Cancer patients sometimes can’t get coverage at the hospitals they want

Source: Washington Post

Author: Michelle Andrews

Published: January 15

Getting cancer is scary. Discovering that your health plan doesn’t give you access to leading cancer centers may make the diagnosis even more daunting.

As insurers participating in the health marketplace shrink their provider networks and slash the number of plans that offer out-of-network coverage, some consumers with cancer are learning that their treatment options can sometimes be limited.

One reader wrote to Kaiser Health News last month saying that she was dismayed to learn that none of the plans offered on the New York marketplace provides access to Memorial Sloan Kettering Cancer Center in New York, where she is a patient.

Memorial Sloan Kettering is a well-regarded cancer center that is affiliated with the National Comprehensive Cancer Network and the National Cancer Institute.It participates in New York’s Essential Plan, which is available to lower-income people but not to people enrolling in plans with the familiar categories of bronze, silver, gold and platinum.

NCCN is an alliance of 27 cancer centers whose physicians and researchers develop clinical practice guidelines that are widely respected. The National Cancer Institute’s 69 designated cancer centers, which are recognized for their scientific leadership and research, can offer patients access to cutting-edge treatments and clinical trials.

A 2015 survey found that three-quarters of NCI-designated cancer centers said they participated in at least some exchange plans, and 13 percent said they were included in all exchange plans in their state. Among centers that didn’t participate in any exchanges, many were in states with large numbers of exchange enrollees, including Texas and New York.

Does it matter whether someone with a cancer diagnosis gets treatment at one of these centers rather than at a community hospital or some other site? Research suggests that it may.

A large study published in 2015 found that patients newly diagnosed with several types of cancer — breast, colorectal, lung, pancreatic, gastric and bile duct — were 20 to 50 percent more likely to die of it if they were initially treated somewhere other than at a NCI-designated comprehensive cancer center.

Researchers hypothesize that the cancer centers’ multidisciplinary approach to decision-making, supportive care and access to the latest treatment, among other things, contribute to the superior outcomes, said Julie Wolfson, a pediatric oncologist at the Institute for Cancer Outcomes and Survivorship at the University of Alabama at Birmingham, who co-authored the study.

Often, factors besides a hospital’s survival rates contribute to decisions about where to go for care, said Robert Carlson, NCCN’s chief executive. Those include a patient’s social and support systems and concerns about nonmedical costs such as housing and transportation.

“Most patients, if offered the option to go to a major cancer center, especially if it involves traveling, will decline it,” Carlson said.

Some cancer centers aim to give patients access to a variety of facilities. For example, City of Hope cancer center’s main academic campus is in Duarte, Calif., in Los Angeles County. That’s the best site for patients when their cancers are rare or advanced, when optimal treatment isn’t clear or when they could participate in a clinical trial, said Harlan Levine, the chief executive of the City of Hope Medical Foundation. But the cancer center also owns 14 community cancer clinics around southern California for patients who can be effectively treated in that setting.

City of Hope participates in two plans on California’s exchange, Blue Shield and Anthem, and its physicians are in network for the exchange’s Oscar health plan. But most people don’t check about cancer care when they shop for a plan.

“Cancer is an ‘infrequent purchase’ from a marketing point of view,” Levine said. In many cases, patients don’t realize their lack of access until after their diagnosis, when it may be too late.

Cancer centers may try to aid patients regardless of gaps in coverage. “We understand that each patient has a unique financial situation and we work with our patients, especially those in active treatment, to ensure they receive the care needed and that their treatment is uninterrupted,” said Ruth Landé, senior vice president for patient revenues at Memorial Sloan Kettering.

Patients who believe that it’s critical to be treated at a cancer center that’s not in their insurance network have some recourse.

When people receive a cancer diagnosis, it’s “overwhelming,” said Anna Howard, a principal for policy development at the American Cancer Society’s Cancer Action Network. “You may not be aware of the fact that if your insurance plan says you don’t have coverage at a cancer center, you can file an appeal.”

 

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

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January, 2017|Oral Cancer News|

FDA Warns Against So-Called “Cancer Cure”

Source: http://www.curetoday.com/articles/fda-warns-against-socalled-cancer-cure

Published: 01/13/2017

Author: BRIELLE URCIUOLI

The US Food and Drug Administration (FDA) just added another agent, PNC-27, to the growing list of drugs that falsely claim to treat or cure cancer.

