The Future of HPV+ Oropharyngeal Cancer
De-stigmatizing HPV is a key component to building public awareness and acceptance of HPV infection, and the ability to recognize the early symptoms of HPV-related throat cancer. As more and more people are diagnosed with HPV-related throat cancer, the social stigma surrounding the virus is a disturbing deterrent because HPV cancer patients are often reticent to disclose the HPV connection.

In a 2015 public service announcement, actor Michael Douglas who was treated HPV+ base of tongue cancer called for oral screenings but never said “HPV” by name. “A very common virus, one responsible for the vast majority of cervical cancers is now identified as the cause of this rapid rise in oral cancers,” said Douglas.

In the early years of the AIDS crisis, people associated infection with illness, fear, and death. It took a decade to generate a movement and begin to change the public sentiment. Now after continual education, AIDS is accepted and the focus centers on hope instead of ostracization.

Clinton hopes more people will accept that HPV infection is common—the most common sexually-transmitted infection in the U.S., according to the CDC. The American Society of Clinical Oncologists also found that by 2020, the annual number of HPV-related oropharyngeal in nonsmoking, middle-aged men will surpass the number of cervical cancer cases.

“HPV is not a shameful thing. It’s very common. It’s just that some people can’t clear the virus from their bodies,” Clinton says. “This type of cancer is the next epidemic. I feel fortunate every day that I came through it as well as I did.”

April, 2017|Oral Cancer News|

Magnolia man joins exclusive trial in battle against cancer

Source: www.cantonrep.com
Author: Denise Sautters

Rich Bartlett is looking forward to getting back to his hobbies — woodworking and nature watching — and enjoying a good steak and potato dinner. Until then, though, he is in a fight for his life, one he plans to win.

Bartlett is a cancer patient and the first participant in a clinical trial at University Hospitals Seidman Cancer Center in Cleveland to test the safety of an immunotherapy drug — Pembrolizumab — when added to a regimen of surgery, chemotherapy and radiation therapy.

Back to the beginning
Bartlett went to the dentist in October for a checkup.

“He had a sore in his mouth he thought was an abscess,” explained his wife, Nancy Bartlett, who pointed out that, because radiation and chemo treatments cause the inside of the mouth to burn and blister, it is hard for Bartlett to talk.

“When the dentist looked at his sore, he sent Richard to a specialist in Canton, and in early November, he had a biopsy done. It came back positive for cancer.”

From there, he was referred to Dr. Pierre Lavertu, director of head and neck surgery and oncology at University Hospitals, and Dr. Chad Zender from the otolaryngology department, who did Bartlett’s surgery.

“They let us know it was serious,” said Nancy. “It had gone into the bone and the roof of the mouth, but they were not sure if it had gone into the lymph nodes. By the time we got through that appointment, it was the first part of December and (they) scheduled him for surgery on Dec. 22.”

The cancer tripled in size by then and the surgery lasted 10 hours. Doctors had to remove the tumor, all of the lymph nodes and parts of the jaw and the roof of Bartlett’s mouth.

“They harvested skin from his hand to rebuild the inside of his mouth, and took the veins and arteries and reattached everything through his (right) cheek,” she said. “He could not even have water until February because of the patch. He uses a feeding tube to eat now.”

The tube is temporary until Bartlett heals.

Clinical trial
Just before he started chemo and radiation therapies, the hospital called him about the clinical trial.

The trial is the first to use quadra-modality therapy — or four different types of therapy — against the cancer, according to Dr. Min Yao, the principal investigator.

Yao said Bartlett has squamous cell carcinoma of the oral cavity, with only a 50 percent chance of survival.

“Patients have surgery, then followed by six weeks of radiation and chemotherapy and immunotherapy,” Yao said in an email interview. “That is followed by six more months of immunotherapy, one dose every three weeks.”

Bartlett currently is in the radiation, chemotherapy and immunotherapy part of the study.

“It is too early to tell how he is responding,” said Yao. “His tumor has been resected. After the treatment, we will see them periodically with scans. Cancer often recurs in the first two years after treatment.”

Pembrolizumab originally was developed to activate the body’s immune system in the fight against melanoma. Former president Jimmy Carter was treated with the drug for his brain metastases from melanoma in 2015.

A truck driver by trade, Bartlett will undergo daily fluoride treatments for the rest of his life to protect his teeth.

