New therapeutic opportunities on the horizon for cancer victimsBy Jonas T. Johnson, MDChair, Department of Otolaryngology, Eye and Ear Institute

Surgery and radiation therapy have been the mainstay of treatment options for patients withsquamous cell carcinoma of the mouth and throat. In the past two decades, researchers havedemonstrated that the addition of some forms of chemotherapy make irradiation more effective. ese observations have resulted in a variety of treatment options which sometimes allow patients to avoid major surgery. For instance, we know now that patients with advanced, but limited, cancer of the larynx can avoid having their voice box removed under some circum stances if they are treated with a combina tion of chemotherapy and irradiation. Unfortunately, this treatment istoxic and often results in some significant side effects such as loss of saliva, disruption of taste, and difficulty swallowing.

Investigators at the University of Pittsburgh and other major cancer centers across the country have identified new agents which affect tumor growth, but do not have the toxic side effects ofconventional chemotherapy. e first of these to be licensed is a drug called Erbitux (cetuximab).is drug was first licensed about seven years ago. Since that time, a multitude of agents, most of which are monoclonal antibodies or tyrosine kinase inhibitors, have been introduced to themedical world as having potential therapeutic value in the treatment of squamous carcinoma.

Concurrent with the understanding of the biology of these agents has been the development of the ability to do testing of the cancer genome. At this point, we are hoping that a more in depthunder standing of the interaction between these growth inhibitors and the actual genome will allow for the doctor to actually target a specific cancer to stop it in its tracks without subjecting the patient to many of the conventional side effects associated with chemotherapy.

At the University of Pittsburgh, we have been undertaking a series of biomarker studies in whichpatients scheduled for surgery to remove a mouth cancer are administered an oral tablet for 2-4weeks before surgery. We are delighted to report that on two separate occasions the tumor wascompletely eliminated by the tablet. is gives us great room for optimism, however, we mustacknowledge that the ability to completely block the tumor growth in an individual patient is not yet predictable.

We need to invest in continued new science to bring these technologies to the point where they can be reliably counted upon to cure cancer with fewer side effects.

Page 1New therapeutic opportunities onthe horizon for cancer victims

Page 2Katmandu! Wow!

Principles of head and neck cancerreconstruction

Page 3Cancer – whatta, whatta,whatta…BLESSING!

Page 4What is dysphagia?

What is stereotactic radiosurgery?

Page 5The sacred work of caregiving

Page 6Swallowing Disorders Center

Clinical trials

Contact information

Head and Neck Cancer Program website

H EADWAYNEWS ON ADVANCES IN THE PREVENTION, DETECTION, AND TREATMENT OF HEAD AND NECK CANCERS

Winter 2014

Katmandu! Wow!By Howard B. McDaniel

Diagnosed with Adenoid Cystic Carcinoma on the base of his tongue in January,2009, Howard subsequentlyunderwent hemi glossectomywith free-flap reconstructionfollowed by chemo-enhanced radiation.

I began to understand how smart phoneshad changed the world when I received anemail from a friend trekking in Nepal. He was a German whom I had met on anon-line forum for Adenoid Cystic Carci -noma, the rare cancer I was diagnosed within 2009. My recent scan showed lungmets and I had sent him an email askinghow he had treated his mets. When Ireceived his reply and saw that it was fromKatmandu, I began to better understandhow interconnected the world hadbecome – and how much these changeswere helping people like me. Here I wassitting in my living room in rural north -west Pennsylvania trying to sort out mytreatment options when I receive a notefrom someone trekking in Nepal. Wow! Itreally made me pause. How fortuitous tolive in an age when com muni cation is soglobal and yet so personal. Living with arare cancer that most doctors never see hasput me on a road of confusing questionsand elusive answers. I need all the help I canget and the internet’s capacity to connectme to others who have similar issues hasbeen an invaluable asset in understandingmy treatment options.

It seems like so long ago, but in thebeginning I discovered an on-line site forAdenoid Cystic Carcinoma almost byaccident. I was searching to find outeverything I could about ACC when I ranacross the ACCOI (Adenoid CysticCarcinoma Organization International)forum site. Here was a site that broughttogether people with ACC from all overthe planet; people who were living withthe effects of unfathomable head and necksurgeries, radiation, and the fear of whatthe next scan might show. Here were peoplewho had insight from their own experiencesand knowledge from their own treat ments.Here were people connected to surgeonsand radiologists across the globe, willingto share information about what treat -ments they were trying, what treat mentscaused more harm than good, and what

Knowledge, insight, hope, and friendshipat your fingertips...how good to live in the 21st century. Katmandu today.Timbuktu tomorrow.