An FDA lab recently found the bacteria Variovorax paradoxus in PNC-27, a product that is claiming to treat and cure all cancers, claiming to affect lung cancer as affectively as head and neck cancer. Though no illness or serious adverse events were reported to the FDA, contact with contaminated samples can lead to life-threatening infections, especially in vulnerable populations, such as young children, elderly people, pregnant women and people who have weakened immune systems, according to a statement released by the FDA.

“In general, consumers should be cautious of products marketed and sold online claiming to treat, cure or prevent any disease. Products claiming to treat, cure or prevent disease, but are not proven safe and effective for those purposes not only defraud consumers of money, they can lead to delays in getting proper diagnosis and treatment of a potentially serious condition,” Kristofer Baumgartner, FDA spokesperson, said in an interview with CURE.

PNC-27 is being dosed in multiple ways, such as a nebulized solution, intravenous solution, vaginal suppository or rectal suppository.

The FDA is urging people not to purchase or use PNC-27, which is neither FDA evaluated or approved. Patients should consult with their licensed health care providers before deciding on a treatment plan, and if they have already taken PNC-27, they should see their doctor as soon as possible, and report any adverse events to the FDA’s MedWatch Adverse Event Reporting Program.

As a matter of policy, the FDA cannot discuss any ongoing trials in detail, Baumgartner said. – See more at: http://www.curetoday.com/articles/fda-warns-against-socalled-cancer-cure#sthash.YgMC7JgV.dpuf

 

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

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January, 2017|Oral Cancer News|

NCI-Designated Cancer Centers Issue Statement in Support of New CDC Recommendations on HPV Vaccination

Source: The ASCO Post
Posted: 1/11/2017

The 69 National Cancer Institute (NCI)-designated cancer centers have issued a joint statement in support of recently revised recommendations from the Centers for Disease Control and Prevention (CDC) to improve national vaccination rates for human papillomavirus (HPV).

According to the CDC, incidence rates of HPV-associated cancers have continued to rise, with approximately 39,000 new HPV-associated cancers now diagnosed each year in the United States. Although HPV vaccines can prevent the majority of cervical, anal, oropharyngeal, and other genital cancers, vaccination rates remain low across the United States, with just 41.9% of girls and 28.1% of boys completing the recommended vaccine series.

New Recommendations

The new guidelines from the CDC recommend that children under age 15 should receive 2 doses of the 9-valent HPV vaccine at least 6 months apart. Adolescents and young adults older than 14 should continue to complete the 3-dose series.

Research shows there are a number of barriers to overcome to improve vaccination rates, including a lack of strong recommendations from physicians and parents not understanding that this vaccine protects against several types of cancer. In an effort to overcome these barriers, NCI-designated cancer centers have organized a continuing series of national summits to share new research, discuss best practices, and identify collective action toward improving vaccination rates.

The original joint statement, published in January 2016, was the major recommendation from a summit hosted at The University of Texas MD Anderson Cancer in November 2015, which brought together experts from the NCI, CDC, American Cancer Society, and more than half of the NCI-designated cancer centers.

The updated statement is the result of discussions from the most recent summit, hosted this past summer by The Ohio State University Comprehensive Cancer Center. Nearly 150 experts from across the country gathered in Columbus to present research updates and plan future collaborative actions across NCI-designated cancer centers.

 

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

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January, 2017|Oral Cancer News|

Artificial larynx implant helps throat cancer patient breathe and speak

Source: www.ctvnews.ca
Author: staff

Sixteen months after receiving an artificial larynx, a 56-year-old French man suffering from throat cancer can now whisper and breathe normally. A report published this week in the New England Journal of Medicine considers this to be a significant first achievement.

Thanks to the implant, a 56-year-old throat cancer patient can now whisper and breathe normally. © ChrisChrisW / Istock.com

Thanks to the implant, a 56-year-old throat cancer patient can now whisper and breathe normally. © ChrisChrisW / Istock.com

This is the first time that doctors have observed a patient with the implant long term recover functions such as breathing and speaking after the complete removal of the larynx. Thanks to an artificial voice box, implanted in 2015 at France’s Strasbourg-Hautepierre university hospital, the 56-year-old Frenchman, who lives in Alsace, can now whisper in a comprehensible manner and breathe normally.