“We did not realize until we got to Cleveland just how bad this was,” said Nancy. “When you have oral cancer, and they are getting ready to do radiation and chemo, you have to go have your teeth cleaned and examined and get anything done that needs to be done because radiation tends to compromise your blood flow in your mouth. That was a step we didn’t know.”

Although he was shocked to hear the outcome of that sore in his mouth, Bartlett is grateful to be a part of the trial.

“Who wouldn’t feel good about something like this? I mean, you got something that was used on Jimmy Carter, who is recovered and is now making public appearances again,” said Bartlett, who is looking forward to June when hopefully he can start eating again and enjoying his hobbies.

“I am very hopeful about this. The whole thing has been a trial. I have a dentist in Cleveland who said I was going to be in the fight of my life, and I am. I am in a huge fight. The chemotherapy is what has knocked me down the most, but I am very positive about the outcome of this.”

March, 2017|Oral Cancer News|

Silk and stem cells are being used to generate salivary glands

Source: biotechin.asia
Author: Manish Muhuri

Saliva is a watery substance secreted by the salivary glands located in the mouth. Saliva is essential for good health, as it assists in speaking, swallowing, food digestion, preventing oral infections in addition to many other tasks. Without normal salivary function the frequency of dental caries, gum disease (gingivitis), and other oral problems increases significantly.

Location and types of salivary glands in humans. Image Courtesy : Wikimedia Commons

Dysfunction or reduction in activity of salivary glands can be caused by many factors, including diabetes, radiation therapy for head and neck tumors, aging, medication side effects, and Sjögren’s syndrome.

Sjogren’s is an autoimmune disease where the body attacks its own tear ducts and salivary glands. Patients suffering from this disease have severely dry mouth. No treatments are currently available for dry mouth. Salivary glands, unfortunately, have very little regenerative capacity.

The title must have left you wondering about the correlation between silk and saliva – what do they have in common? They are both actually part of a unique experiment going on in San Antonio, a study that could change the lives of millions of people who suffer from dry mouth.

Chih-Ko Yeh , BDS, Ph.D., and Xiao-Dong Chen, MD, MS, Ph.D., of the UT Health San Antonio School of Dentistry decided there had to be a better way to help people than try to develop drugs and figured that stem cells may help solve a common, painful problem.

Yeh said the idea is to use stem cells from the patient’s own body derived from bone marrow to grow new salivary gland cells. In order to coax those stem cells into becoming the right kind of cell, researchers are using silk from worms and spiders as scaffolding.

Silk is a natural protein that mimics the micro-environment of the salivary gland. Silk works well, the scientists say, because it’s biodegradable, flexible and porous, providing easy access to the oxygen and nutrition the cells need to grow. Chen and his partner are using rats to test out ways to place the cells in the body to jump-start tissue repair.

“Then we can deliver those cells to a damaged salivary gland by injection, local injection,” Chen explained.

Yeh and Chen’s early work was published in the journal Tissue Engineering.

Experts said this leap into regenerative medicine is intriguing while patients like Willette are holding out hope. “There’s no reason why they shouldn’t be able to find something to help with this,” Willette said.

In 2016, the researchers received a grant of more than a million dollars from the National Institute of Dental and Craniofacial Research (part of the National Institutes of Health) to continue their promising work.

January, 2017|Oral Cancer News|

Reducing Radiation Successfully Treats HPV-Positive Oropharynx Cancers and Minimizes Side Effects

Source: Yale Cancer Center, http://www.newswise.com/articles/reducing-radiation-successfully-treats-hpv-positive-oropharynx-cancers-and-minimizes-side-effects

Released: 12/26/2016

Newswise — Human papillomavirus-positive oropharynx cancers (cancers of the tonsils and back of the throat) are on rise. After radiation treatment, patients often experience severe, lifelong swallowing, eating, and nutritional issues. However, new clinical trial research shows reducing radiation for some patients with HPV-associated oropharyngeal squamous cell carcinomas can maintain high cure rates while sparing some of these late toxicities.

“We found there are some patients have very high cure rates with reduced doses of radiation,” said Barbara Burtness, MD, Professor of Medicine (Medical Oncology), Yale Cancer Center, Disease Research Team Leader for the Head and Neck Cancers Program at Smilow Cancer Hospital, and the chair of the ECOG-ACRIN head and neck committee. “Radiation dose reduction resulted in significantly improved swallowing and nutritional status,” she said.