Principles of head andneck cancer reconstructionBy Mario G. Solari, MDAssistant Professor of Plastic SurgeryDirector, Vascularized Composite Allotransplantation Laboratory

Comprehensive care of head and neckcancer patients requires a multidisci -plinary team. Among the long list ofcaregivers who aim to deliver the bestpossible survival and quality of life out -comes is the reconstructive surgeon. isarticle will review who can benefit fromreconstruc tive surgery and will describethe funda mental techniques used inmodern care.

Most cancer therapies, such as surgery,chemotherapy, and radiation therapy, willhave some side-effect that may com promisethe cosmetic appearance of the neck, face,or scalp or compromise the function ofthe complex structures involved in speechand swallowing. is may occur at thetime of cancer surgery or months or yearslater in patients who are cancer-free.Deformities of the head and neck can havea significant effect on self-esteem, abilityto socialize, and overall quality of life.

e first step in evaluating a patient whomay benefit from reconstructive orrestorative surgery is defining the problemand establishing the goals. e major goalsof reconstructive surgery involve restoringor improving physical appearance andfunction of the aerodigestive tract (nose,lips, mouth, jaw, and throat), protectingvital structures like blood vessels andnerves, and enabling critical therapies suchas chemo and radiation therapy. ereconstructive surgeon, who may be theENT surgeon removing the tumor or aplastic surgeon, will design a plan that willmeet realistic goals established with thepatient with the least invasive surgerypossible. ere are many patient-specificfactors that go into this decision such asmedical problems, smoking status, past orfuture chemo/radiation therapy, andoverall functional status. Two differentpatients with the same cancer resectiondefect could end up with very differentreconstructive plans.

treatmentsworked, allessentialinformationwhen dealingwith an orphandisease. What acritical resource toaugment what mydoctors were

telling me. What a vital source ofsometimes actionable informa tion that I could pass along to my doctors.

en, there was the aloneness of it all, theoverwhelming feeling that my wife and Iwere, in a sense, facing this dreadfuldisease alone. Yet how quickly we felt thefriendship of an on-line community andknew that we were not alone. ere wereothers out there with the same unpre -dictable and relentless disease, others whounder stood what we were going through,and were there to help us with knowledgefrom their experiences. We were suddenly,unexpectedly, members of a community,and for that we will be forever thankful.

It didn’t stop there. On another front I washaving issues with my g-tube when againby accident I discovered Oley, an onlineforum for people with feeding tubes. I wasastonished. Here was a place, a com -munity, where I could go to ask questionsand receive answers from tubers across theglobe. Here was a place where I could goto see how others managed issues such asgranulated tissue, leaking tubes, excessiveintestinal gas, or the merits of cannednutrition versus blended diets. I finallyhad a place I could go to compare notes onhow tubers deal with eating out, hiking,and of course, traveling and getting themiscellaneous liquids and curious eatingparaphernalia through airport security. I could ask the big questions or I couldpost a thought, looking for feedback andinsight, and get a variety of answers.Sometimes the answers would be con crete,but at other times, the answers wouldbegin a dialogue that would lead to abetter understanding. Moreover, theforum led me to tuber Facebook groupsproviding me with other pathways toinformation, camaraderie, or just venting,and to know that at a moment’s noticethere were others ready to help me when -ever I needed it. It made me wonder whatpeople used to do. It made me see howthings were improving. It gave me hope.

2H E A DWAY

A basic tool used by the reconstructivesurgeon is the “reconstructive ladder.” Itlists reconstructive procedures fromsimplest to the most complex. e morecomplex the problem, the higher one mustgo on the ladder:

• Secondary healingis involves leaving wounds open toheal on their own. Small defects in skinor the lining (mucosa) of the oral cavityor pharynx can heal fine this way.

• Primary closureis is the simplest closure where theedges of skin or mucosa are pulledtogether without significant tension andsutured. is leaves no open wounds.

• Skin graftsSometimes wounds are so large thathealing by secondary intention orprimary closure is not possible. A skingraft is a thin piece of skin usually takenfrom the thigh and is used to recon structwounds in the oral cavity or certainareas of head and neck skin. A skin grafthas no blood supply of its own and isdependent on the wound bed fornutrients while new blood vessels grow.