The patient has also recovered his sense of smell, which was damaged by the removal of the larynx. Other than the vocal cords, the larynx features an upper valve, called the epiglottis, which closes when food passes down the throat to prevent it from entering the windpipe.

The prosthetic larynx was developed by a French company called Protip Médical. It consists of a rigid titanium and silicone structure replacing the larynx and a removable titanium part that mimics the function of the epiglottis.

The only problem that remains unresolved in the implant is the function of the epiglottis. As a result, the patient coughs from time to time when eating, as food accidentally enters the windpipe. However, the surgeons still consider the functioning implant a highly satisfactory achievement.

The current procedure used to return voice function to throat cancer patients involves puncturing the throat to insert a valve allowing air to pass from the windpipe to the esophagus.

A few doubts remain about the long-term effectiveness of the implant. For example, blockages caused by dried out mucus and secretions from the lungs and nose could be a risk. Another concern is the risk of rejection, particularly in cancer patients who have undergone radiotherapy or chemotherapy treatments.

As for patient comfort, further testing will establish how the mobility of the patient’s neck is affected by the presence of a rigid tube in the throat.

“This implant is constantly evolving and the next patients will benefit from substantial improvements,” notably to improve the passage of food down the throat, said lead researcher Nihal Engin Vrana.

Each year more than 12,000 new cases of throat cancer are diagnosed in the U.S.. Larynx transplants remain extremely rare worldwide and are generally used in cases unrelated to cancer, which represent a small majority.

Source: The report is published in the New England Journal of Medicine.

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January, 2017|Oral Cancer News|

Feds, cancer centers aim to boost HPV vaccinations

Source: www.dispatch.com
Author: JoAnne Viviano

Faced with getting her daughter the HPV vaccine, which helps protect against cervical and other cancers, Anaraquel Sanguinetti paused.

The human papillomavirus is spread through sexual contact, and the Westerville mom didn’t want her now-18-year-old daughter to think she was promoting promiscuity. So Sanguinetti did some research. And she had a long talk with her daughter, and another with her doctor.

In the end, daughter Celine got the vaccine last year.

“We are discovering every day new reasons why people obtain cancer, so it’s just another added layer of protection for my daughter for her future, because you just never know,” Sanguetti said. “ I didn’t want to have a regret.”

Sanguetti is in the minority. Though vaccinating against HPV is recommended by the Centers for Disease Control and Prevention, and countless cancer centers and health-care providers, most children in the United States have not been vaccinated against HPV.

Calling that “a serious public health threat,” dozens of cancer centers released a joint statement on Wednesday urging more parents and pediatricians to get onboard.

The statement endorses the CDC’s recent revisions to its HPV vaccine recommendations. Vaccinating, the statement says, could help prevent the nearly 40,000 cases of HPV-associated cancers diagnosed in the United States each year.

“Get the HPV vaccine for your child so they don’t have to hear those words: ‘You have cancer,’ “ said Electra Paskett, co-leader of cancer control at Ohio State University’s Comprehensive Cancer Center, which is among the institutions participating in the effort.

The CDC estimates that as many as 79 million Americans are infected with HPV, which can cause cervical, genital, anal, rectal and throat cancers as well as genital warts. Fourteen million new infections occur each year.

A 2016 CDC report says that only about 42 percent of girls and 28 percent of boys had completed the recommended vaccination series. In Ohio, 35 percent of girls and 23 percent of boys have completed the vaccination course.

In all, 69 National Cancer Institute-designated cancer centers are participating in the effort.

The recommendations issued last year say that kids who are 11 or 12 should receive two shots of the HPV vaccine, delivered at least six months apart. The previous recommendation was for three shots, which is still advised for people 15 to 26 years old.

Simplifying the process likely will increase participation and move the nation toward the U.S. Department of Health and Human Service’s goal of having 80 percent of young people vaccinated by 2020, said Dr. Li Li, associate director for prevention research at Case Western Reserve’s Comprehensive Cancer Center.