The study, published in the December 26 issue of the Journal of Clinical Oncology, showed that patients treated with reduced radiation had less difficulty swallowing solids (40 percent versus 89 percent of patients treated with standard doses of radiation) or impaired nutrition (10 percent versus 44 percent of patients treated with regular doses of radiation).

“Today, many younger patients are presenting with HPV-associated squamous cell carcinoma of the oropharynx,” said Dr. Burtness. “And while traditional chemoradiation has demonstrated good tumor control and survival rates for patients, too often they encounter unpleasant outcomes that can include difficulty swallowing solid foods, impaired nutrition, aspiration and feeding tube dependence,” said Dr. Burtness. “Younger patients may have to deal with these side effects for decades after cancer treatment. We want to help improve our patients’ quality of life.”

The study included 80 patients from 16 ECOG-ACRIN Cancer Research Group sites who had stage three or four HPV-positive squamous cell carcinoma of the oropharynx, and were candidates for surgery. Eligible patients received three courses of induction chemotherapy with the drugs cisplatin, paclitaxel, and cetuximab. Patients with good clinical response then received reduced radiation.

Study results also showed that patients who had a history of smoking less than 10 packs of cigarettes a year had a very high disease control compared with heavy smokers.

 

Other authors on the paper include: Shanthi Marur (Johns Hopkins Medicine) and Anthony Cmelak (Vanderbilt University).

“This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.”

January, 2017|Oral Cancer News|

Why won’t our doctors face up to the dangers of radiotherapy?

Source: http://www.dailymail.co.uk/health/article-1089091/Why-wont-doctors-face-dangers-radiotherapy.html

Author: Isla Whitcroft

It’s a life-saver for thousands – but the side-effects can be devastating.

A year after he’d undergone treatment for cancer of the tonsils, Richard Wayman felt a painful tingling in his legs. Within weeks, the 59-year- old shopkeeper was struggling to walk. He was admitted to hospital, where doctors carried out scans, X-rays and tests.

‘The scans revealed lesions on my lungs, which raised fears that the cancer had spread, so I was admitted to another hospital for a biopsy and, as a result, contracted MRSA and pneumonia,’ recalls Richard, from Colchester in Essex.

‘From 11-and-a-half stone I went down to eight-and-a-half stone. I thought I was never going to get out of there.’

Finally, the lung lesions were diagnosed as a side-effect of the radiotherapy Richard had undergone for his cancer. However, his problems only got worse: a few weeks after a routine tooth extraction, the bone around the extraction started to crumble and become infected.

Within months he had an open weeping wound, running from his lower cheek through his jaw and into his mouth. The diagnosis: bone necrosis as a direct result of radiotherapy damage to the jaw.

Richard is one of the many thousands of cancer survivors who have developed terrible conditions as a result of the radiotherapy treatment that helped save them.

Around 4 to 5 per cent of all head and neck cancer patients suffer problems with swallowing or breathing, fistulas (open holes) in the jaw and gum, loss of taste and hearing.

But the problem is not unique to these cancers. Up to 10 per cent of breast cancer patients suffer radiation damage to their heart, lungs or the nerves to the arms (leading to loss of circulation and movement).

Every year, another 6,000 patients who’ve had pelvic radiotherapy treatment for conditions such as bowel cancer suffer long-term damage (including incontinence). A thousand of these patients go on to suffer even worse problems, such as intestinal failure or heavy bleeding.

It is clear that radiation damage is a significant health care issue. Yet, to date, there has been no national attempt to collate statistics that would enable any significant research work to begin.

Remarkably, it is not even officially classified as a specific medical condition; nor is there any definitive information on how to deal with it.

As a result, when it comes to treating the problems, patients can be offered a mix of options. Some are treated by a urologist, others are referred to a gastroenterologist, or an ear, nose and throat expert, while women often see a gynaecologist. This means many people will go undiagnosed for months and often years.

‘Until recently, radiotherapy damage has not been a priority in the treatment of cancer,’ says oncologist Paul Cornes, who runs clinics for patients with radiotherapy damage.

‘It is not a deliberate cover up; but in the past, cancer medicine was all about the treatment and giving patients a chance of life. Now we must address quality of life after cancer.’

Dr Sylvie Delanian, a radiologist and oncologist at the Hospital St Louis in Paris, is one of the few radiologists around the world to research and treat the condition. ‘Long-term radiotherapy damage is a taboo subject,’ she argues.

