The Anderson Network is a program of Volunteer Services at MD Anderson Cancer Center

network

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People profiles: Pat and Roger McWaters

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Doctor, DoctorSide effects of chemotherapy

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Anderson Network’s Telephone Support Line

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Survivorship conference

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Summer

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Sharing hope, support and understanding with anyone diagnosed with cancer, regardless of where treatment is or was received.

Working through cancer:Career considerations during and after treatment by Mary Brolley

When she was diagnosed with cervical cancer in 2003, Marisa Ramirez wasn’t sure how she’d balance cancer treatment and employment. AmediarelationsrepresentativeforInterfaithMinistriesforGreaterHouston,Ramirezdidn’tknowhowchemotherapyandradiationwouldaffecther,orhowmuchtimeshe’dneedtorecoverfromeachtreatment. Luckily,shehadanunderstandingboss.“Iwasfortunate—shewasveryflexiblewithme.Astimewenton,IlearnedthatImightbeOKthedayoftreatment,butthreedayslateritwouldreallyhitme.Shesupportedmealltheway.” ForRamirez,workingwasaconstant—ananchor—whenherworldseemedoutofcontrol.“Ireallydidn’tknowwhoIwasgoingtobeasacancerpatient.ButIknewhowtogotoworkMondaythroughFriday,doingmediarelationsforInterfaithMinistries. “Iputmybackupagainstthat,andithelpedmebemorepositive.” Ofcourse,notallcancerpatientscankeepworkingduringtreatment.Certaintypesofcancerortreatmentsmightrequirealongerrecoverytime.Andthosewhocanmightchoosetotakesabbaticalsfromtheirjobstoconcentrateongettingtreatment,thengettinghealthy.

First steps for those who must work through treatment

Forthemanycancerpatientswhomustworktokeeptheirhealthinsurance,takingabreakfromemploymentisnotanoption.Inthatcase,patientsmustfigureouthowtokeeptheirjobswhilefeelingtired,anxiousandmentallyfuzzy.

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Andfirsttheymighthavetowrestlewiththemostbasicchoice:whetherornottotelltheiremployertheyhavecancer.Factorsinthedecisionmaybetheirrelationshipwiththeirsupervisor,thecultureoftheworkplaceandtheflexibilityofthejobitself. Totakethetimefortreatmentappointmentsandtokeeptheminformed,mostpatientsdodecidetotelltheirsupervisorortheirhumanresourcesdepartmentstaff. Whatandhowmuchtoreveal?Thisisadifficultquestion,because,atleastatfirst,itmaybehardtopredictwhenappointmentswillbescheduledandhowyou’llfeelduringtreatment. However,ifpatientscansitdownwiththeirhealthcareteamonceatreatmentplanhasbeenchosen,theycanfindoutwhatthesemedicalexpertspredictintermsoftreatmentsideeffects,aswellasthetimingofnecessaryappointments.

Make a plan, know your rights

Then,patientsmightlisttheirworkdutiesanddeviseaplanforgettingthemdone—orsuggesthowtheyshouldbehandled.Thisplanwillreassuretheiremployerthatcancertreatmentwillbemanageableforbothparties. Therearelegalprotectionsforemployeesfacingcancer.TheAmericansWithDisabilitiesAct(ADA)sheltersemployeesfrombeingfiredsimplybecausetheyhaveadisability,andcancermaybeconsideredadisabilityinsomecases.TheFamilyandMedicalLeaveActallowsemployeestotakeacertainamountofunpaidtimeofffromwork(fortreatmentortorecoverfromillness)withoutfearofbeingreplacedbytheiremployers. Althoughtheselawsdon’tapplyineveryemploymentsituation,theyareawelcomelegalbackingformany. Anotherconsideration:Aspreparedasyoumightbe,therearearangeofreactionstotreatmentanditseffects.Ifyoumustreturntoworkwhilestillrecovering,itmaybepossible

foryouremployertomakereasonableaccommodationsthroughADAforyour“newnormal”intermsoffatigueorneedfortimeoffforappointments.Ifyourjoballows,itmightevenbepossibleforyoutotelecommuteforawhile. ThenonprofitCancerandCareersorganizationhasawebsitethatincludesagooddealofpracticalinformationforpatients,caregivers,employersandhealthcareprofessionalsaboutcareerconsiderationsafteracancerdiagnosis.Findthelinkathttp://www.cancerandcareers.org.