“This is one of the few preventable cancers,” he said. “There’s a very unique opportunity for us nationwide to get together to put this forward.”

Li said he’d like to see the state mandate that children receive the vaccine at age 11 or 12 to enroll in school. That’s the rule in three states, he said.

Paskett said recommendations also call for bundling the HPV vaccine with other vaccines given at that age.

“The public has been clamoring for a cancer vaccine for decades, and we now have one and we need to use it,” she said.

Sanguetti said she wanted to make sure her daughter was vaccinated before going off to college. She said she would recommend that other parents do their own research and have their children vaccinated even if it is uncomfortable thinking about their sons or daughters having sex.

“It’s for their future,” she said. “It’s more toward their well-being. It’s not promoting anything other than a preventative for cancer.”

For more information, go to www.cdc.gov/hpv.

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January, 2017|Oral Cancer News|

Head and neck cancer art exhibition unveils hidden experience

Source: edmontonjournal.com
Author: Madeleine Cummings

Few words are as terrifying as these three: “You have cancer.”

“When you’re told you have cancer, everything seems to fall apart,” said Ken Roth, who was diagnosed with squamous cell carcinoma on the base of his tongue four years ago.

art_cancer

“Your head’s spinning, you don’t know what’s going on, you don’t know what the results are going to be,” he said.

Brad Necyk, an artist and PhD student in psychiatry at the University of Alberta, tried to capture some of that disorientation in an installation that features a fragmented video of Roth’s face.

His art is part of a new multimedia exhibition called “FLUX: Responding to Head and Neck Cancer,” which explores how head and neck cancer affects patients’ lives. (Ingrid Bachmann, Sean Caulfield, Jude Griebel, Jill Ho-You and Heather Huston also have works in the exhibit.)

Roth had three-quarters of the base of his tongue removed and his illness led him to leave his job, but others have it a lot worse, he said.

Patients with head and neck cancer often undergo lengthy (sometimes multiple) surgeries and they can have trouble speaking, swallowing and hearing. Some patients have to relearn how to speak, and then do it again after an additional surgery.

These symptoms — many of which are visible — change how patients eat, communicate and behave in public. They can be devastating, and according to the Canadian Cancer Society, depression is common among the thousands of Canadians who have these kinds of cancer.

Minn Yoon, a U of A professor who has been interviewing head and neck cancer patients for her research on oral health and the illness experience, said she felt compelled to share their stories beyond academia.

Typically, researchers publish their findings in academic journals or present them to other experts at conferences, but Yoon said she didn’t think that alone would do them justice. “I wanted to find a way of sharing their stories without losing the person behind them,” she said.

She and Pamela Brett-MacLean, a professor who directs the Arts and Humanities in Health and Medicine Program at the university, led an interdisciplinary project that brought together artists, patients and researchers.

Patients collaborated with artists during multiple workshops and feedback sessions. According to Roth, these sessions could be very emotional and stressful, but also enlightening for patients, who learned about the progression of others’ cancer treatments and exchanged advice.

Lianne McTavish, a professor who curated the exhibit and attended the workshops, said she was struck by many of the stories she heard about surgeries.

“If you have a surgery that changes your appearance significantly, your entire identity is changed and the way you function in public spaces forever is changed,” she said.

One sculpture, “Obstruction,” by Griebel, combines the catastrophe of facing a cancer diagnosis with the deadly 1903 rock slide that occurred in Frank, Alta. There is hope in the piece, however, McTavish noted. The sculpted figure appears to be sitting on a hospital bed and his body is crumbling, but he sits upright and is made of stone. Tiny trees sprout up and down his arms, suggesting recovery and care.

Necyk, the artist whose video installation portrays patients’ faces in a more intimate way, said he was nervous to show the first versions of his art to the patients with whom he worked.

“It was brutal-looking work, almost violent,” he said. “But the patients felt that this is something that’s not represented in a lot of the narrative representations we have of cancer.”

Rather than portray Roth as a hero or a victim, the art reveals how cancer can change a person, for better and for worse.