‘Radiologists are often frightened to discuss the matter with patients in case they refuse treatment. There is also the feeling that “we’ve saved your life, now go away and live with the side-effects”.’

Indeed, some hospitals seem to actively discourage discussion about the subject. While we were investigating this article, one London trust refused to allow Good Health to speak to their specialist, while another major cancer centre barred us from a conference on pelvic radiotherapy damage.

Radiotherapy is an incredibly successful method of treating cancer, increasing survival rates by around 50 per cent. It works by bombarding the tumour or tumour site with X-rays to kill the dividing cancer cells. In doing so, it inevitably affects surrounding healthy cells.

But areas such as the bowel, lung and jaw seem to be more susceptible to long-term damage. The precise reason is not clear, although it is thought that the mucus which lines the bowel and the delicate sacs in the lung are extremely vulnerable.

Long-term damage can appear as fibrosis (an overgrowing of healthy cells as they go into overdrive to repair the radiotherapy damage) or necrosis (the death of the tissue, causing open holes or fistulas).

Radiotherapy can also damage nerves, reducing blood circulation or causing breathing difficulties, with side-effects often not appearing for several years after treatment.

When Alan Warren was diagnosed with rectal cancer four years ago, it was, understandably, very worrying. The taxi driver and father-of-two underwent chemotherapy, then radiotherapy, to shrink the tumour, before it was removed along with several inches of his bowel.

‘My oncologist said I would be back working within four months. Fours years on, I’m still unable to work,’ says Alan, 55.

During those years, Alan, from Christchurch, Dorset, has suffered unimaginable pain. He has also suffered the indignity of urine leaking out through his back passage after he developed an internal fistula 12cm long, running from the top of his bladder to what was left of his lower bowel.

An operation to close the fistula failed. After that, the only option was a permanent catheter.

‘My problems were all blamed on scar tissue from the original cancer surgery, so I was referred to a urologist for treatment.

‘By chance, Alan’s wife Jackie, a nurse, came across an article on radiotherapy damage. ‘My urologist reluctantly admitted that I probably did have it,’ says Alan.

In the UK treatment tends towards cutting out the afflicted area if necessary – which often results in more scar tissue and pain. But there are other options.

Jervoise Andreyev, a gastroenterologist at the Royal Marsden, London, uses anti-diarrhoea medication, pelvic exercises, antibiotics and dietary changes to treat the problem if it’s in the pelvis.

Meanwhile, Dr Delanian uses a combination of three drugs: vitamin E, pentoxifylline (for vascular and circulatory problems) and clodronate (bone disorders).

Her success rates are impressive, with research to back these up going back over a decade. After contacting the radiotherapy damage action group RAGE, Alan and Jackie found out about Dr Delanian, and in October last year they visited her in Paris. Thanks to treatment, by January 2008 Alan’s fistula was gone and he was healed.

Richard Wayman also saw Dr Delanian. Six months later, the hole in his face healed.

The leg weakness and tingling have stabilised, too.

But despite the fact that some UK doctors are quietly following her method, it is not a mainstream treatment, and many of her patients find that in the UK they are refused the drugs she prescribes.

In 2006, the Royal Marsden carried out a trial into Delanian’s treatment on breast cancer patients, but announced that it failed to show any significant improvement.

Paul Cornes says: ‘Newer radiation therapies such as intensity modulated radiation therapy (IMRT) and proton beam therapy deliver more accurate beams with significantly lesser side-effects.

‘Unfortunately, IMRT is not yet widely available in the UK, and proton beam therapy is considered too expensive for the NHS.’

Dr Delanian adds: ‘Radiation is a great tool, but can also be very dangerous. As a profession, we should try to find a way to minimise the risk and deal with the effects.’

 

Originally posted:  

“This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

December, 2016|Oral Cancer News|

Hog jowls and clementines: A bid to awaken cancer patients’ ruined sense of taste

Source: www.statnews.com
Author: Eric Boodman

The medicines were rich and strange, their active ingredients so particular they sounded fictional.

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Credit: Molly Ferguson for Stat

One regimen involved jowl bits from Red Wattle hogs; the pigs were bred from sows named Fart Blossom and Hildegard, and had spent the end of their lives gorging on acorns, hickory nuts, apples, and black walnuts. Another experimental drug included the flesh of the Ubatuba pepper, picked when it was red as a Santa suit, dried at precisely 90 degrees for five days, and then pulverized, seeds and all, into a fragrant, pinkish powder.

