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summer2010:volume16,issue1newsletterofthemyelodysplasticsyndromesfoundationContentsFromtheGuestEditor'sDesk2NewsFromTheFoundation5FoundationInitiatives6DrugNews7YoungInvestigatorGrantProgram9MeetingHighlights/Announcements10PatientServices14PatientForumsandSupportGroups15PatientsShareTheirStories19PatientTributes22NutritionalHealth23PersonalHealth26MDSCentersofExcellence28InformationonClinicalTrials32EducationalResources34FoundationPublications38ContributionstotheFoundation39InMemoriam40GeneralInformation451TheMDSFoundationhasmoveditsheadquartersfromCrosswickstoYardville,NewJersey.
Wearealsomovingforwardwithexcitingplanstoprovideservicestoourpatient,caregiver,physician,researcherandnursecommunitiesmoreeffectivelyandefficiently.
DidyouknowthattheMDSFoundationregularlysponsorsworkshopstohelpphysiciansdiagnoseandtreatthediseaseOrthattheFoundationissponsoringaprojecttoanalyzedatafrom11,000patientstoaidhematologistsandpatientsinrefiningtheirprognosesEveryyeartheFoundationholdseducationalsymposiaforoncologynursestobetterequipthemtoserveMDSpatients.
Beforetheendof2010,theFoundationwillreachoutwithfivepatientforumsin:Detroit,MI;SanAntonio,TX;Gainesville,FL;SanFrancisco,CA;andDurham,NC.
InMayof2011,theFoundationwillbringtogetherinEdinburgh,ScotlandtheleadingMDSresearchexpertsworldwidetocomparenotesandeducateasmanyasathousandhematologistsonthelatestresearchadvancesandfindings.
Meanwhile,atournewoffice,ourPatientLiaisoncontinuestotakecallsfromnewlydiagnosedpatientsandtheircaregivers,referthemtothenearestCenterofExcellenceandhelpguidethemthroughconfusingperiodsafterdiagnosisofthedisease.
OurwebsiteoffersSPECIALANNOUNCEMENTTheMDSFoundationMovesForwardandNeedsYourHelp!
NEWADDRESSpatientsandcaregiversaforumtodiscusstheirquestionsandconcernswitheachother.
WearealsoplanningaprogramtoestablishindependentMDSpatientgroupsincountriesaroundtheworld.
Thesearevitallyimportanttasksaimedathelpingpatientslivewiththediseasewhileresearchcontinuestosearchforawaytocureit—oratleastdevelopmethodstoreduceitssymptoms.
However,noneofthisimportantworkcancontinuewithoutfinancialsupportfromthewiderMDScommunity.
ThatiswhyweareaskingyoutobecomeamemberoftheMDSFoundationand,everyyear,contributefinancialassistancetokeepusfocusedonthemonumentaltaskathand.
Pleasealsocontactusforassistancewithtax-advantagedplannedgifts,whetherduringyourlifetimeorunderyourestateplans.
Youcanbeavitalpartoftheprocessbysendingyourtax-deductiblecontributionto:TheMDSFoundation4573SouthBroadStreetSuite150Yardville,NJ08620USAWecanbereachedfromwithintheUSat800-MDS-0839andfromoutsidetheUSat609-298-1035.
Ourfaxnumberis609-298-0590andouremailaddressispatientliaison@mds-foundation.
org.
2reactiveradicalstocomeintobeing.
Thesecanattacklipids,proteins,andDNA,inducingcellulardamagethatultimatelybecomesclinicallymanifestasorgandysfunction.
Ironisnotdangerousifheldinthestoragemoleculeferritinorboundtothetransportproteintransferrin.
Oncethestorageandtransportcapacitiesofthesemoleculesareexceeded,however,non-transferrin-boundiron(NTBI)beginstoappearinthebloodplasma.
Theredox-reactivepartofNTBI,knownaslabileplasmairon(LPI),israpidlytakenupintocells.
WhentheintracellularpoolofLPIbecomestoolarge,itseffectscannolongerbebufferedbythecell'santioxidativemechanisms,andtheformationofradicalsensues.
ClinicalConsequencesofIronOverloadMostofourknowledgeoftheclinicalconsequencesofironoverloadcomesfromtwodiseases,namelyhereditaryhemo-chromatosis(HH)andthalassemiamajor.
Patientswithhereditaryhemochromatosisdevelopironoverloadfromdysregulated,i.
e.
permanentlyincreased,ironabsorptioninthegut.
Ironslowlybutsteadilyaccumulatesinseveralorgans,particularlyintheliver,pancreas,andheart,whereitcausesorgandamagethatcanleadtolivercirrhosis,diabetesmellitus,andcardiacdisease.
ItoftentakesseveraldecadesuntiltheclinicalsequelaeofHHmanifestthemselves.
Thedevelopmentofcomplicationsismoredramaticinpatientswiththalassemiamajorwhodevelopironoverloadmainlyfromchronictransfusiontherapystartinginearlychildhood.
Whenironchelatorswherenotyetavailable,mostpatientswiththalassemiamajordiedintheirsecondorthirddecadeoflifefromintractableheartfailure,attributabletocardiacironoverload.
1Onecouldarguethatcertainconse-quencesofironoverload,suchashepaticcirrhosis,donothavetimetobecomesevereinMDSbecausepatientsdonotlivelongenough,duetotheirbonemarrowdiseaseandage-relatedcomorbidities.
Indeed,whileliverironcontentisoftengreatlyincreased,full-blownlivercirrhosisisrareinpatientswithMDS.
WhataboutdiabetesAretrospectiveanalysisinalargeUSMedicaredatabaseshowedthatdiabetesoccurredsignificantlymorefrequentlyinMDSpatientsthanintheoverallMedicarepopulation,2whichmightbeduetotransfusionalironoverloadand/orolderage.
Unfortunately,thecontrolswerenotage-matched.
However,theincreasedfrequencyofdiabeteswasonlyfoundinMDSpatientswhoreceivedRBCtransfusions,notinthosewhoweretransfusion-independent,whicharguesforaroleoftransfusionalironoverload.
WhataboutcardiacproblemsCardiacfailureisalsomorefrequentintransfusedMDSpatients.
2-4However,besidesironoverload,confoundingfactorslikeage-relatedcardiacdiseaseorchronicanemiacomeintoplay.
Anemianecessitatesanincreasedcardiacoutput,whichputsadditionalstrainontheheart.
ItisdifficulttosaytowhatextenttransfusionalironoverloadisresponsibleforcardiacproblemsinpatientswithMDS.
OnlyaminorityofchronicallytransfusedMDSpatientshavesubstantialcardiacironoverloadasassessedbymagneticresonanceimaging.
However,therearedatafromanimalstudiessuggestingthatcardiacdysfunctionmayoccuratlowertissueironconcentrationsthanliverdysfunction.
5Furthermore,theamountofironaccumulatedintheheartmaynotbetheonlydeterminantofiron-relatedcardiacdamage.
Repetitiveorcontinuousexposuretolabileplasmaironmaybeanotherimportantfactor,andtheheartsofelderlyMDSpatientsmaybeparticularlyvulnerabletothiscauseofoxidativestress.
Therelevanceofnon-transferrin-boundironisunderscoredbyclinicalexperienceinthefieldofthalassemiamajor.