• Local or regional flapsA flap is any combination of tissues(skin, fat, muscle, bone) that has its ownblood supply, unlike a graft. A local orregional flap is derived from tissues nearthe area that needs to be reconstructed.An example is the pectoralis major (chestmuscle) flap to reconstruct the pharynx.

• Free flapsA free flap is tissue taken from a distantsite, such as the thigh (anterolateral thigh[ALT] flap) or leg (free fibula flap). Everyfree flap has an artery and vein that mustbe cut then re-attached to blood vesselsin the neck. Without an artery bringingblood into the flap and a vein bringingblood out, the tissue will not survive.Free flaps allow for the reconstruction oflarge and complex defects.

Reconstructive surgery is an integral partof cancer care when a cancer operationinvolves the removal of tissue importantfor speech, swallowing, and appearance.ere are a variety of techniques that canbe tailored to meet a patient’s needs andimprove quality of life.

Since I received the wonderful “no cancerin there” message in April of 2012, I’vehad the honor of volunteering in manycapacities to reach out to others. I’ve beenattending (as my schedule permits) theHead and Neck Cancer Support Groupmeeting in Bethel Park. I’ve become amember of the American Cancer Society’sVoice of Hope Program. I’ve become amember of the American Cancer Society’sRelay for Life Advisory Training Team.I’ve had the opportunity to share myarticle “10 Ways to Cope with Cancer” inthe Winter 2012 edition of Headway aswell as the national publication Copingwith Cancer. And I’ve met some ratherincredible folks along the way. e energyand passion that I’ve felt is nothing shortof amazing. I can tell you this, with fullconfi dence, we are loved – loved by peoplewho don’t even know us.

Why so involved? In most of the cases, thespeeches of hope and encouragement, theconversations and the relationships, thefundraising and events, really aren’t doinganything for me...on the surface. Mytreatments are done and my recovery isprogressing swimmingly. But deep down,deep down in my inner self, my involve -ment these past months has allowed me tofulfill my destiny and thank those whowere fighting for me/with me during mydarkest moments. And, my involvementhas given me the opportunity to thank allof those people who were fighting forUS...each and every one of us whounderstands, intimately, the challengesthat face the person who hears the words“you have cancer”. I do what I do for you!My voice becomes the voice of many.

I’ll never forget all of the people who wereso wonderful to me – my wife anddaughters, my family, my co-workers, mychurch...and the countless others. eytoo were so instrumental that I am drivento help others.

With each and every interaction that Ihave, from a one-on-one conversation to aspeech before 800 high school students, Ialways, and on the behalf of all cancersurvivors and their caregivers, thank thoseengaged in the fight. I encourage them toremain involved so that we can rid thisworld of cancer so our future generationsnever have to hear those words, andfinally, I ask God’s blessing on them.

It’s all about three undeniably significantwords – faith, love and hope.

H E A DWAY 3

Cancer – whatta, whatta,whatta…BLESSING!By Glenn Brooks Cancer Survivorgabrooks@yahoo.com

With a title like that, certainly you wantto read a little further, primarily to figureout – okay, what is this guy on and wherecan I get some? Please let me explain...

In September 2011, I was diagnosed withStage IV head and neck cancer, originatingin the lingual tonsil. My treatmentincluded chemotherapy, radiation,hydration therapy, tonsillectomy, feedingtube, extended stays in the hospital, andtwo and a half months of not being ableto eat, drink, or speak. As I write this, Ikeep looking back at the title of thispiece... cancer a blessing...really? Perhaps I am a bit crazy.

Let me set one thing straight – given thechoice, I would have never welcomedcancer’s invasion of my body. Heck, Iwouldn’t wish that on anyone. But theharsh, cruel, reality is this – cancer DIDinvade my body, and I have been given anopportunity, many opportunities if youwould, to use that cancer experience tohelp others. THAT is the blessing...adivine calling. I genuinely believe that mycalling is to seize as many opportunities aspossible to reach out to others as theyendure through treatments and recovery,as well as to thank those who have beenfighting for the cancer patient – manytimes without the patient’s knowledge.

Mind you, this approach may not be foreveryone – and that’s okay. Some cancerpatients, as I have learned, wish to keeptheir experiences private...they just wantthe memories of that season in their life toquietly go away. Again, that’s okay. But forme, I choose to be an activist for cancerresearch, recovery and response.