These concoctions were meant to be therapeutic — but they hadn’t been devised by pharmacologists or biochemists or even lab techs. Their inventors had no scientific training whatsoever: They were celebrity Montreal chef Frédéric Morin and renowned Atlanta pastry-maker Taria Camerino, who would be facing off in an unusual culinary duel. They’d been challenged to help solve a problem that most clinicians and neuroscientists aren’t able to — the impairment of taste in cancer patients who undergo chemotherapy and radiation.

This cook-off in the University of Kentucky’s demo kitchen was the opener for the second annual Neurogastronomy Symposium, which was born over a boozy, late-night chance encounter between neuropsychologist Dan Han and Morin in the chef’s restaurant. Together, they envisioned a conference that would combine neuroscience, agriculture, history, nutrition, medicine, and cooking — to understand the art and science of why we eat what we eat, and how we could change it for the better.

It isn’t your everyday scientific conference. It’s the kind of conference where invited neuroscientists and neurologists experience the flavor wheel of bourbon, sampling Woodford Reserve along with hazelnuts and then orange flesh to see how the liquor migrates into different parts of the palate. The kind of conference where a panel discussion on the science of taste includes a hip New York chef telling a roomful of dietitians that those with binge eating problems should “have sex! It will take your mind away from food.” The kind of conference where attendees suck lollipops designed to evoke the 1812 Overture.

You know, that kind of conference.

But behind the foodie fun is hard science and a real clinical conundrum. Killing cancer cells means killing healthy cells along with them. The poisons of chemo and the waves of radiation are especially good at taking apart the DNA of fast-dividing cells. That can help stop the out-of-control expansion of tumors. But the nerve cells in the nose and mouth replenish themselves quickly, and so they die, too.

The resulting changes in taste and smell might seem like a small price to pay for a lifesaving treatment. Yet one’s desire to get up in the morning can be intimately connected to one’s ability to enjoy food. Lose your ability to taste properly and your mental and physical health — which, for cancer patients, is already fragile — can suffer even more.

“Many people stop eating,” said Gary Beauchamp, a sensory perception researcher at the nonprofit Monell Chemical Senses Center in Philadelphia. “It is a potentially lethal effect.”

The loss of taste and smell is among the most common complaints of cancer patients. But those don’t necessarily bounce back even if you’re lucky enough to transition from patient to survivor.

“The hope is that some of those taste abilities will come back. We’re all different. Some regain it very quickly; others — like myself — might not at all,” said Barry Warner, a 59-year old who was treated for throat cancer seven years ago, and one of the cook-off’s taste-testers. “The bottom line is, if after a period of time, it doesn’t come back, it’s something you’ll have to adapt to. There isn’t going to be anything the same as it was.”

Most doctors hardly ask about this side effect, and when they do, they don’t have much to offer besides apologies and explanations. Their focus is keeping you alive.

“You have no resources to help you deal with the taste aspect,” Morin said in an interview with STAT about a week before he flew to the conference, as he drove to visit a friend with late-stage metastatic cancer. “Who is the next specialist you talk to? It’s the nutritionist: an accountant of nutrition, a bookkeeper of calories. They don’t become nutritionists because they relish the smell and taste of the skin of a roast chicken.”

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Camerino does a lot more than “relish” smells and tastes. By her own account, she lives through her sense of taste.

“I taste everything — like, everything,” she told STAT. “I taste colors, people, emotions, music … I can’t remember songs or movies, but I know what everything tastes like.”

That’s not just because she’s a celebrated pastry chef, who has devoted decades of her life to subtle differences in food. It’s also because she’s synesthetic. The unusual wiring of her brain makes her experience the world through her tongue. Sights and sounds conjure up complex flavors, allowing her to become a kind of mystical Willy Wonka, with top hat and plum velvet jacket swapped out in favor of big round glasses and snaking blue tattoos.

Camerino talks about the flavors she perceives the way some saints talk about God — as an experience accessible only through metaphor. And just as monks might interpret their visions through the lens of scripture, she uses her training in French patisserie, Japanese confectionery, and coastal Italian cooking to pinpoint what exactly it is she’s tasting at that moment — and, in some cases, to reproduce it.