Patientswiththalassemiawhodevelopcardiacfailurecanberescuedbyintensivechelationtherapybeforemuchironhasbeenremovedfromtheheart.
Thissuggeststhatsubstantialclinicalbenefitcanbederivedfromdetoxificationofnon-transferrin-boundiron.
WhyisitthatMDSPatientsDevelopIronOverloadPatientswithMDSaccumulateironbytwodifferentmechanisms.
Ontheonehand,ironabsorptioninthegutisincreasedbecauseineffectiveredbloodcellproductioninthebonemarrowgeneratesalong-distancesignalwhichcontinuouslystimulatesduodenalmucosacellstotakeupmoreironthanusual.
However,themaincauseofironoverloadinMDSischronictransfusiontherapy.
Witheveryunitofpackedredbloodcells(RBC),thepatientreceives200–250mgofiron.
Asthenormaldailylosses,andthereforethenormaldailyrequirement,isonly1–2mg,asingleRBCunitmeetsthedemandofabouthalfayear.
Sinceexcessironcannotbeactivelyexcreted,ironoverloadensues.
DoesitMatterIronisanessentialnutrientwhichisneededforavarietyofimportantcellularfunctions.
SowhyshoulditbeadisadvantagetohavealotofirononboardThedictum"Onlythedosekeepsanysubstancefrombeingapoison"(Paracelsus)istrueofironaswell.
Itstoxicityinhighdosescomesfromitsabilitytoreactwithmolecularoxygen,transferringelectronstoittocreateinter-mediateoxygenspecies,whichinturn,inthepresenceofiron,causeyetotherhighlyFromtheGuestEditor'sDeskNorbertGattermann,MD,PhDProfessorDepartmentofHematology,OncologyandClinicalImmunologyHeinrich-Heine-UniversityDüsseldorf,GermanyIronOverloadandItsManagementinMDS3unfavourableprognosticfactor.
9Itmightbearguedthatserumferritin(SF)isnotareliableindicatorofironoverloadbecauseitisalsoinfluencedbyinflammatoryconditions.
However,byandlarge,thereisagoodcorrelationinMDSpatientsbetweenongoingtransfusiontherapy(causingprogressiveironloading)andrisinglevelsofserumferritin.
10DoesIronChelationTherapyImprovetheSurvivalExpectancyofPatientswithMDSIfironoverloadcausesclinicalcompli-cationsthatdecreasethelikelihoodofsurvivalinMDS,ironchelationtherapyshoulddotheopposite.
ThiswasindeedfirstsuggestedbyasmallretrospectiveseriesfromCanada,11thencorroboratedbyalargerstudyfromFrance,12andrecentlyunderscoredbyamatched-pairanalysisfromtheDüsseldorfMDSRegistry.
13Thesestudiesconsistentlyshowthatpatientswithlower-riskMDSwhoreceiveironchelationtherapyfaresignificantlybetterthanthosewhoremainuntreated.
However,onemustbeawareofaproblemthatiscommontoalltheseretrospectivestudies.
Asthedecisiontochelatewasnotrandomized,itisimpossibletoexcludethatpatientsmayhavebeenmorelikelytoreceiveironchelationif,basedonunmeasurablefactors,theirphysiciansconsideredthemtohaveagoodprognosis.
Thispotentialbiascanonlybeavoidedbyaprospectiverandomizedplacebo-controlledtrial.
Suchatrialisabouttostart,with630MDSpatientsat126centers.
CurrentRecommendationsGuidelinesforthemanagementofironoverloadinMDSarecurrentlybasedonalowlevelofevidenceandusuallymakeinferencesfromthemoreestablishedfieldofthalassemiamajor.
Nevertheless,anumberofconsensusstatementsandpracticeguidelineshavebeendevelopedbyvariousgroupstooutlinebestpractice.
14-22Theseguidelinesvarysomewhatintheirrecommen-dationsforinitiatingironchelationtherapyandstrategiesfortheongoingmanagementofironoverload.
23Overall,theyfavorstartingtreatmentifmorethan20bloodtransfusionshavebeengivenandserumferritinlevelsexceed1000–2000ng/ml,recommendingserumferritinlevelsbemaintainedbelow1000ng/ml.
ThereisgeneralagreementthattheMDSpatientsmostlikelytobenefitfromchelationtherapyarethosewhohaveagoodsurvivalexpectancyaccordingtotheWHOclassificationsystemandtheInternationalPrognosticScoringSystem(IPSS).
Besidespreventingorgandamage,ironchelationtherapymayachieveimprovedbonemarrowfunctioninaproportionoftransfusion-dependentMDSpatients.
Thiswasclearlyseeninastudyofintensivetreatmentwithdeferoxamine24butalsoobservedinsomepatients(7%)participatinginarecentclinicaltrialwithdeferasirox.
25However,suchresponsesseemtobeunpredictable.
Mostofthepreviousguidelinesrecommenddeferoxamine(DFO)forironchelation,whilethosepublishedmorerecentlyalsorecommendtheuseofdeferasirox(DFX).
ClinicaltrialswithMDSpatientsshowedthatdeferasiroxreliablyachievesanegativeironbalanceifthedosageisproperlyadaptedtotheintensityofthepatient'stransfusionregimen.
Dosagesof20to30mg/kg/dareusuallyadequate,but40mg/kg/dmayberequiredinheavilytransfusedpatients.
26ItshouldbenotedthatdeferasiroxtreatmentislesswelltoleratedinelderlyMDSpatientswhencomparedwithtypicallyyoungthalassemiapatients.
27Diarrheaisthemostcommonsideeffect,whichcanusuallybemanagedbydosereductionbutsometimesnecessitatesdiscontinuationofthedrug.
Asignificantriseinserumcreatinineoccursinapproximately25%ofMDSpatients,butprogressiveincreasescanbeavoidedwithappropriatedosereductions.
Patientsshouldnotbetreatedwithdeferasiroxiftheyhaveaglom-erularfiltrationrateoflessthan40ml/min.
Withdecreasingserumferritinlevels,elevatedliverenzymesusuallyalsodecrease,suggestingthatsuccessfulremovalofironbydeferasiroxleadstoBesidesdamagetotheliver,heart,andpancreas,otherpotentialconsequencesofironoverloadhaverecentlybeenemphasized,namelyincreasedsusceptibilitytoinfections,acceleratedleukemictransformationandincreasedmorbidityandmortalityrelatedtoallogeneicstemcelltransplantation.
6Whileitisstillspeculativethatiron-relatedoxidativestressaggravatesgenomicinstabilityofbonemarrowcellsinMDSandthuspromotesclonalevolutiontoAML,anunfavourableimpactofironoverloadontransplantationoutcomeiswidelyacknowl-edged.
Allogeneicstemcelltransplantationisassociatedwithdisruptedironrecycling.
Afterintensiveconditioningchemotherapy,redcellprecursorsinthebonemarrowarelackingforawhile.
Therefore,largeamountsofironusuallytakenupbymaturingredcellsnolongerfindarecipient.
Thiscausesrapidsaturationofserumtransferrinandappearanceofnon-transferrin-boundiron.
7Besidescausingoxidativestress,thesurplusironpromotesthegrowthofinfectiousagents.
DoesIronOverloadCompromisetheSurvivalExpectancyofPatientswithMDSIfironoverloadisharmful,itshouldbeassociatedwithadecreasedlikelihoodofsurvival.