4H E A DWAY

continued on page 5

Will it go away once my cancer iscured?While your ability to swallow may not beas it was before cancer, many patients areable to learn how to swallow in a new andsafe way which becomes a “new normal”.Some people are able to eat solid foodsand drink liquids after head and neckcancer treatment. Others may consume a “modified” diet such as pureed foods.Humans learn to swallow as infants andpractice this everyday by eating anddrinking. A 50-year old patient who haseaten three meals a day has practicedeating a meal nearly 55,000 times. It takes patience and time to condition theswallow ing muscles, nerves, and the brainto swallow in a new way.

What happens if dysphagia isn’ttreated?Complications of dysphagia includemalnutrition and pneumonia, which canbe life-threatening. Dysphagia may alsoimpact the enjoyment of day-to-day life.

What causes swallowing problems?Both the cancer itself and its treatmentcan cause swallowing problems. Some -times, patients first discover the cancerbecause of difficulty swallowing. Othertimes, the treatment of cancer by surgeryand/or radiation can cause swallowingproblems. Swallowing problems nearlyalways worsen during times of activetreatment, such as radiation. Swallowingproblems can persist or even worsen foryears after treatment.

What exactly is swallowing therapy?Swallowing therapy is personalized to eachperson’s swallowing problems and strengths.Sessions typically include helping patientsselect food choices, learning exercises topractice to build strength and learn newhabits, and implement to make swallow -ing safer and more comfortable. A courseof therapy may include weekly meetingswith the swallowing therapist for eightweeks, and independent practice severaltimes daily. e patient often returns tothe Swallowing Disorders Clinic forevaluation following treatment. Manypatients continue independent practice for the rest of their lives.

If I have a feeding tube, do I needswallowing therapy?Yes. Just like athletes practice before a game,patients can practice swallowing beforethere is actually food or drink. Patients

that practice swallowing, even withoutfood or drink, may have a better chance ofbeing able to have the feeding tuberemoved and take nutrition by mouth.

Does swallowing therapy really work?Yes. A study at UCLA’s Jonsson Compre -hensive Cancer Center demonstrated thatswallowing therapy decreased the likeli -hood that patients receiving radiationwould need a feeding tube or suffer otherunwanted swallowing side effects, versussimilar patients not participating in therapy.

What is stereotacticradiosurgery?By Jose L. Mattos, MD, MPH Resident, Department of Otolaryngology,Head and Neck Surgery, University ofPittsburgh Medical Center

Treatment of tumors and growths areapproached in different ways dependingon their type and location. One commonoption available is radiation therapy.Standard radiation treatment delivershigh-powered radiation with the goal ofshrinking a tumor, or sometimes tocontrol or slow down its growth, and usesmultiple doses of radiation given over aprolonged time period. Over the past fewyears, a new type of radiation therapy hasemerged called Stereotactic radiosurgery,abbreviated as SRS.

SRS is a type of treatment that uses focusedbeams of radiation to treat tumors andabnormal growths. e idea behind thistherapy is to maximize the amount ofradiation that is given to a tumor, whiletrying to minimize damage to the sur -rounding normal tissues. SRS achieves thisby focusing multiple narrow radiationbeams on one tumor. Each individual beamis not very powerful, and so does not causemuch damage to the tissue that is goesthrough. However, when all of these beamscombine on their target (the tumor), their combined power can now treat theabnormal tissue. In this way, SRS can givea high dose of radiation in a shorteramount of time and with greater accuracythan standard radiation treatments.

SRS began as a therapy used for braintumors that were either too risky to removesurgically, or for which standard radiationwould have caused too much damage to

My friends, I will continue to representyou and I will continue to remain involved.My self-centric days are over – and myothers-centric days are before me. ankyou, and God bless you!

This issue we asked doctors and speech-language pathologists fromUPMC Swallowing Disorders Clinic to answer some questions regardingswallowing problems in head and neck cancer patients.

What is dysphagia?By Kara DavisResident in Otolaryngology, Head andNeck Surgery, University of PittsburghMedical Center

Dysphagia is the medical term forswallowing problems, which involvesdifficulty moving liquids, pills, or solidsfrom the lips to the stomach. Normalswallowing function is a complex actionthat is practiced nearly every day of ourlives. Cancer in any body part along thispathway almost always affects swallowing.