When she was tasked with “profiling” the chef and television personality Andrew Zimmern in a cake, she was startled that the first thing to appear on her palate was prawn shell. “I was like, ‘Are you kidding?’” she said.

“How do I take a prawn shell and put it into a cake? You toast it. I toasted it low, for a long time, so it never burned and it didn’t become overly sharp, and then I ground it into a powder and I folded it into the cake batter, so all you got was the essence, nothing overwhelming.” The other flavors she had felt — green Szechuan peppercorns, bay leaves, miso, Asian pear — became accompanying syrups and jellies, until she was confident her cake perfectly embodied Zimmern’s spirit.

Sometimes, she’ll get flavors she’s never had before, and only through extensive research can she identify them. A band she was taste-profiling a few years ago conjured up a tang that turned out to be a Southeast Asian fruit called calamansi. A man she met around 2001 evoked a taste that turned out to be mare’s milk, as used in Tibetan and Mongolian cuisine. She is sure of it, even though she’s never tasted horse milk of any kind.

When Han, the neuropsychologist at the University of Kentucky, emailed to invite Camerino to the conference, she thought it was a joke. Like most people, she had never heard the term “neurogastronomy.” After all, it was only coined in 2011, in the title of a Yale neuroscientist’s book. She wasn’t sure that such a conference existed.

But after a back-and-forth by phone and email, she agreed. The arrangement had a fairy-tale ring to it: The woman for whom taste is everything would concoct a special dish that could rekindle patients’ pleasure in food.

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Barry Warner’s first hint of flavor began at least as early as 1957, in the months before he was born. His mother had grown up on a farm southeast of Louisville, where dinner came from the pigpen, the cowshed, and the vegetable patch. That kind of country cooking was what she learned and continued making into her adult years, and during her pregnancy, its fragrant particles filtered down though her digestive system and into her amniotic fluid, shaping what Warner would like once he was born.

He was raised among the rolling corn and tobacco farms of Nelson County, in a small town with a single stoplight. His parents weren’t farmers, but starting at 11 or 12, he helped neighbors to bale hay, loading it into trucks and stacking it in barns for the winter. He loved his mother’s cooking: cornbread sticks made in a cast-iron skillet, cooked cabbage, pork chops soft enough to cut with your fork.

But in 2009, eating became painful. “Every time I tried to extend my mouth wide enough to take a bite out of a sandwich or a hamburger, I had a burning sensation in my tongue,” he said. He went to see a friend, an oral surgeon who’d removed his wisdom teeth years before, and asked him to take a look.

“He thought it was cancer, but he didn’t tell me that and he didn’t tell my wife until he got confirmation,” Warner said. “I didn’t know about it until then.”

Throat cancer was one assault on his body and his ability to eat, but the treatment brought about many more. Five days a week, for seven weeks, he would be immobilized onto a steel table and inserted into a machine for radiation. He also got periodic rounds of chemo.

Those didn’t just dampen his ability to taste; they also left him without saliva and made him taste flavors that weren’t there.

“It really starts out when you’re undergoing chemotherapy, that metal taste you get,” said Warner. “It seems like no matter what you eat, the taste isn’t right.”

He could have been tasting the drugs in his bloodstream — but he could also have been experiencing what some call phantom flavors. Those phantoms, some scientists say, can be the product of a taste system that is no longer in control, like a trained horse gone crazy, bucking off its rider and reverting to a frenzy of kicks and twists.

“Taste has an interesting function beyond what you experience when you eat,” said Linda Bartoshuk, a taste perception expert at the University of Florida. “Nature wants you to eat, so the taste system can be used to turn off sensations that might interfere with your eating. Taste input actually turns down pain. How does taste do that? It does that by sending a lot if inhibitory messages in the brain.”

Take away those inhibitory messages, Bartoshuk said, and those unwanted sensations come roaring in.

Warner no longer tastes those stomach-turning flavors — but he can’t taste anything else either. He might be able to identify mashed potatoes, say, by the texture, and maybe a little by the smell. But beyond that, he wouldn’t be sure what he is eating.

Now, at the lunch before the cook-off, Warner took tiny bites of the squash-and-goat-cheese appetizer that was in front of him. Partially he was saving room for the two different regimens that were on their way to try to rekindle some of those lost gastronomic pleasures for him and a fellow survivor. But that is also just how he’s had to eat since treatment: slowly, mostly without talking, and with little enjoyment, forcing himself to take one small bite after another.