‘They followed my lead’

Ramirez,whonowworksattheUniversityofHouston,recallsthatalthoughherInterfaithMinistriescoworkersweresupportive,theytreatedherasacolleague,notacancerpatient. “WhenIfirsttoldthem,Iexperiencedamomentarysilence.TheywereworriedaboutmeandhowI’dgetthroughit,”shesays. “IsensedthatifIfeltitwastoomuchtohandle,theywould,too.” Asshegotusedtotherhythmoftreatmentsandrecoveryandlifewenton,Ramirez’sconfidenceandcompetencereassuredthem,andtheyrespondedwithkindnessbutnotundueworry.“Theyfollowedmylead,”shesays. Whichdoesn’tmeantheyweren’tconcerned.“ItwasInterfaithMinistries;Ihadpeopleofallfaithsprayingforme,”shelaughs.

In the fall issue of Network, we’ll explore legal and insurance issues of working during cancer treatment. Share your story about working through cancer by e-mailing mbrolley@mdanderson.org.

“I sensed that if I felt it was too much to handle, they would, too.”

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Patcouldbetheposterchildforanactivelife.Thoughstillundergoingtreatmentforhercancer,shekeepsanimpressiveschedule. BesidesherworkintheHospitalityCenter,shevolunteerswithAndersonNetwork’sPatientandCaregiverTelephoneSupportLine,offeringencouragementtowomendealingwiththesamediagnosis.Shecontinuestoenjoysportsandstaysactivewithinherchurch,wheresheandRogersinginthechoir. “IplaygolfandtenniswhenIcan,”Patsays.“It’smytherapy.Stayingbusykeepsmegoing.”

Find out more about Anderson Network at www.mdanderson.org/andersonnetwork.

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People profiles

Couple create a haven for patients and caregivers

by Lana Maciel

Pat McWaters understands the importance of a welcoming atmosphere and how a smile or a kind shoulder can lift a patient’s spirits. It’sthekindofinspirationshe’sreceivedatMDAndersonsincebeingdiagnosedwithbreastcancerin2003,andthekindofatmospheresheandherhusbandRogertrytocreateforotherMDAndersonpatients. EveryFridayafternoonyoucanfindPatandRogerintheMaysClinicHospitalityCenter,servingrefreshments,visitingwithpatientsandcaregiversandofferingawarmwelcometoall. “WeenjoyhelpingpeoplewhoarenewtoMDAndersonandthecancerexperience,”Patsays.“I’vegonethroughthisbefore,andI’mstillgoingthroughit,soIwanttobeheretogiveotherpatientshope.” Inthefiveyearsthey’vevolunteered,PatandRogerhavebecomeanintegralpartofthelifeoftheHospitalityCenter,aprogramoftheAndersonNetwork.Theyoffercoffee,teaorcookies,orjustpassthetimewithpatientsorcaregiversbyhelpingthemcompleteajigsawpuzzle. It’sarewardingexperience,Rogersays,andonethathasbroughtalotofgoodfriendsintotheirlives.

Anticipating visitors’ needs is top priority

Patunderstandstheemotionalexperienceotherpatientsaregoingthrough. “Youcanoftensensepeople’sneedsorwhatthey’refeelingwhentheycomein,”shesays.“Somearemoreprivateandarejustlookingforsomequiettime,whileotherswantafriendlyfacetotalkto.” HavingbeenatPat’ssidethroughouthertreatment,RogercanrelatetothecaregiverswhovisittheHospitalityCenter.Heoftenhelpsthosewhoarenewtotheexperienceofcaringforalovedonewithcancer. “ThebestadviceIgivethemistojusthelpthepatientbeasactiveascanbe,”Rogersays.