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January, 2017|Oral Cancer News|

Immunotherapies Form New Frontier in Treating Head and Neck Cancers

Source: OncLive.com

Date: January 2nd, 2017

In August 2016, the FDA approved pembrolizumab (Keytruda) for patients with platinum-refractory squamous cell carcinoma of the head and neck (SCCHN).1 Not only was it the first immunotherapy approved for head and neck cancer (HNC), but it marked the first new drug approval for HNC in the United States in 20 years.

“Now we have an agent that really changes the paradigm—a new class of treatment—and we are seeing amazing benefit in some patients,” said Tanguy Seiwert, MD, during an OncLive Peer Exchange® panel held during the 2016 European Society for Medical Oncology (ESMO) Annual Meeting.

Less than a month later, the menu of immunotherapy options expanded as the FDA approved nivolumab (Opdivo) for the treatment of patients with recurrent or metastatic SCCHN with disease progression on or after a platinum-based therapy.

During the Peer Exchange, the panelists provided an overview of the immunotherapy terrain in HNC, a discussion that was filled with considerable hope and excitement. “When we try immunotherapies in the second-line setting, we see objective responses—sometimes deep, clinically meaningful, extremely durable responses—and we’re beginning to think that maybe, on some occasions, we may be able to cure patients with relapsed metastatic head and neck cancer,” said Kevin Harrington, MD, PhD. This is especially remarkable since such patients have generally had a survival of ≤1 year.

The panelists concurred that the care of patients with HNC will evolve significantly over the next 5 to 10 years, as the tip of the immunotherapy iceberg is just starting to be scratched. During the Peer Exchange, they provided a rationale for using immunotherapies in HNC, including human papillomavirus (HPV)-positive and HPV-negative disease; outlined key immunotherapy studies; and offered their thoughts on the future of immunotherapies in HNC, including use of biomarkers to guide therapy and the opportunity to improve response by using combination treatments.

“Next-generation sequencing efforts are beginning to shed light on the hidden complexities of these tumors, leading to the identification of multiple molecular subtypes,” said Ezra Cohen, MD, who served as moderator for the session. “As key differences between tumors, with and without HPV infection, are beginning to emerge, the challenge is to find ways to use this information to personalize treatment for individual patients.”

Rationale for Immunotherapy in HNC

In patients with locally advanced HNC, HPV status has generally determined outcomes, with HPV-positive patients having a good prognosis and higher likelihood of cure, and HPV-negative patients having a poorer prognosis and a lower likelihood of cure.

However, outcomes with conventional therapy in recurrent metastatic disease have been poor across the board, especially in the setting of platinum- refractory disease, indicating a tremendous unmet need. Before pembrolizumab was approved in this setting, the recommendation was to use a taxane, such as methotrexate or cetuximab (Erbitux), as a single agent, but the outcomes have been unsatisfactory. In contrast, immunotherapy studies have shown promising results in these patients, with HPV-negative patients also benefiting.

“The rationale for [using immunotherapies] for HPV-positive tumors may be the virus, as well as mutations, and for HPV-negative tumors, it’s likely the mutation load,” said Seiwert. He explained that HPV-negative tumors are often smoking-associated tumors and, therefore, have high mutation loads, a factor that has been associated with good response to immunotherapy, whereas HPV-positive tumors resemble melanoma, with significant inflammation, another factor associated with good response.

Although efficacy was found to be the same for HPV-positive and HPV-negative tumors in KEYNOTE-012, which was the study that led to pembrolizumab’s approval for HNC, some CheckMate-141 subanalyses suggest there might be slightly more activity in HPV-positive patients, noted Seiwert.

Despite such findings, he said, “HPV status should not actually dissuade us one way or the other from using immunotherapy—it’s clearly active in both HPV-negative and HPV-positive tumors.” And, as Harrington pointed out earlier in the discussion, since nothing else works well in the second-line setting, “why not try it?”