“I don’t really get hungry,” he said. “You might sit down at your meal thinking about how good it tastes. Instead, I’m counting how many bites it will take me to get through it. And you never think about how much eating is part of your social life. That changes dramatically.”

Warner has kept some of his habits anyway. He still drinks bourbon socially — a taste wired into him as a Kentuckian — and he can smell it, and feel the burn of the first sip. And he still drinks a cup of coffee every morning. But he can’t taste either one.

He doesn’t complain about these long-term side effects. “I am so grateful and indebted to the doctors that saved my life, I consider my hearing loss and my loss of taste just … collateral damage,” he said. “Seven years ago, when I was getting my diagnosis, the odds of me having this conversation were less than a flip of a coin.”

Still, part of him wishes that he could experience what he remembers of food and drink. He hopes he’ll wake up one day and be able to taste his coffee.

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Camerino has devoted herself to sweets, studying chocolate-making and practicing the way to twist a pastry bag so a spritz cookie has the perfect swirl. But suffering, loss, illness, pain — those, too, have distinct flavors for her.

She grew up in a poor, abusive household in Gainesville, Fla., with a heroin-addicted father. “Everything tasted like too-salty water, the kind that you gargle when you’re sick and you’re not supposed to drink,” she said.

She remembers a year when they ate little but white rice and packaged brown gravy. She remembers struggling through eating disorders without ever seeing a doctor. She remembers the smell of the Miller High Life her father drank. Yet she also remembers her mother getting a job at the African and Asian languages department at the University of Florida, being invited over and presented with foods she had never imagined. Those visits pushed her into studying linguistics.

It was only a chance encounter with a pastry magazine that made her switch course: “I was like, ‘That’s what I want to do. I want to create something that’s bite-sized that can change your perspective on life.’”

The invitation to the Neurogastronomy Symposium seemed like a perfect opportunity. And as with many of her concoctions, she would be guided by both her synesthesia and her culinary education. This time, though, the food would be a kind of medicine. “I’ve wanted to do something meaningful with this superpower,” she said.

She had been told next to nothing about the patients she would be cooking for. Instead, she both did external research — and turned inward. She began conjuring up the flavors evoked by cancer, by chemotherapy, by terrible pain. They were not so different from what she tasted during the long recovery from a motorcycle accident she had this summer: something acidic, a bit like blood, with an astringent metallic edge. She wasn’t surprised that this was the same taste that many cancer patients got when undergoing treatment.

“The first thing I wanted to do was dim that down. If I can gain control of the taste in their mouth, if I can get rid of it, I can give them some relief,” she said. “Blood or metal, the best way to compete with that would be citrus. I’m not using a really strong citrus: Clementines are sweet, they have a little more of a delicate flavor. The clementine will cut through — it will literally cut through — the blood and metallic taste, so now I have a pathway through into their experience.”

Yet she also knew that some patients didn’t have much sense of taste left at all, so she wanted flavors that, to her, produce vibrations felt beyond the mouth: basil and pistachio. “By using the basil, now I’m opening up from the top of the mouth to the top of the forehead, that’s where basil affects you, now I have their whole attention. And pistachio, it has a floral quality, it’s reminiscent of the Mediterranean, of the ocean.”

She wasn’t completely giving up on the mouth, though. She thought of how fat can fall soothingly on the palate, another sensation beyond taste. Butter was too heavy, too overpowering, she said. Instead she went with olive oil.

The medication she came up with would be delicate, fragrant, and not too sweet: a clementine upside-down cake with a dab of basil and pistachio pesto, crowned with a scoop of olive oil gelato.

She wasn’t sure how well it would work. She had never made it before, and had no plans to try it out before she arrived at the event. She knew nothing about these particular patients. Yet as she was preparing for the symposium, she became so excited about the idea of helping patients with taste loss that she even began to dream up a lozenge with the same goal.

“I’ve made people experience emotions by combining particular flavors,” she said. “If I’ve made them experience disappointment, satisfaction, joy, then it may be possible to activate certain parts of the brain and make them experience all of that even without their sense of taste.”

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The day of the challenge began snowy and gray. Two days before, fatty jowl bacon had been fetched from a long-bearded breeder of Red Wattle hogs, and driven 60 miles back to Lexington, for whatever taste-saving concoction Morin, the Montreal chef, had in mind. Now, the University of Kentucky chef-in-residence Bob Perry was picking up last-minute ingredients from the research farm where the Ubatuba peppers grow.