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We asked Millie Toth, senior nursing instructor in the Department of Nursing Professional Development, to give us an overview of the side effects cancer patients may face during and after chemotherapy.

What are the most common side effects of chemotherapy?

Becausechemotherapyattacksfast-dividingcells,sideeffectsaretriggeredinplaceswheresuchcellsarecommon,likethebonemarrow,thegastrointestinal(GI)tract,theskinandhairfollicles. Lowwhitebloodcellconditions,likeleucopeniaandneutropenia,mightputpatientsatincreasedriskforinfection.Frequenthandwashingisthebestwaytominimizethisrisk. Otherpatientsmaydevelopanemiawhentheirredbloodcellcountisreduced.Anemicpatientsmaynoticeincreasedfatigue,afastheartbeatandshortnessofbreath.Whenplateletlevelsarereduced,asinthrombocytopenia,bleedingprecautionsmustbeimplemented,suchasshavingwithelectricrazorsandminimizingactivitiesthathaveincreasedpotentialfortrauma. GItractsymptomsmayincludeoralmucositis(soremouth),pharyngitis(sorethroat),esophagitis(difficultyswallowing),nauseaandvomiting,diarrheaandlossofappetite(anorexia).Withcertainchemotherapyagents,suchasvincaalkaloidslikevincristineandvinblastine,constipationmaybeasideeffectaswell.

Can you explain the nausea and vomiting that accompany chemotherapy?

Thedegreeofnauseaandvomitingdependsonthetreatmentregimen.Theagent(s),doseandroutemayallcontributetoitsintensity.We’velearnedalotaboutthecauses

ofvomitingoverthepastfewyears.Severalagentshelpeliminateorminimizethevomitingreflex.Ondansetron(Zofran®)andaprepitant(Emend®)blockdifferent“vomiting”receptorstominimizenauseaandvomiting. Ifyou’reonahighlyemetogenic(vomit-inducing)regimen,it’simportanttomaintainaconstantbloodleveloftheantiemetic(vomit-preventing)agentuntilthechemotherapyhasbeeneliminatedfromthebody.Don’twaituntilyou“sense”nauseatotakenauseamedication;insteadtrytakingit30-60minutesbeforeameal.

Do you alert patients to the side effects they might encounter?

Yes.Patientsmustbeawareoftheagentsandtreatmentthey’llreceive,includingrationaleandproactivemanagementofpotentialsideeffects.Patientsneedtorealizethatthey’repartofthetreatmentteam. Irecommendthattheyandtheirfamilieslearnasmuchabouttheirdiseaseandtreatmentaspossible.Patientsshouldadvocateforthemselves,andmonitorandhaveabasicunderstandingofimportantbloodvalues,suchasplatelet,neutrophil,hemoglobin,renalandliverfunctionlevels. Iurgepatientstomaintaina“diary”bindertorecordsideeffects(fromzeroto10),writequestionsfortheirdoctors,takenotesandfileroutinebloodvalues/reportsforreference.This“logging”mayhelppatientsbetterunderstandandmanagethisexperience,andgainmorecontrol.

Millie Toth answers more questions about chemotherapy side effects — and treatments for them — in Network’s online version. Click on www.mdanderson.org/publications/network.

Doctor, DoctorFocus on chemotherapy

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Themenspokeforseveralminutes,thenthereassuredpatientdecidedtogoaheadwithsurgery.Morethanayearlater,heisdoingwell. “Hewasatoughguy,buthewasfrightenedanddesperate.We(healthcareprofessionals)aresympathetic,butwehaven’twalkedinpatients’shoes,”SarabiaCerdasays.“Itwasgreattobeabletoconnecthimwithsomeonewhounderstoodexactlywhathewasfeeling.” Afterhermemorableencounterwiththesupportline,SarabiaCerdaleftShortavoicemailtothankher.Shorthassavedthemessagefornearly18months. “Shesaidmycallmadeahugedifferencetothepatient.Infact,shesaidIwas‘MakingCancerHistory®,’”Shortsays.“Ilovedit.”