Whilethisisclearlythecaseinpatientswiththalassemiamajor,ithasnotbeenprovenbeyonddoubtinpatientswithMDS.
WeknowverywellthatchronictransfusiontherapyinMDSisassociatedwithshortersurvival.
8However,thismayhaveseveralcauses.
Ontheonehand,transfusion-dependentpatientsmaydevelopclinicalcomplicationsofironoverload.
Ontheotherhand,transfusiondependencyindicatesseverebonemarrowdiseasethatmaycausecomplicationsnotrelatedtoironoverload.
Furthermore,transfusiondepen-dencyreflectschronicanemiawhichcanalsobedetrimental.
Onmultivariateanalysis,ithasbeenshownthatevenaftertransfusiondependencyhasbeentakenintoaccount,ironoverloadwithaserumferritinabove1000g/lremainsanindependent403.
TakatokuM,UchiyamaT,OkamotoS,etal.
RetrospectivenationwidesurveyofJapanesepatientswithtransfusion-dependentMDSandaplasticanemiahighlightsthenegativeimpactofironoverloadinmorbidity/mortality.
EuropeanJournalofHaematology.
2007;78:487-494.
04.
MalcovatiL,DellaPortaMG,PascuttoC,etal.
PrognosticfactorsandlifeexpectancyinmyelodysplasticsyndromesclassifiedaccordingtoWHOcriteria:abasisforclinicaldecisionmaking.
JournalofClinicalOncology.
2005;23:7594-7603.
05.
WoodJC,Otto-DuesselM,AguilarM,etal.
CardiacirondeterminescardiacT2*,T2,andT1inthegerbilmodelofcardiomyopathy.
Circulation.
2005;112:535-543.
06.
PullarkatV.
Objectivesofironchelationtherapyinmyelodysplasticsyndromes:morethanmeetstheeyeBlood.
2009;114:5251-5255.
07.
SahlstedtL,EbelingF,vonBonsdorffL,ParkkinenJ,RuutuT.
Non-transferrin-boundironduringallogeneicstemcelltransplantation.
BritishJournalofHaematology.
2001;113:836-838.
08.
MalcovatiL,DellaPortaMG,CazzolaM.
Predictingsurvivalandleukemicevolutioninpatientswithmyelodysplasticsyndrome.
Haematologica.
2006;91:1588-1590.
09.
SanzG,NomdedeuB,SuchE,etal.
Independentimpactofironoverloadandtransfusiondependencyonsurvivalandleukemicevolutioninpatientswithmyelodysplasticsyndrome.
Blood.
2008:ASH(AnnualMeetingAbstracts),112,640.
10.
AlessandrinoEP,DellaPortaMG,BacigalupoA,MalcovatiL,AngelucciE,VanLintMT.
Prognosticimpactofpre-transplantationtransfusionhistoryandsecondaryironoverloadinpatientswithmyelodysplasticsyndromeundergoingallogeneicstemcelltransplantation:aGITMOstudy.
Haematologica.
2010;95:476-484.
11.
LeitchHA,LegerCS,GoodmanTA,etal.
Improvedsurvivalinpatientswithmyelodys-plasticsyndromereceivingironchelationtherapy.
ClinicalLeukemia.
2008;2:205-211.
12.
RoseC,BrechignacS,VassiliefD,etal.
DoesironchelationtherapyimprovesurvivalinregularlytransfusedlowerriskMDspatientsAmulticenterstudybytheGFM.
LeukemiaResearch.
2010:Feb1.
[Epubaheadofprint].
13.
FoxF,KündgenA,NachtkampK,etal.
Matched-pairanalysisof186MDSpatientsreceivinglong-termironchelationtherapyortransfusiontherapyonly.
Blood.
2009:ASH(AnnualMeetingAbstracts),#1747.
14.
AlessandrinoEP,AmadoriS,BarosiG,etal.
Evidence-andconsensus-basedpracticeguidelinesforthetherapyofprimarymyelo-dysplasticsyndromes.
AstatementfromtheItalianSocietyofHematology.
Haematologia.
2002;87:1286-1306.
15.
BowenD,CulliganD,JowittS,etal.
Guidelinesforthediagnosisandtherapyofadultmyelodysplasticsyndromes.
BritishJournalofHaematology.
2003;120:187-200.
16.
GattermannN,PorterJB,LopesLF,SeymourJ.
Consensusstatementonironoverloadinmyelodysplasticsyndromes.
Hematology/OncologyClinicsofNorthAmerica.
2005;19(suppl1):18-25.
17.
ArrizabalagaB,delCanizoC,RemachaAF,etal.
Guíaclínicadequelacióndelpacienteconsíndromemielodisplásico[Clinicalguidetochelationtherapyforpatientswithmyelodys-plasticsyndrome(Spanishguidelines)].
Haematologica.
2008;93:3-10.
18.
SuzukiT,TomonagaM,MiyazakiY,etal.
JapaneseepidemiologicalsurveywithconsensusstatementonJapaneseguidelinesfortreatmentofironoverloadinbonemarrowfailuresyndromes.
InternationalJournalofHematology.
2008;88:30-35.
19.
ValentP,KriegerO,StauderR,etal.
Ironoverloadinmyelodysplasticsyndromes(MDS)–diagnosis,management,andresponsecriteria:aproposaloftheAustrianMDSplatform.
EuropeanJournalofClinicalInvestigation.
2008;38:143-149.
20.
WellsRA,LeberB,BucksteinR,etal.
Ironoverloadinmyelodysplasticsyndromes:aCana-dianconsensusguideline.
LeukemiaResearch.
2008;32:1338-1353.
21.
BennettJM.
MDSFoundation'sWorkingGrouponTransfusionalIronOverload.
Consensusstatementonironoverloadinmyelodysplasticsyndromes.
AmericanJournalofHematology.
2008;83:858-861.
22.
National-Comprehensive-Cancer-Network.
NCCNClinicalPracticeGuidelinesinOncologyv.
1:MyelodysplasticSyndromes.
2010.
Availableat:http://www.
nccn.
org/professionals/physician_gls/pdf/mds.
pdf.
2010.
23.
GattermannN.
Overviewofguidelinesonironchelationtherapyinpatientswithmyelo-dysplasticsyndomesandtransfusionalironoverload.
InternationalJournalofHematology.
2008;88:24-29.
24.
JensenPD,HeickendorffL,PedersenB,etal.
TheeffectofironchelationonhaemopoiesisinMDSpatientswithtransfusionalironoverload.
BritishJournalofHaematology.
1996;94:288-299.
25.
ListA,BaerMR,SteensmaDP,etal.
Two-yearanalysisofefficacyandsafetyofdeferasirox(Exjade)treatmentinmyelodysplasticsyndromepatientsenrolledintheUS03study.
Blood.
2009:ASH(Annualmeetingabstracts),#3829.
26.
PorterJ,GalanelloR,SaglioG,etal.
Relativeresponseofpatientswithmyelodysplasticsyn-dromesandothertransfusion-dependentanemiastodeferasirox(ICL670):a1-yrprospectivestudy.
EuropeanJournalofHaematology.
2008;80:168-176.
27.
GattermannN,FinelliC,DellaPortaM,etal.
Deferasiroxiniron-overloadedpatientswithtransfusion-dependentmyelodysplasticsyn-dromes:Resultsfromthelarge1-yearEPICstudy.