Morin, it turns out, hadn’t really planned his dish out in advance. He’d asked for some vegetables, wine, bacon, spices. He’d figure something out. Camerino, on the other hand, arrived at the university’s demo kitchen with her own ice cream maker and a duffel bag of tools — infrared thermometers, weird tweezers, Q-tips, an offset spatula, an elaborate assortment of spoons. She was going to bring her own olive oil, too, but thought that might be overkill.

Before they headed into the kitchen, the clinicians and scientists and chefs and sommeliers gathered around Warner and another cancer survivor named Erica Radhakrishnan like overeager medical students crowding around a rare and fascinating case. They peppered the two with questions. What was their most memorable meal? Are there textures you find comforting? Did you eat processed foods before? What about the savory taste, which the Japanese call umami?

Then, with whatever intel they could gather, the chefs began to cook. Morin peeled potatoes and fried bacon. Camerino cracked eggs with a single hit on the side of the bowl, a quick squeeze and a pull.

Camerino adjusted her recipe slightly, making room for local ingredients. She incorporated a sprinkle of Ubatuba paprika into a syrup for the cake; she used molasses boiled down from the green juice of sorghum grass instead of cane sugar.

She had been nervous when she arrived, but now she was in her element. She needs no timer to know exactly when something should come out of the oven, perfectly brown. She tasted a spoonful of the basil-pistachio pesto. “This is a trip to Sicily,” she said. “Your marriage is struggling, it’s winter, you’ve lost the ability to communicate … and you go to Sicily with your partner. That’s what this is.”

On the other side of the kitchen, Morin was breaking up the fractal patterns of Romanesco broccoli into tiny bits of chartreuse, as a topping for his potato soup. “If he does not taste anything, I also have a bottle of bourbon,” he muttered in Québécois French.

The kitchen began to fill with the smells of bacon and basil, a hint of curry, and the sweetness of cake. The dishes were ready. At the last second, Camerino spooned a glistening white ball of gelato onto the two desserts.

The chefs each came forward to introduce their dish. Then they pulled back toward the kitchen. And with everyone watching, Warner and Radhakrishnan took careful bites, rolling around first the soup and then the cake in their mouths. The chefs looked on, tense, as Warner primly wiped his moustache.

Both tasters complimented the moisture of the cake and the aromas of the soup, the way the spices enlivened the purée, the way the ice cream made it easier to swallow the cake. They would not reveal the winner until the next day, at the end of the conference, in an auditorium full of academics and clinicians.

But a few minutes later, when the room’s attention had moved elsewhere, Radhakrishnan, whose sense of taste has largely come back after two battles with breast cancer, turned to Warner.

“Barry, are you able to taste anything?” she asked, gesturing toward the cake.

There was a pause. Warner looked serious, like he was concentrating on a math problem. “No,” he said quietly.

It might have worked for Warner while he was undergoing chemo and tasting its metallic tang. Or it might have worked for someone else. Just as Warner’s pleasure in food had been shaped in complex ways — by his genes, by the country cooking he’d sampled in the womb and as a child, and then by those foods he’d grown to appreciate as an adult — his preferences were equally unique after he’d lost his sense of taste. After all, a loss is only a loss in relation to what came before.

To Camerino, the challenge was at once amazing and humbling. “I could have cried a lot — I cry really easily,” she said. The experiment only heightened her zeal: She is now working with a molecular sommelier to dream up four different lozenges for people with taste loss, and, for those without saliva, two aromatic sprays. She isn’t sure about the exact ingredients, but she is thinking citrus, basil, barley malt as a sweetener, and something reminiscent of anise.

Han hopes that these events for chefs and scientists can move from “fun preclinical challenges” to more rigorous research about what can actually help these patients and survivors. Morin is working on an app for cancer patients to share what helps for which kinds of taste loss, and there are other ideas in the works. “We’re doing very early studies to take stem cells to see if we could regrow the system,” said Beauchamp, the researcher from the Monell Center. “But we’re a long way from that.”

For now, Warner keeps to the regimen he’s turned to for seven years. He uses whomever he’s eating with as a timer for when he can stop making himself take bites. He smells coffee in the morning, sipping it as he heads into his sunroom to listen for birds. He feels that first burn of bourbon, and notices how it falls away with each subsequent sip.

December, 2016|Oral Cancer News|