How are swallowing problems diagnosed?We rely heavily on a team approach. ere are different ways of diagnosingswallowing problems, but most patientsundergo either a fiberoptic endoscopicevaluation of swallowing (FEES) test, a modified barium swallow (MBS) test, or both. During an FEES test the patientis asked to swallow dyed foods while thedoctor and speech-language pathologistwatch with a camera on the inside of thethroat. During an MBS test, the patientswallows foods with barium dye while aradiologist and speech-language path -ologist watch the swallowing by X-rayfrom the outside. In either test, food andliquids are considered “down the wrongpipe” if there is dye in or near the voicebox, which is the top of the windpipe.

How do I know if I have swallowingproblems?Hints that suggest swallowing problemsinclude changes in the voice such as a“wet” or “gurgly” voice, lung infections or pneumonias, weight loss, decreasedinterest in eating, and coughing, chokingor gagging with eating or drinking.

the surrounding brain tissue. However,recently SRS has begun to be used inmany other types of tumors and cancers,including those in the head and neck. ehead and neck, like the brain, have manyimportant structures in close proximity toeach other. ese structures are critical tovision, speech, swallowing, taste, andoverall appearance, and can be affected inthe treatment of head and neck tumors.

SRS is well suited for head and neckcancer. When a patient presents with ahead and neck tumor, the usual treatmentregimen may involve a combination ofsurgery, radiation, and/or chemotherapydepending on the size of the tumor andthe disease stage. How much radiation canbe given in head and neck cancer islimited by how much radiation the nearbynormal tissue can withstand. SRS is ableto maximize the amount of radiation on atumor while decreasing the radiation thatnormal tissue receives. is can beparticularly useful in patients who havealready had a full standard radiationtreatment and then suffer a recurrence. Inthis case, the normal tissue has alreadyreceived as much standard radiation as itcan stand. SRS allows doctors to delivermore radiation to the recurrent tumor,and decrease damage to the importantnearby structures that are not affected.

Despite its name, stereotactic radiosurgeryis not a surgical procedure. ere are noscalpels or incisions needed, so this meansreduced risk of bleeding and infection forpatients. ere is also no need for generalanesthesia or a breathing tube, so SRSeliminates the risks associated withanesthesia. is is important to patientswho may be elderly, or have medicalconditions that prevent them fromundergoing general anesthesia. SRSpatients typically go home the same dayafter the treatment is completed, althoughsometimes a hospital stay is needed.

ere is currently much ongoing researchin this field, and determining whetherSRS therapy is right for you depends onmany factors. Your doctor can have apersonalized discussion with you regardingyour treatment options. SRS may be apowerful alternative for patients withtumors in places that are difficult to treator for those who have already undergonestandard radiation.

H E A DWAY 5

The sacred work ofcaregivingBy Patricia SmithFounder, Compassion Fatigue Awareness Project

Traditional caregiving practices arechanging. e idea of one person takingfull responsibility of providing care toanother person is slowly fading away. In itsplace is a new concept embracing the ideaof partnership, where both the caregiverand the person receiving care worktogether to affect help, hope and healing.is mode of care is particularly beneficialwhere cancer patients are concerned.

is new model of providing healthy careto others is emerging across the helpingprofessions as well as with family care -givers. No longer is caregiving seen as aone-way street where a caregiver is put inthe position of being traumatized byanother person who is incapacitated, inpain, suffering or preparing to die.

True empathetic, compassionate care isnow viewed as a two-way street. Whilebeing of service to another, a caregiver iscalled upon to be the receiver and bearerof the “gifts” the suffering impart to thosewho cross his or her path includingmedical professionals, family members,friends or religious. For a caregiver, there is much to be learned from cancer patientsin pain and suffering, and preparing todie. And for those in pain, who aresuffering and in the process of dying, there is a wealth of wisdom to be shared.

In 2000, an Oregon hospital inaugurated anin-house program called No One Dies Alone.e purpose of the program was to providecompanionship and care to a dying patientwhen no family members or friends existedor couldn’t be present. Often, the need forthis service is requested by a member ofthe chaplain services staff who is called into comfort the patient or, in Catholichospitals, provide Last Rites. Com -passionate Companions, as these programvolunteers are called, receive training andschedule caregiving rituals where they arepresent onsite with the patient anywherebetween 1-36 hours. e program caughton and is now offered throughout hospitalsand hospices nationwide.