LeukemiaResearch.
2010:inpress.
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KorethJ,AntinJH.
Ironoverloadinhematologicmalignanciesandoutcomeofallogeneichemato-poieticstemcelltransplantation.
Haematologica.
2010;95:364-366.
diminishedirontoxicityintheliver.
However,therehavebeenreportsofpatientswhosufferedrenalimpairment,includingfailure,hepaticimpairment,includingfailure,orgastrointestinalhemorrhageduringtreat-mentwithdeferasirox.
Insomereportedcases,thesereactionswerefatal.
Therefore,arespectiveboxedwarningwasrecentlyplacedonthepackageinsertofdeferasirox.
Thesereactionsweremorefrequentlyobservedinpatientswithadvancedage,highriskMDS,underlyingrenalorhepaticimpairmentorlowplateletcounts(<50*109/L).
Deferasiroxtherapyrequiresclosepatientmonitoring,includinglabora-torytestsofrenalandhepaticfunction.
ConclusionsIronchelationtherapyhasbecomemucheasierwiththeadventoftheoralironchelatordeferasirox.
Toavoidindiscriminateuseofthedrug,currentguidelinesshouldbefollowedwhich,admittedly,arenotbasedonrock-solidevidencebutreflectthecommonsenseofexperiencedphysicianswhotookintoconsideration(1)thetoxicityofironoverload,(2)thelifeexpectancyofMDSpatientswhichinfluencesthelikelihoodofdevelopingiron-relatedcomplications,and(3)potentialsideeffectsofchelationtherapy.
Toputitinanutshell,ironchelationtherapy(ICT)shouldbeusedjudiciously:patientsmostlikelytobenefitfromICTarethosewithagoodprognosiswhoyetrequireregularbloodtransfusions.
OneshouldalsoconsiderICTinpatientswhohavepre-existingcardiacdiseasethatmayrenderthemparticularlyvulnerabletothetoxiceffectsofironoverload.
ThereisalsoastrongrationaleforusingICTinMDSpatientsundergoingallogeneicstemcelltransplantation.
28References:01.
BrittenhamGM,GriffithPM,NienhuisAW,etal.
Efficacyofdeferoxamineinpreventingcomp-licationsofironoverloadinpatientswiththalassemiamajor.
NewEnglandJournalofMedicine.
1994;331:567-573.
02.
GoldbergSL,Mody-PatelN,ChenER.
ClinicalandeconomicconsequencesofmyelodysplasticsyndromesintheUnitedStates:AnanalysisoftheMedicaredatabase.
Blood.
2008:ASH(AnnualMeetingabstracts),112,636.
5NewsFromTheFoundationTheMDSFoundationAnnouncesItsNewHeadquartersinYardville,NJThestaffofTheMDSFoundation(LtoR):NancyMrzljak,JaniceButchko,TraceyIraca,SueHogan,DeborahMurray,AudreyHassan.
TheFoundationismovingforwardwithexcitingplanstoprovideservicesmoreeffectivelyandefficientlyfromitsnewlocation.
Nowonfacebookandtwitter!
TheMDSFoundationisnowonFacebookandTwitter.
Signuptoconnectwithusnow!
Keepuptodateonallthenews,eventsandhappeningswiththeFoundation.
TofindourpageonFacebook,type"TheMDSFoundation"inthesearchboxlocatedinthetoprightcorner.
Onceyouarethere,becomeafantoreceiveupdates.
Theninthetopleftcornerclickthe"more"buttonthen"suggesttofriends"andsendtoallyourfriends.
WhenthePageisupdatedwithcurrentFoundationinformation,anoticeissenttoallthefansnewsfeeds.
ThePagealsoallowsforFanstoleavecommentsforotherstoreadorbeginatopicinaDiscussionForum.
Twitterisafreeservicethatletsyoukeepintouchwithpeoplethroughtheexchangeofquick,frequentanswerstoonesimplequestion.
FollowusonTwitterathttp://twitter.
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Wehopetoseeyouontheweb!
OURSITETOSEE!
www.
mds-foundation.
orgUSPatientLiaison:AudreyHassanPatientliaison@mds-foundation.
orgP.
O.
Box353,Crosswicks,NJ08515Phone:1-800-MDS-0839,outsidetheUSonly:609-298-6746Fax:1-609-298-0590EUPatientLiaison:SophieWintrichEUPatientLiaison@mds-foundation.
orgTheRayneInstitute,DenmarkHillCampus,123ColdharbourLaneLondonSE59NU,UKTel:+442077337558TheMDSFoundationisamultidisciplinary,internationalorganizationdevotedtotheprevention,treatment,andstudyofthemyelodysplasticsyndromes.
Theorganizationisbaseduponthepremisethatinternationalcooperationwillacceleratetheprocessleadingtothecontrolandcureofthesediseases.
IfyouwishtosupporttheworkoftheFoundationinthebattleagainstmyelodysplasticsyndromes,pleaserememberusandconsiderdonatingallyearlong.
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MAKEADONATIONNOW.
UpcomingU.
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MDSPatient&FamilyForumsFriday,November12,2009Boston,MAGuestSpeaker:Dr.
RichardStone,Dana-FarberCancerInstituteFriday,November20,2009Cleveland,OHGuestSpeaker:Dr.
JaroslawMaciejewski,ClevelandClinicFoundationTaussigCancerCenterFriday,December18,2009LakeSuccess,NYGuestSpeaker:Dr.
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UpcomingInternationalMDSPatient&FamilyForumsFriday,20November2009CambridgeGuestSpeaker:Prof.
AlanWarren,AddenbrookesHospitalAbouttheFoundationSearchMDSFoundationForumsTheEditor'sDeskFundingtheFoundationPatientInformationCentersofExcellenceInt'lPatientRegistryInt'lResearchUpdatesContacttheFoundationClinicianResourcesEmploymentLinksGOSOYOUHAVEMDSWHATNOWBillBryant,MDWHATCAUSESMDSBEABONEMARROWDONOR!
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WORLDWIDEPATIENTQUALITY-OF-LIFEFORUMSWORLDWIDEPATIENTSUPPORTGROUPSUSNURSINGADVISORYBOARDSEUNURSINGADVISORYBOARDSBECOMEACENTEROFEXCELLENCEINMDSMORPHOLOGYVIRTUALMICROSCOPYINMDS-AML:THEKEYTOENHANCINGCLASSIFICATIONACMESeriesINTRODUCINGVisitwww.
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ADDITIONALPROGRAMSKeystoIdentifyingPatientsatHighRiskforBoneMarrowFailureSyndromes:IsitMDSMDSPracticeandTreatmentSurveyavailableforUSandEUPhysiciansandNursesPatientQuestionnairesINTERNATIONALWORKINGGROUPSTheseWorkingGroupsarefundedbytheFoundationandfocusonmovingdiseaseknowledgeforwardbydevelopingessentialinformationthroughinnovativeresearch.
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orgVISITOURWEBSITEANDLINKTOOUREDUCATIONALRESOURCECENTER:TheFoundation'sworkissupportedbygrantsfrom:THANKYOUTOOURSPONSORSFORTHEIRSUPPORTTHROUGHEDUCATIONALGRANTSITALIANSPANISHFRENCHJAPANESEGERMANVIRTUALMICROSCOPYINMDS-AML:THEKEYTOENHANCINGCLASSIFICATIONYouareinvitedtobecomeaCenterofExcellenceinMDSMorphology.