Key Pembrolizumab Studies

The panelists proceeded to provide an overview of several instrumental pembrolizumab studies, including the KEYNOTE-012 expansion study and KEYNOTE-055 studies, and of the phase III CheckMate-141 study, which paved the way for nivolumab’s approval.2-4 They also discussed a subanalysis of CheckMate-141 presented at ESMO that demonstrated good patient-reported outcomes following nivolumab therapy, lending further support to its use in SCCHN.5

KEYNOTE-012 Expansion Study

The phase Ib KEYNOTE-012 expansion study administered 200 mg of pembrolizumab intravenously once every 3 weeks to 132 patients with recurrent or metastatic SCCHN, irrespective of their programmed death-ligand 1 (PD-L1) or HPV status.2 Primary endpoints included overall response rate (ORR), and safety and secondary endpoints included progression-free survival (PFS), overall survival (OS), and PD-L1 expression’s impact on response.

Pembrolizumab was well tolerated, and yielded a clinically meaningful ORR with evidence of durable responses; median duration of response was not reached. The ORR was 18% by central imaging vendor review and 20% by investigator analysis. A statistically significant increase in ORR was observed for PD-L1–positive versus PD- L1–negative patients (22% vs 4%, respectively; P = .021).

At 6 months, PFS and OS rates were 23% and 59%, respectively. “And we have patients living far beyond what we usually expect for metastatic disease…we now have patients who have completed 2 years of treatment in a setting with a median life expectancy of about 6 months,” revealed Seiwert, who is involved with the study.

Pembrolizumab was also well tolerated. Grade ≥3 events occurred in 9% of patients. “[This is] within the range of toxicities that we have seen in other studies,” said Viktor Grünwald, MD. “Because we’re approaching a very sick and morbid patient population, we might expect different toxicity outcomes, so I think it’s very reassuring that we’re seeing the same amount of toxicity as in other studies,” he explained.

While checkpoint inhibitors are generally well tolerated and have favorable toxicity profiles, the panelists warned that severe side effects can occur and careful patient monitoring is required. A key concern they discussed is pneumonitis.

“Although it only occurs in about 1% to 2% of patients, you must screen for it because it’s life threatening,” said Seiwert. “If somebody says, ‘I am short of breath’ or ‘I have a little bit of a cough,’ I scan them right away to look for it,” he said, explaining that immediate treatment with high-dose steroids is warranted.

KEYNOTE-055 Preliminary Results

KEYNOTE-055 enrolled 172 patients with recurrent or metastatic SCCHN to receive pembrolizumab 200 mg every 3 weeks after progression on platinum plus cetuximab. The preliminary analysis, which reported on 92 evaluable patients, was initially presented at the 2016 American Society of Clinical Oncology (ASCO) Annual Meeting.3 Primary endpoints include ORR and safety.

As with KEYNOTE-012, pembrolizumab was found to be well tolerated and to have significant antitumor activity, with 17% to 18% response rates. Evaluation of the full study cohort will include analyses of HPV status and response by anatomic site. “I think that’s the story we’re seeing for pembrolizumab in head and neck cancer—patients are already being treated in single-arm clinical studies, which is somewhat unusual, but reflects the speed of knowledge that we’re gaining that is leading to approvals,” said Grünwald.

Nivolumab also had a lower incidence of treatment-related adverse events (TRAEs) than IC. Any grade TRAEs occurred in 59.3% and 77.5% of patients on nivolumab or IC, respectively. Grade 3/4 TRAEs occurred in 13.6% and 35.1% of patients, respectively, indicating the treatment is well tolerated, which also translated to improvements in quality of life in the patient-reported outcomes study.5

“A very detailed analysis of patient-reported outcomes using 3 well-validated questionnaires showed nivolumab was able to maintain good patient-re- ported outcomes in terms of their quality of life, their functioning, and their symptom scores, whereas IC showed serious detriment in those scores,” said Harrington.

In the study,5 patients treated with nivolumab had delayed worsening of functioning and symptoms compared with IC at approximately 4 months of follow-up, with patients receiving nivolumab reporting longer maintenance of function and less pain, fatigue, and dyspnea on treatment, as compared with those receiving IC.

“So not only do we have clear evidence that these drugs can work in terms of improving survival and delivering meaningful responses, but they do so with fewer episodes of treatment-related toxicity and disease-associated morbidity,” said Harrington.

Future of Immunotherapy in HNC

The panelists noted that use of biomarkers and combination therapies are key areas of future development for HNC. Both areas are already being examined in clinical trials and have relevance across the vast HNC spectrum, from those with minimal disease to those with previously treated advanced disease, potentially offering a curative pathway to more patients.