Bridging the gap to share expertise

ThesupportlineisamongAndersonNetwork’smostsuccessfulprograms.Since1986,ithaslinkedmorethan20,000patientsnationwide.Callersandvolunteersarewelcome,nomatterwheretheyreceivedorarereceivingtreatment. Itsaim—toconnectthoseatdifferentstagesofthecancerjourneysotheycantapintoeachothers’experiences—bridgesthegapbetweenpatientswhomightnototherwisemeet.It’salsoavailabletocaregiverswho’dliketospeakwithanothercaregiverofapatientsimilartotheirownlovedone.Thereisalsoaseparatedatabaseofandforpediatriccaregivers. TelephonevolunteersarescreenedandtrainedbyAndersonNetworkstaff.Additionaltrainingisalsoavailableonline.Volunteersareencouragedtobeavoiceofhopeandsupport,butnottogivemedicaladviceorpromoteMDAnderson. Whilemostcallersarenewtothecancerexperience,someareyearsbeyondtreatment,saysLauraHearn,programcoordinatorofthesupportline.Ascancertreatmentsevolve,volunteerswithcertaindiagnosesandtreatmenthistoriesareinspecialdemand,shesays,asarebilingualandyoungadultsurvivors.

To become a telephone support volunteer or to be connected with another caregiver or survivor, call 800-345-6324 or 713-792-2553, or use the online contact form at www.mdanderson.org/andersonnetwork.

Lifeline: Patient-to-patient telephone support makes the difference

by Mary Brolley

“May I make a quick call?” Elizabeth Sarabia Cerda asked the distressed patient. Inapreparatorymeetingbeforesurgerytoinserthischemotherapyport,themiddle-agedmanhadbecomeagitated,thenhadburstintotearsandsaid,“I’mgoingtodieanyway.WhyshouldIdothis?” SarabiaCerda,aphysicianassistantinMDAnderson’sDepartmentofSurgery,rememberedtheAndersonNetworkTelephoneSupportLine,whichconnectspatientswithsurvivorswhosharetheirdiagnosis,and,ifpossible,treatmenthistory. ShecalledSamShort,senioradministrativeassistantfortheAndersonNetwork,apatientandcaregiversupportorganization.Shortquicklysearchedthedatabaseofnearly1,200telephonesupportvolunteerstofindonewithasimilardiagnosisandtreatmentplan. Within15minutes,SarabiaCerdarecalls,thepatient’scellphonerang.OntheothersideofthelinewasaTennesseemanwhohadsurvivedthesamediagnosis,metastasisandsurgery.

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Researcher, physician and author Servan-Schreiber

headlines cancer survivorship conference

Hearingthewords“Youhaveabraintumor”isnotforthefaintofheart. WhenDavidServan-Schreiber,M.D.,Ph.D.,heardthisnewsattheageof31,therisingstarinneuroscienceandpsychiatrywentthroughpredictablecyclesoffear,worryandconfusion. Aftertraditionaltreatmentandarecurrenceofthetumorafewyearslater,Servan-Schreiberbeganaquesttodiscoverwhathecoulddotohelppreventthecancerfromreturning.Hisexhaustiveresearchintotheeffectsofone’senvironment,lifestyle—andperhapsevenpasttraumaticepisodes—ledtothewritingofhisinternationalbestseller,“Anticancer:ANewWayofLife,”firstpublishedin2007witharevisededitionin2009. NowanadjunctfacultymemberinMDAnderson’sIntegrativeMedicineProgram,Servan-ScheiberisthekeynotespeakerforAndersonNetwork’sCancerSurvivorshipConference,Sept.24-25. PleasejoinusattheOmniWestsideinHoustontolearnmoreabouttheissuescancersurvivorsface,tomeetandsharewithothersurvivors,totakewellnessclassesandhavefun.