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PresentedbytheMDSFoundationandtheEuropeanSchoolofHaematology.
PurchaseMDSAwarenessPinsTheMDSFoundationhasenameledlapelpinsforyoutowearwithprideandtoincreasepublicawarenessaboutMDS.
Thepinsareavailableineitherarectangularorcirculardesignwitha$3.
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7DrugNewsFDAApprovesFive-DayDosingRegimenforDacogen(decitabine)forInjection,OfferingaNewOutpatientDosingOptionforMyelodysplasticSyndromes(MDS)WoodcliffLake,NJ(March11,2010)–EisaiInc.
announcedthattheU.
S.
FoodandDrugAdministration(FDA)approvedafive-daydosingregimenforDacogen(decitabine)forInjectiontotreatpatientswithmyelodysplasticsyndromes(MDS),agroupofbonemarrowdiseasesthataltertheproductionoffunctionalbloodcells.
Thenewdosingregimenisadministeredtopatientsinanoutpatientsettingwithareducedinfusiontimecomparedtotheoriginallyapproveddosingschedule.
Thenewregimenwillbeadministeredatadoseof20mg/m2continuousintravenous(IV)infusionoveronehourrepeateddailyforfivedayspercycle.
Thecycleisrepeatedeveryfourweeks.
ThepreviouslyapprovedDacogenthree-dayregimenisadministeredinanin-patientsettingatadoseof15mg/mcontinuousIVinfusionoverthreehoursrepeatedeveryeighthoursforthreedayspercycleandrepeatedeverysixweeks.
TheapprovalwasgainedbythesubmissiontotheFDAofthreeopen-label,single-arm,multicenterstudiesconductedtoevaluatethesafetyandefficacyofDacogeninMDSpatientswithanyoftheFrench-American-British(FAB)subtypes.
Inonestudy,99patientswithInternationalPrognosticScoringSystem(IPSS)Intermediate-1,Intermediate-2,orhigh-riskprognosticscoresreceivedDacogenbyIVinfusionatadoseof20mg/m2continuousIVinfusionoveronehourrepeateddailyforfivedayspercycle.
Thecyclewasrepeatedeveryfourweeks.
Ifmyelosuppressionwaspresent,subsequenttreatmentcyclesofDacogenweretobedelayeduntiltherewasahematologicrecovery.
TheDacogenstudyresults,basedonInternationalWorkingGroup2000ResponseCriteria,showedthatpatientsexperiencedanoverallresponserate(ORR)of16percent(completeremission[CR]of15percentandapartialresponse[PR]of1percent).
Inaddition,themediantimeto(CR+PR)responsewas162daysandthemediandurationof(CR+PR)responsewas443days.
TheseresultswereconsistentwiththeresultsofthePhaseIIIcontrolledtrial.
ThehighestincidencesofGrade3orGrade4adverseeventsintheDacogenarmwereneutropenia(37%),thrombocytopenia(24%),andanemia(22%).
ThetwoapproveddosingregimensofDacogenofferdoctorsandpatientstheflexibilityofchoosingthemostappropriatedosingregimenforanindividualpatient.
SUBMITTEDFROMUSAANNOUNCEMENTFROMEISAIINC.
CelgeneCorp(CELG:News):HealthCanadaHasApprovedVIDAZA,anImportantTreatmentOptionforAdvancedFormsofaGroupofSeriousBloodCancersSummit,NJ(December10,2009)–Accordingtothecompany,thepivotalclinicaltrial,AZA-001demonstratedthatthetwo-yearsurvivalratealmostdoubledwithVIDAZAtreatmentcomparedtoconventionalcareregimens.
ThisdatapromptedtheJointOncologyDrugReview,theinterprovincialbodythatreviewsandmakeslistingrecommendationsforcancerdrugs,tograntVIDAZApriorityreviewstatus—onlythesecondsuchdesignationtobegrantedthisyear.
ThecompanyalsonotedthatVIDAZAwillbecommerciallyavailableinCanadainJanuary2010.
SUBMITTEDFROMUSAANNOUNCEMENTFROMCELGENECORP.
ThankYoutoOurPharmaceuticalSupportersWewouldliketothankourpharmaceuticalsupportersfortheircommitmenttotheFoundationanditswork.
Theyhavecontributedintheformofeducationalgrants,whichmaintainsnotonlythisnewsletterbutalsothedevelopmentoftheMDShomepageontheWorldWideWeb,theCenterofExcellenceprogram,continuingmedicaleducationprograms,thePatientRegistry,andthedisseminationofpatientinformation.
PatientReferralsMyelodysplasticsyndromescanbedifficulttodiagnoseandtreat.
Itisimportantforbothpatientsandtheirfamiliestoknowthatoptimaltreatmentisavailableandthatqualityoflifecanbeenhanced.
Ifyouwouldlikeinformationabouttreatmentoptions,research,orqualityoflife,wewouldbegladtohelp.
TheFoundationoffersavarietyofpatientservices,includingpreferentialreferralstotheFoundation'sMDSCentersofExcellence.
Wecanalsohelpidentifyphysiciansandcenterstosupportyouifyouaretravellingandneedassistance.
Pleasecontactusat:1-800-MDS-0839OutsidetheUSpleasecall:+442077337558Youcanvisitourwebsiteat:http://www.
mds-foundation.
org.
8TheMDSFoundationSaysNewlyPublishedStudyFindsVidazaProlongsSurvivalinAcuteMyeloidLeukemiaPublicationCouldEncouragePhysicianstoOfferTreatmenttoPatientswiththisDifficultCancerCrosswicks,NJ(February2,2010)–TheMyelodysplasticSyndromes(MDS)FoundationsaysastudypublishedthisweekintheJournalofClinicalOncologyconcludesVIDAZA(azacitidine)"prolongssurvivalandiswelltolerated"inpatientswithacutemyeloidleukemia(AML)—anaggressiveformofleukemiathatinmanycasesprogressesfromMDS.
Thestudylookedatolderpatientswithamedianageof70.
Thesearepatientswhohavehad"notrulyadequatetreatments,"howeverthestudyfoundthathalfofthepatientstreatedwithVIDAZAsurvivedatleasttwoyears,comparedtoonly16%ofpatientswhoreceivedconventionalcare.
Nearly13,000AMLpatientsarediagnosedeachyearintheUnitedStates.
"ThisisencouragingnewsforpatientswithAML,anaggressive,difficulttotreatcancerwheremediansurvivalislessthanoneyear,"saidKathyHeptinstall,OperatingDirectoroftheMyelodysplasticSyndromesFoundation.
"Currently,asdocumentedbyaneditorialinthesamejournal,alargeportionofolderAMLpatientsareofferedonlysupportiveorpalliativecare.
Wewouldhopethatpublicationoftheseencouragingresultswillspreadthewordandhelpchangetheapproachtotreatment.
"ThestudyalsofoundthatVIDAZAhelpedreducetheneedforbloodtransfusionsthatareoftenrequiredinAML.
41%ofpatientsonVIDAZAachievedtransfusionindependence,comparedtoonly18%receivingconventionalcare.
VIDAZAtreatmentalsosignificantlyreducedthenumberofdaysspentinthehospital,andreducedseriousinfections.