In my health care public relations work, Iinterviewed a number of associates whovolunteer for the No One Dies Aloneprogram in one of the hospitals where I

serve. What I learned was surprising tome. Every volunteer told personal storieshighlighting the life-affirming gifts thatflowed between caregiver and patient.Incidents of trauma appeared to be at aminimum and in its place was a spirit oflove, empathy and compassion. At the endof each interview, I asked the caregiverwhat he or she did to provide authentic,sustainable self-care in order to lowerlevels of compassion fatigue and continueto do the intense work they do. Manyoffered ideas such as walking in thewoods, being with loved ones, or enjoyinghobbies such as fishing or journaling. One of the chaplains answered in this way,“When I hold the hand of a dying person,I am filled up”.

In the new mode of caring, a cancerpatient would hold up his end of theprocess and take an active role in allowinghis life, no matter how debilitating, toretain a level of quality and dignity. isincludes completion of advance directives,wills, organ donation forms, and otherend-of-life documents to help familymembers avoid heart-wrenching decisions.Patients are asked not only to appreciateand value the care they are receiving, butthey are also being asked to reciprocate inkindness, patience and respect.

is new model is based on the idea that a patient actually enters into a healthycaring relationship with his or her careproviders. e relationship is based onrespect, trust and honesty – a partnershipwhere everyone involved does his or herbest to create both a culture of curing anda culture of caring.

e Compassion Fatigue Awareness Project(www.compassionfatigue.org) presentsworkshops nationwide educating caregivers inall the helping professions on how to recognizeand manage compassion fatigue. PatriciaSmith is the author of the award-winningbook “To Weep for a Stranger: CompassionFatigue in Caregiving”, along with othertraining materials available on Amazon.com.

Stereotactic radiosurgerycontinued from page 4

For additional topics on the prevention,detection and treat ment of cancer, including head and neck cancer, visit http://www.upmc cancercenters.com/portal_headneck/publications.cfmfor archived issues of Headway.

Head and neck cancer patients advocate for awarenessBy Jonas Johnson, MDChair, Department of Otolaryngology, Eye and Ear Institute

On Wednesday, April 22, 2009, a special program was presented for people concerned with recovery from head

and neck cancer. Over 40 head and neck cancer survivors and their families attended a presentation made by

Jeannette Ferguson, Ph.D. Dr. Ferguson is a scientist at the Ohio State University who has been treated for

mouth cancer. Her presentation, “A Head and Neck Cancer Journey: My Evolution from Patient to Advocate”,

detailed the excitement and potential benefits of advocacy in head and neck cancer. She described how some cancers, such as breast cancer and prostate, have received a great deal of attention from

the media. Famous people who are diagnosed with these cancers often work tirelessly to enhance the resources

that our society devotes to research that will reduce the incidence and improve the survival and quality of life

for individuals with these cancers. Head and neck cancer rarely receives such advocacy by celebrity testimonials

and seems to be a relative orphan disease in this environment. In addition to celebrities and politicians,survivors of head and neck cancer do not have the experience organizing to fight this disease. �ere are no

Komen Foundations (which supports breast cancer research) or CapCUREs (which supports prostate cancer

research) dedicated to supporting head and neck cancer research on a large scale. Dr. Ferguson called attention to the fact that patients with head and neck cancer and their families must be

advocates for the importance of prevention, diagnosis, treatment, and rehabilitation in the field of head and

neck cancer. She urged the audience to be outspoken supporters for the importance of research in head and

neck oncology. Examples of activities could include writing to congress members to encourage support for

cancer research legislation and emphasizing that some resources, such as the state settlements from the tobacco

companies should be prioritized to study head and neck cancer, given the strong contribution of smoking to this

disease. Survivor groups can function both as support groups for the members as well as assist newly diagnosed

patients understand their treatment options and the importance of participating in clinical research studies.

Dr. Ferguson emphasized the important role that advocates can play as part of research programs to help the

investigators understand what is feasible and important for the patient and what is too challenging.�is program was an integral part of the UPMC program on Multidisciplinary Management of Head and Neck

Cancer, sponsored in part by the Specialized Program of Research Excellence (SPORE) in Head and Neck

Cancer of the School of Medicine. �is Head and Neck Cancer SPORE is one of only five such programs

supported by the National Cancer Institute (NCI) in the US.