Speakers, breakout sessions, medical panel

Opentoallcancerpatients,theirfamiliesandcaregivers,theconferenceincludesnearlytwodozeninformativebreakoutsessions,including:

• navigatingtheworldofhealthinsurance, • theinsandoutsofbonemarrowtransplantation, • canceranditsrelationtobonehealth, • hereditarycancersyndromesandgenetictesting, • bodyimageconcerns,and • integrativeoncologyandthepoweroflifestylechange.

MDAndersonPresidentJohnMendelsohn,M.D.,willleadthepopularmedicalpanelonSaturdaymorning. OnSaturdayafternoon,GailGoodwinandJeffreyWeinberg,M.D.,willsharethestoryofGoodwin’sdiagnosiswithbraincancerin2009andthesurgeryandtreatmentthatfollowed.Titled“SheHadHerHeadExamined:APatientandHerSurgeonSharetheInsideStory,”thetalkwillfeatureGoodwin’sobservationsontheexperienceofgoingfrombeinganMDAndersonemployeetoapatient.

ThankstoMDAnderson,sponsorsandindividualdonors,thecostoftheconferenceisjust$50forearlyregistrants,whichincludesallmeals,activitiesandself-parking. RegistrationisavailableonlineuntilSept.17.Afterthatdate,participantsmaypay$60atthedooronthedayoftheconference. Formoreinformationortoregister,checktheconferencewebsiteorcall713-792-2553inHouston,800-345-6324tollfree. TheAndersonNetwork,anorganizationwithsupportandeducationalservicesforpatients/survivors,theirfamiliesandcaregivers,isaprogramoftheDepartmentofVolunteerServices.

For more information about Anderson Network’s Cancer Survivorship Conference, including a complete agenda, visit www.mdanderson.org/patientconference.

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Conference FactsRegistration deadline:Friday, Sept. 17

Registration online:www.mdanderson.org/patientconference

Scholarships:A limited number of scholarships are available for patients and caregivers. To obtain an application, go to www.mdanderson.org/patientconference or call the Anderson Network at 800-345-6324 or 713-792-2553.

Conference location: Omni Houston Hotel Westside, 13210 Katy Freeway, Houston, TX 77079

Hotel rates:The hotel is offering a group room rate of $95 for reservations made by Sept. 9.

For reservations and directions, call 1-800-THE-OMNI (1-800-843-6664).

Be sure to mention that you want The University of Texas MD Anderson group rate.

Parking:Self-parking is available at no charge. Valet parking is at your own expense.

PhotographyBy registering, I understand that MD Anderson will be photographing and/or recording the Survivorship Conference and that as a participant in the conference, my image or voice may be included in the photos and/or recordings made by or for MD Anderson. By registering for and/or participating in the conference (1) I irrevocably give permission to MD Anderson to have photographs and audio or audiovisual recordings taken or made of me in connection with the conference activities (the “Media Materials”) and to use, copy, distribute, display, exhibit, and release the Media Materials in connection with any of its business, educational, professional, or fundraising activities; (2) I release MD Anderson and The University of Texas System and their Board of Regents, officers, agents, and employees from any and all liability in connection with the Media Materials; and (3) I waive all rights, interest, or claims for payment or other compensa-tion in connection with any use, copying, distribution, display, exhibition, or release of the Media Materials.

For additional conference information, including transportation to and from Houston airports, call the Anderson Network at 800-345-6324 or 713-792-2553, or visit www.mdanderson.org/patientconference.