ThefindingscomefromasubsetofaninternationalstudyofVIDAZAthatpreviouslydemonstratedimprovedsurvivalinpatientswithhigher-riskMDS.
BothMDSandAMLaremalignantconditionsofcellsinthebonemarrow.
Previously,theNationalCompre-hensiveCancerNetworkrecommendedVIDAZAandDACOGENastreatmentoptionsforAMLpatientsover60yearsold.
TheMDSFoundationSaysNICEDecisionAgainstVidazaDeniesEssentialTreatmentOptionandDenigratestheValueofPatients'LivesVIDAZAistheOnlyLicensedDrugShowninClinicalTrialstoImproveSurvivalCrosswicks,NJ(March4,2010)–TheMyelodysplasticSyndromes(MDS)FoundationtodayissuedastatementhighlycriticalofadecisionnottomaketheonlydrugapprovedbytheEuropeanMedicinesAgency(EMA)forMDSavailabletoUKpatients.
MDSisamalignantbonemarrowdiseasewithamediansurvivaloflessthanoneyearthatcanalsoprogresstoanaggressiveformofleukemiacalledAML.
VIDAZA(azacitidine)iscrucialtothetreatmentofthisdisease,especiallyforMDSpatientsovertheageof65whoarenoteligibleforbonemarrowtransplants—themajorityofMDSpatients.
Despitethiscriticalneed,theNationalInstituteforHealthandClinicalExcellence(NICE)intheUKissuedafinalrulingsayingthatVIDAZAshouldnotbefundedbecauseNICEclaimsitisnotcost-effective.
"ThisnegativeappraisalofVIDAZAfromNICEdeniesMDSandAMLpatientsaccesstotheonlydrugproventoprolongtheirlives.
Itisanaffronttoallpatientswithhaematologicalmalignanciesanddevaluestheirveryexistence,"saidKathyHeptinstall,OperatingDirectoroftheMyelodysplasticSyndromesFoundation.
"Inadditiontoprolonginglife,VIDAZAhasalsobeenshowntoimprovethequalityoflifeforMDSpatients,manyofwhomhavenoothertreatmentoptions.
"SUBMITTEDFROMUSAANNOUNCEMENTSFROMMDSFOUNDATIONSpecifically,theMDSFoundationnotes:VIDAZAistheonlydrugavailableintheUKtosignificantlyextendsurvivalforhigher-riskpatientswithMDS,basedonthelargestinternationalstudyinthisdiseasecategoryVIDAZAdelaysprogressiontoAMLVIDAZAimprovesqualityoflifeformanypatientsbyeliminatingtheneedforfrequentbloodtransfusionsthatcanthemselvesleadtoserioussideeffectsincludingironoverloadVIDAZAisapprovedandreimbursedinnearly30countriesworldwideCostIssues:TheMDSFoundationalsochallengedtheNICEassertionthatVIDAZAisnotcost-effective.
ThefoundationsaysNICEcomparedVIDAZAtolow-costpalliativecareandtransfusionsinsteadoftochemotherapywhichismoreexpensive,althoughlesstolerable.
Insodoing,theMDSFoundationbelievesNICEfailedtoactfairlyinaccordancewithitsownappraisalproceduresandviolatedlastyear'spolicychangespecificallyintendedtoallowgreateraccesstolife-extendingmedicines.
Regardless,thenumberofMDSpatientsrequiringVIDAZAtreatmentissmall,lessthan700peryearintheUK,soVIDAZAwouldnothaveamajorbudgetimpact.
"WehaveseenVIDAZAtransformpatients'livesfromadebilitatingstatetoanactive,normallifewheretheycanonceagainbeacontributingmembertotheirfamiliesandtosociety,"saidDavidHall,ChairmanoftheMDSUKPatientSupportGroupandanMDSpatient.
"WejointheMDSFoundationandagroupofpatientadvocacyorganizationsinexpressingbothangeranddisappointmentintheNICEdecisiontodenypatientsthecaretheysodesperatelyneed.
"TheMDSFoundationandtheMDSPatientSupportGroupwillworkwithbothNICEandthedrug'smanufacturer,Celgene,toappealandultimatelytoattempttoreversethisnegativedecision.
9MDSYoungInvestigatorGrantsProgramYoungInvestigatorGrantsAwardPresentationTheMDSFoundationpresenteditsfifthannualYoungInvestigatorGrantsAwardPresentationheldinconjunctionwiththeAmericanSocietyofHematology51stAnnualMeetingandExpositioninNewOrleans,Louisiana.
TheGrantReviewCommitteeheadedbyStephenNimer,MDofMemorialSloan-KetteringCancerCenterandmemberoftheFoundation'sBoardofDirectors,selectedDr.
AndrewFinch'sgrantsubmissionentitled"TheRoleofp53PathwayinthePathogenesisofShwachmanDiamondSyndrome"andDr.
RamonTiu'ssubmissionentitled"TET2MutationsasMarkerofEpigenomicInstabilityinMDS:TherapeuticImplications.
"Asthisyear'srecipients,eachwillbeawardeda$50,000grantforcontinuedresearch.
TheYoungInvestigatorGrantsprogramwasinitiatedin2004toprovideassistancetooutstandingYoungInvestigatorswhoarecommittedtofurtheringtheresearchintothecausesandtreatmentofMDS.
AndrewJohnFinch,PhD,UniversityofCambridge,UnitedKingdomRamonTiu,MD,ClevelandClinicFoundation,Cleveland,OHSignUpforMDSEssentialsE-NewsTheFoundationhascreatedanelectronicE-Newslettertoprovidehealthcareprofessionalsandpatientsfromaroundtheworldwithtimelyinformationinacost-effectivemanner.
TheMDSEssentialsE-Newsletteristheelectronicversionofourquarterlynewsletter.
Receiveup-to-dateinformationonclinicaltrials,research,andnewsbysimplysubscribingonlineat:www.
mds-foundation.
org1010MeetingHighlightsandAnnouncementsEffectiveTherapeuticDecisionMakinginMDS:ImprovingPatientOutcomesandQualityofLifeErnestN.
MorialConventionCenterNewOrleans,LouisianaDecember4,2009TheMDSFoundationheldits12thconsecutivesatellitesymposiumonFridayprecedingtheAmericanSocietyofHematology'sannualmeeting.
Thissymposium,entitled"EffectiveTherapeuticDecisionMakinginMDS:ImprovingPatientOutcomesandQualityofLife,"waschairedbyDr.
JohnM.
BennettoftheUniversityofRochesterinNewYork.
ThisprogramprovidedparticipantswiththeopportunitytonotonlylearnaboutthemostrecentchangestothescientificknowledgeofMDSbuttomatchtheirclinicalknowledgeofMDSwiththatofapanelofexpertsinMDSdiagnosis,therapy,andqualityoflife.
Accuratediagnosis,stratificationofMDSpatients,treatmentchoices,andassessmentoftherapeuticresults(includingqualityoflifeissues)provideeveryoneinvolvedintreatingMDS,includingthisexpertpanel,withcontinuouschallengestooptimizationofoutcomes.
Theexpertpanelpresentedaseriesof'reallife'casestotheattendeescoupledwithbriefscientificupdatesthatmayaffectthetherapeuticchoicesoftheparticipants.