Page 1Head and neck cancer patients advocate for awareness

Page 2Some free advice from a patient’sperspectiveIntroducing a new team memberinto the cancer care team

Page 3Head and neck radiation therapy –oral complications and itsrecommended dental care

Page 4Why am I so tired? Fatigue duringcancer treatment

Page 5The role of Brachytherapy in thetreatment of head and neck cancer

Page 6Call for participantsHead and Neck Cancer Program websiteContact information

H E A D WAYNEWS ON ADVANCES IN THE PREVENTION, DETECTION, AND TREATMENT OF HEAD AND NECK CANCERS

Summer 2009

Head and Neck OncologyEye & Ear Institute203 Lothrop Street, Ste. 300Pittsburgh, PA 15213P: 412-647-2100

Jennifer R. Grandis, MD, FACSVice Chair for ResearchUPMC Endowed Chair in Head and Neck Cancer Surgical Research Department of Otolaryngology

Jackie LynchHead and Neck SPORE Grant Administrator

University of Pittsburgh Department of Otolaryngology

Contact informationAmerican Cancer Society.......................................1-800-227-2345Assistance with Coping.............................................412-623-5888Cancer Caring Center...............................................412-622-1212Cancer Information and Referral Services .................412-647-2811Clinical Trials............................................................412-383-2084Eye & Ear Foundation..............................................412-383-8756Family Care Giver Education and Support ...............412-623-2867Gilda’s Club of Western PA.......................................412-338-1919Gumberg Family Library ..........................................412-623-4733Head and Neck Cancer Support GroupsNorth Pittsburgh (Wexford/Franklin Park).............412-864-2532South Pittsburgh (Bethel Park/Upper St. Clair) ......412-622-1212

Hopwood Library at UPMC Shadyside ....................412-623-2620Hyperbaric Oxygen Treatment..................................412-647-7480Pain and Supportive Care .........................................412-692-4724Project of Love (comfort pillows)..............................724-266-8007Prostate Cancer Support Group................................412-647-1062Satchels of Caring Foundation..................................412-841-1289Swallowing Disorders CenterUPMC Eye & Ear Institute (Oakland) ...................412-647-6461UPMC Shadyside ...................................................412-621-0123

UPMC Division of Sleep SurgeryMercy .....................................................................412-232-3687Monroeville ............................................................412-374-1260

American Cancer Society website ............................www.cancer.orgHead and Neck Cancer Program website...............................www.upmccancercenters.com/headneck Hillman Cancer Institute website ....................www.upci.upmc.edu

Head and Neck Cancer Program websiteLooking for more information about patient services, currentresearch, clinical trials, news and events and other valuableinformation pertaining to head and neck cancers? Check out the website for the Head and Neck Cancer Program of UPMCCancer Centers at www.upmccancercenters.com/headneck.

Swallowing Disorders Centere UPMC Swallowing Disorders Center is dedicated in helpingpatients with swallowing problems as they undergo treatment forhead and neck cancer. Early intervention with swallowing exerciseshas been linked to better quality of life outcomes. It is highlyrecommended that patients be seen by the swallowing team tobegin a therapy program as soon as the plan for treatment has beenidentified.

e process begins with a swallowing evaluation to assess baselineswallowing function and to identify if posture changes, swallowingstrategies, and/or diet modification will help the patient swallowbetter. While some patients require a feeding tube during the courseof treatment, the ultimate goal is to return to eating and drinkingas soon as possible. We provide assistance during the transitionfrom a modified diet or tube feedings back to a regular diet. Whenreturning to a regular diet is not possible, we help to develop anindividualized plan to take certain foods or liquids safely.

We recently completed a study in which weekly questionnaireswere given to eleven patients as they underwent chemo-radiationtherapy to help us better understand what patients experienceduring the phases of treatment. is type of information is helpingus tailor our therapy approaches to achieve better outcomes. Formost, increased difficulty with swallowing occurs toward the end oftreatment and may even last a few weeks after the completion oftreatment. Once patients are feeling better, the goal is to re-establish the exercise program and begin aggressive intervention sopatients can return to an oral diet safely. e team is alsoparticipating in a multi-center study involving a special device toexercise the tongue. e device measures baseline tongue pressuresso patients can improve strength with practice and meet specifictarget goals. Grip strength assessments are also being used in thecenter to determine if there is a relationship between weakness anddysphagia (difficulty swallowing).

e UPMC Swallowing Disorders Center has two locations:• UPMC Eye & Ear Institute • UPMC Shadyside

(Oakland) • 412-621-0123412-647-6461

Clinical trialsFor more information about head and neck clinical trials, contactAmy at 412-383-2083 or Denise at 412-383-2085.