Cancer Survivorship ConferenceOmni Houston Hotel Westside • Sept. 24-25, 2010

Please complete one registration form per person (you may copy additional forms) and return to:

Cancer Survivorship Conference Office of Conference Services – 1381 UT MD Anderson Cancer Center P.O. Box 301439 Houston, Texas 77230

Name: Last ____________________________ First _______________________________

Address: _____________________________________________________________________

City: __________________________________________ State: _____________________

Zip: __________________ Daytime phone: _____________________________________

E-mail address: _______________________________________________________________

Registration fee: Registration is $50 until Sept. 17. After that date, participants must register at the conference for a late registration fee of $60. Conference fee covers all activities and meals, including self-parking, Friday night banquet, Saturday luncheon and coffee breaks throughout the conference. I will attend/need:

the banquet on Friday night q yes q no

vegetarian meals q yes q no

Breakout sessions: If you’re able to go online to www.mdanderson.org/patientconference and consult the conference agenda, please choose the number of the breakout session you would like to attend in each cluster on Friday and Saturday and list by number here:

Friday, Cluster 1 ________________________ Friday, Cluster 2 ______________________

Friday, Cluster 3 ________________________ Saturday, Cluster 4 ___________________

Payment information: The registration fee for the conference is $50, which covers only a minimal amount of the cost of the conference. The price is kept low due to the generosity of MD Anderson, corporations and individuals.

Please make checks payable to UT MD Anderson Cancer Center. If you are paying by credit card, check one:

q VISA q MasterCard q American Express

Total amount to be charged: ____________________________________________________

Card number: ________________________________________ Exp. date: ____________

Authorized signature: _________________________________________________________

Those paying by credit card may fax the registration form to 713-794-1724, but an authorized signature must accompany the form.

Conference Registration

I am a

q Patient/Survivor q Caregiver/Family q MD Anderson Volunteer q Other

If you require a wheelchair, oxygen, etc., please plan to bring your own equipment to the conference.

For the protection of patients undergoing treatment, children under 16 years of age are not allowed.

Page 8 Briefs

For nearly 70 years, MD Anderson has been defined by a single, powerful idea — eliminating cancer. Itinspireseveryonewhoworkshere.Itcapturestheessenceofwhatwedo.It’sourmission. WerecentlyintroducedMDAnderson’snewlogo,whichintegratesthismissionintotheinstitution’sname.Theredlinestrikingthroughtheword“Cancer”translatesthe“MakingCancerHistory®”taglineintoadramaticvisualsignature. ThelogoiscentraltoMDAnderson’sbrand,whichishowotherpeopleperceiveourinstitutionandwhatwedo,andencompassesalltheattributesthatmakeusdistinctive. Tolearnmore,checkonlineatwww.mdanderson.org/logo.Toshareyourthoughtsonournewlogo,e-mailNetworkeditorMaryBrolleyatmbrolley@mdanderson.org.

www.mdanderson.org/andersonnetwork

The Anderson Network is a program of Volunteer Services at MD Anderson Cancer Center.

Address changes should be sent to: Mary Brolley The University of Texas MD Anderson Cancer Center Communications Office – Unit 700 6900 Fannin St. Houston, TX 77030-3800 Phone: 713-792-0658 Fax: 713-563-9735 E-mail: mbrolley@mdanderson.org

Articles and photos may be reprinted with permission.

Susan French, Executive Director, Volunteer Services Debbie Schultz, Assistant Director, Volunteer Services/ Anderson Network Mary Brolley, Writer/Editor, NetworkLana Maciel, Contributing Writer Gini Reed, Graphic Design Pamela Lewis, Chair, Anderson Network

© 2010 The University of Texas MD Anderson Cancer Center

network

The University of Texas

MD Anderson Cancer Center

DivisionofPublicAffairs156300/18050661–Unit700

P.O.Box301439

Houston,TX77030-1439

Non-Profit Org.U.S. Postage

PAIDHouston, TexasPermit No. 7052

Register online now for Anderson Network’s Cancer Survivorship Conference Sept. 24-25 www.mdanderson.org/patientconference

713-792-2553 800-345-6424

New logo renews commitment to our mission