Verbalinteractionandelectronicdecisionmakingallowedforfullparticipationbytheaudienceandprovidedthemwiththeopportunityforchallengingdiscussionswiththeexpertsandotherparticipantsregardingoptionsintreatmentandthepotentialeffectsonpatientoutcomes.
OnbehalfoftheMDSFoundationandourBoardofDirectors,thankyouforjoiningusforourrecentSatelliteSymposia:THEAMERICANSOCIETYOFHEMATOLOGY51STANNUALMEETING&EXHIBITIONThetopicsandinternationalfacultyforthissymposiumincluded:EvolutioninthePrognosticSystemsinMDS:WhatDoesthatMeaninTermsofDiagnosisandStagingJohnM.
Bennett,MDAnemia–HowDoYouTreatItTheLow-riskPatientatRiskforRapidProgressionMosheMittelman,MDTheFoundationhasparticipatedatASHfortwelveconsecutiveyearsbyhostingitsboothforphysicianattendees.
OurboothiswellstockedwithallofourMDSeducationalresourcepublicationsincludingourCMEaccreditedCDs.
PhysiciansfromeverycorneroftheglobetookadvantageofourtranslatedmaterialsandthosewhotreatpatientswithMDSweresurveyedontheirpracticeandtreatmentpracticeswhichwillprovidecrucialinformationfordevelopmentoffutureeducationalinitiatives.
(Picturedlefttoright)AudreyHassan,NancyMrzljak,SandraKurtin(MDSFNursingAdvisoryBoard),SusanHogan,andErinDemakos(MDSFNursingAdvisoryBoard).
ErnestN.
MorialConventionCenterHigh-riskMDS:TraditionalTreatmentsandAdvancedTherapeuticOptionsLewisR.
Silverman,MDIssuesinTransplant:EarlyversusLateH.
JoachimDeeg,MDWhatisthePatient'sRealityTheViewfromtheOtherSideDavidCella,PhDForacopyoftheDVD-ROMcontainingthevideoandslidepresentationsfromthissymposium,pleasecontacttheMDSFoundationat1-800-MDS-0839orvisitourwebsite,www.
mds-foundation.
org.
11MDSSatelliteSymposiumheldattheOncologyNursingSociety(ONS)35thAnnualCongressSanDiego,CaliforniaMay13,2010Topicsforthesymposiumandfacultyspeakersincluded:AGENDAHowDoWeIntegrateScientificInformationintoOurClinicalPracticeSandraKurtin,RN,MS,AOCN,ANP-CStrategiesforEffectiveManagementofOralMedicationsJeanRidgeway,APN,MSN,NP-C,AOCNToolsforCommunicatingEmergingClinicalInformationtoColleaguesandPatientsErinDemakos,RN,CCRCPROGRAMINFORMATIONThetreatmentparadigmforMyelo-dysplasticSyndromes(MDS)hasshiftedfromsupportivecaretoactivetherapiesoverthelastfiveyears.
Scientificadvanceshaveprovidedrefineddiagnosticcapabilities,riskstratificationandindividualizedtreatmentselection.
Supportivecarestrategiesforcytopeniasandironoverloadremainachallenge.
ThemajorityofpatientswithMDSareelderlywiththemedianagebeing70.
Integratingrecentscientificdevelopmentsandconsideringtheuniqueneedsoftheolderadultpresentsauniquechallengefortheoncologynurse.
AcollaborativeapproachtomanagingtheelderlyadultwithMDSiscriticaltooptimaltreatmentoutcomes.
MDSMISSIONFORNURSINGEDUCATIONThissymposiumprovidedanupdateonthemostrecentscientificadvancesforthediagnosis,management,supportivecare,andqualityoflifeforpatientswithMDS,includingselectedabstractsfromtheAmericanSocietyofHematology(ASH)annualmeetinginDecember,2009.
StrategiesforoptimizingoralandinjectabletherapiesforMDS,includingreimbursementandfinancialassistanceprogramswerediscussed.
Toolsforcommunicatingclinicalinformationtocolleaguesandpatients,includingpatienteducationtoolswerepresented.
LEARNINGOBJECTIVESIntegrateclinicalandtranslationalresearchintothecollaborativemanagementofpatientswithMDS.
IdentifyresourcesandstrategiesformanagementoforalandinjectabletherapiesforMDS,includingreimbursement.
Discussmethodsforcollaboratingwithcolleaguesthroughcasepresentationsanddocumentation.
Utilizeavailablepatienteducationtoolstoassistpatientsandfamilieswithself-managementofMDS.
FACULTYErinDemakos,RN,CCRCAdministrativeDirectorMyelodysplasticDiseaseCenterandTheInternationalMyeloproliferativeDiseaseClinicalConsortiumMountSinaiMedicalCenterNewYork,NewYorkSandyKurtin,RN,MS,AOCN,ANP-CHematology/OncologyNursePractitionerandClinicalAssistantProfessorofMedicineandClinicalAssistantProfessorofNursingArizonaCancerCenter,UniversityofArizonaTucson,ArizonaJeanRidgeway,APN,MSN,NP-C,AOCNAdultHematologicMalignancyNursePractitionerAdjunctFacultyUniversityofIllinoisCollegeofNursingUniversityofChicagoMedicalCenterChicago,IllinoisInterpretingandIntegratingScienceintotheCollaborativeManagementofMDSLUNCHEONSYMPOSIUMMay13,201012:00–1:30pmSanDiegoMarriottHotel&MarinaMarriottHallSalons4,5&6Lunchwillbeserved.
Thefirst300peoplewillbeaccommodated.
SANDIEGO,CALIFORNIAVISITTHEMDSFOUNDATIONBOOTH#535YOUAREINVITEDMDSFoundationPatientLiaisonsPLEASECONTACT:USPatientLiaisonAudreyHassanahassan@mds-foundation.
org4573SouthBroadStreet,Suite150Yardville,NJ08620Tel:1-800-MDS-0839OutsidetheUSonly:609-298-1035Fax:609-298-0590EUPatientLiaisonSophieWintrichswintrich@mds-foundation.
orgTheRayneInstituteDenmarkHillCampus123ColdharbourLaneLondonSE59NU,UKTel/Fax:+4420773375581213PRACTICEANDTREATMENTSURVEYTheMyelodysplasticSyndromesFoundationwouldliketoknowmoreaboutyourapproachtothediagnosisandtreatmentofpatientswithMDS.
TheMDSFoundationrecognizesthatdataonmanyaspectsofMDSworldwideissketchyornonexistent.
WhileindividualinvestigatorshavedevelopeddatabasestotrackMDSwithintheirindividualsitesorworkinggroups,thatinformationisnotlocatedwithinoneeasilyaccessibledatabase.
Toassistinthedevelopmentofusefulinformation,theFoundationhasrecentlyinitiatedthefirstPatientRegistryanddatafromtheFoundation'sCentersofExcellencearecurrentlybeingentered.
Sinceitwillbesometimebeforethesedataarematureandusable,theFoundationhasattemptedtodesignasurveythatwehopewillassistindescribingsomeoftheissuesrelatedtoMDSworldwideaswellasthetreatmentsbeingutilizedinthisdisease.
ApilotofthissurveyhasalreadybeencompletedwithsomeselectedCentersofExcellence.
Whileweknowthatthisinformationis,inmostinstances,basedonsubjectivecriteria,itcanassistinidentifyingeducationalandresearchopportunitiesintheneartermanduntilmoreaccuratedataareavailable.