“It’s fantastic to have drugs that work in second-line relapsed metastatic or first-line metastatic setting, but what I want and what patients want is to be cured at the time they first present with their disease so they never have treatment in relapsed metastatic setting,” said Harrington.

Biomarkers

Although biomarkers such as PD-L1 expression are already being used and can help identify patients who are more likely to respond, high PD-L1 expression does not guarantee response, nor does no or low PD-L1 expression ensure lack of response or lack of durable response.

Subsequently, use of pembrolizumab and nivolumab is without use of this biomarker for patient selection. “While [a PD-L1 assay] can help inform patients of their likelihood to respond, it is not an assay that can select patients,” said Seiwert, who is working to identify novel biomarkers.

“I’ve been involved in looking at a novel biomarker called interferon gamma signature, which can be assayed quite easily with a rapid turn-around, and seems to perform somewhat better than PD-L1 expression,” said Seiwert. “It seems to have a high negative predictive value, and it may eventually allow us to exclude some patients who have no chance of having benefit, but it needs further validation.” He said that other biomarkers are also under investigation, including mutational load, immunogenic mutations, and dynamic biomarkers, but all are still experimental.

“What we really need is a biomarker that would predict progressive disease,” said Grünwald. “To me, that would be much more usable than an assay that just allows us to say to patients ‘your chance of response is 30%.’ I see biomarkers as having the potential to guide development of treatment algorithms,” he said.

Combinations

Currently, PD-L1–targeted agents have seen the greatest development, and studies are starting to suggest that response with these agents can be enhanced when they are combined with other treatments, including chemotherapy, CTLA-4 blockade, and radiotherapy. “About 70% of HNCs have some level of PD-L1 expression—some level of inflammation—but we only see responses in 15% to 18% of patients, so the pool of patients who might benefit from combinations is huge,” said Seiwert.

He noted that the melanoma and lung cancer settings have already shown combining PD-1 inhibitors with chemotherapy or a second checkpoint inhibitor to be particularly promising in the front line, and he suspects one or both combinations will eventually receive approval in these settings and warrant serious investigation for patients with SCCHN.

“Some of our patients do not benefit from a checkpoint inhibitor, and we can’t identify these patients in advance, but giving them chemotherapy might buy us time,” he said. “It’s almost like a pharmacodynamic effect, where we have more time for the immunotherapy to work, and maybe, also make the immune system stronger and expose antigens.”

In the locally advanced setting, animal studies have shown promise combining chemoradiotherapy with immunotherapy, but results of a small study presented at ESMO revealed some dosing challenges in humans.6

In the study, 18 patients with various forms of intermediate- or high-risk SCCHN received ipilimumab, an anti–CTLA-4 antibody, in addition to standard intensity-modulated radiotherapy with cetuximab. Dermatologic immune-related adverse events limited dosing. “There are some safety hints that it may not be a piece of cake getting through radiotherapy, and maybe cetuximab might not be the optimal part now, but I think there is still a lot of promise combining radiochemotherapy with immunotherapy,” said Grünwald. “It could be a future way in how we successfully treat early forms of localized SCCHN.”

Combining checkpoint inhibition with radiation is another intriguing combination, and one that has the potential to act like an in situ vaccination that can lead to abscopal responses (ie, responses at distant sites), noted Harrington, something he has, thus far, only observed rarely with radiation.

“The idea behind combining checkpoint inhibition and radiation is that we could use the confluence of the two different mechanisms to make abscopal responses more predictable and more effective at a distant site, while engendering an immunologically relevant response that allows us to treat macroscopic metastatic disease while also getting rid of micrometastatic disease that could lead to metastatic failure,” he said.

Although immunotherapy combinations are showing promise in SCCHN and other cancers, the panelists warned that they should only be attempted as part of clinical trials. “There are still a lot of question marks about combinations, so they must be done as part of a clinical trial,” said Seiwert. Not only are toxicities and immunosuppressive effects best managed in clinical trials, but trials are essential in advancing these therapies and identifying the next breakthroughs in the field, he said.

 

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

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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.”

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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.

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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.

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December, 2016|Oral Cancer News|