Pleaseassistusbycompletingabriefonlinesurvey.
Gotowww.
mds-foundation.
organdclickonPhysicianorNursingPractice&TreatmentSurvey(SurveysareavailableonlineinSpanish,Italian,German,andDutch)SUBMITTEDFROMUSAMDSPRACTICEANDTREATMENTSURVEYWhatisMDSThemyelodysplasticsyndromes(MDS)areafamilyofsimilardiseasesthatsharemanycommoncharacteristicsandaffecttensofthousandsofindividualsworldwide.
Thisnumberreflectsonlythosepatientswhoareproperlydiagnosed.
Thesedisordersareaprimarydiseaseofthebonemarrowandshareseveralcharacteristicsoftheacuteleukemias;however,MDSfarexceedsanyoftheleukemiasinprevalence.
Weareseeingmanymorecaseseachyearandthatnumberwillincreasegreatlyoverthenextdecadeasthebabyboomersageanddiagnosisimproves.
Theprimarycauseofthesedisordersisunknown;however,thechemotherapyregimensthatareutilizedtoprovidecurativetherapytopatientswithcertainmalignancies(lymphomas,testicularcancer,andbreastcancer)canleadtothedevelopmentofsecondaryMDS.
Untilrecentlytreatmentconsistedonlyofsupportivecareincludingbloodtrans-fusions(redbloodcellsorplatelets),andtreatmentwithgrowthfactorslikeerythropoietin(EPO)withG-CSForGM-CSF.
TherearenowthreedrugsapprovedforthetreatmentofMDS:Vidaza(azacitidine),Dacogen(decitabine),andRevlimid(lenalidomide).
Atpresent,therearetwoFDA-approveddrugsforthetreatmentoftransfusion-dependentironoverload:Exjade(deferasirox)andDesferal(deferoxamine).
Noneofthesearecurative.
HowtoHelp:Bonemarrowtransplantationisoftentheonlychanceofsurvival.
Nearly70%ofthepatientsarewithoutamatch.
Theneedisespeciallycriticalinracialandethnicminoritygroups.
Asanot-for-profitorganization,theMDSFoundationdependsentirelyonpublicfundingintheformofindividualgifts,donationsfromindividualandcorporateentities,andmembershipfeestofurtherourwork.
TolearnhowtosupporttheMDSFoundation,gototheFoundation'swebsiteatwww.
mds-foundation.
org.
LearnMoreAboutMDS:JointheJourneytoHopeforMDS14PatientServicesAirTransportationOptionsforPatientsAirtransportationresourcesmaybeavailableforpatientsconsideringtraveltooneoftheparticipatingsitesthatarepartoftheNIHRareDiseasesClinicalResearchNetwork(RDCRN).
AngelFlight'svolunteerpilotsprovideflightsinsingle-engine,four-sixseatgeneralaviationaircrafttopatientsatnocharge.
Tobeeligible,patientsmustbemedicallystable,ambulatory,andabletosituprightinanaircraftseatduringflight.
AngelFlightsareforpatientsinfinancialneedandwhohavetheirmedicalstatuscertifiedbytheirdoctors.
Anescortmayaccompanythepatient,andchildrenmaybeaccompaniedbybothparents.
Flightdistancesarelimitedto1,000miles.
Weightrestrictionsapply,andluggageislimitedto50pounds.
Safetyisaprimaryconcern.
Pilotswillnotflyinpoorweather.
Patientsneedtobeflexible,haveabackupplanorbewillingtorescheduletheirappointments.
IfyouareinterestedinfindingoutifAngelFlightmeetsyourairtransportationneedstoparticipateinaclinicalresearchstudy,contactMaritaEddyat301-451-9646ormeddy@mail.
nih.
gov.
Forpatientswholivefartherthan1,000miles,otherresourcesmaybeavailablethroughMercyMedicalAirlift.
MercyMedicalAirlift(MMA),anon-profitorganizationcelebrating25yearsofmedicalairtransportationexperience,managesprogramsandservicesavailabletopatientswithbothcommonandrarediseases.
IfyouareflyingtoanyoftheRDCRNfacilitiesorgoingtoastudyattheNIHClinicalCenterinBethesda,Maryland,contactMarita.
Forpatientswhoarelookingfortravelhelptootherlocations,calltheNationalPatientTravelCenterat800-296-1217orcheckwww.
patienttravel.
org.
UNITEDAIRLINESCHARITYMILESIwanttohelpMercyMedicalAirliftprovidefreeairtransportationtopatientsinfinancialneed.
Pleaseprocessagiftof________________DividendMilesfrommyUnitedAirlinesaccount.
(Pleasefillinnumberofmiles–donationsmustbein1,000mileincrements)Name:PrintFullNameEmailAddress:UnitedMileagePlusAccountNumber:United.
ComPassword:PhoneNumber:Address:City:State:ZipCode:Signature:Date:Remarks:Pleasemailto:MaritaEddy,AngelFlight-MMANIHOfficeofRareDiseasesResearch6100ExecutiveBlvd.
MSC7518Bethesda,Maryland2089225,000FrequentFlyerMilesequals1round-tripticket15PatientForumsandSupportGroupsPatientSupportGroupInitiativeTheMDSFoundationhasdevelopedastrategyforsettinguppatientgroupsnationwideandassistanceisnowavailabletoorganizesupportgroupsforMDSpatients.
Atthistime,wewouldliketoenlistthehelpofourpatientmembersinfacilitatingthesemember-rungroups.
WouldyoubeinterestedinjoiningwithafewotherpeopletohelpstartaneededsupportgroupforMDSMonetaryassistanceisnowavailabletohelpyoudevelopaself-helpgroup.
Thepurposeofthisgroupistoexchangeinformationandresources,toprovidecomfortandsupporttopatientsandcaregivers,andtoexplorethechallengesoflivingwithmyelodysplasticsyndromes.
Studiesandotherliteratureshowthatpatientsfacingchronicorterminalillnesses,aswellastheirfamiliesandfriends,benefitinnumerouswaysfromparticipatinginpatientsupportgroups.
Thesegroupsnotonlyprovideasourceforobtainingcurrentinformationonthedisease,treatmentoptionsandresearch,theyalsoofferasupportiveenvironmentinwhichtoexpressfearsandconcernsandshareexperienceswithotherscopingwithsimilarconditions.
Infact,patientswhoparticipateregularlyinsupportgroupsreportreductionsinstress,depression,andevenpain.
AnymemberoftheFoundation,patients,friends,familymembers,andcaregiversareinvitedtojoinwithustomovethisprojectforward.
Dr.
KavitaRaj,Guy'sandSt.
Thomas'Hospital,LondonProfessorMufti,King'sCollegeHospital,LondonsharesthelatestadvancesinMDSresearch.
LondonPatientandFamilyForumLondon,UKSeptember25,2009Dr.
SallyKillick,RoyalBournemouthHospitalBournemouthPatientandFamilyForumBournemouth,UKNovember4,200916Dr.
StevenAllenfromNorthShoreUniversityHospitalduringhisMDSpresentation.
MDSpatientpreparestoparticipateinafreeserumferritinscreeningtocheckforironoverload.
JayshreeShah,NursePractitioneratHackensackUniversity.
HospitalandmemberoftheMDSFNursingAdvisoryBoard[picturedcenternearmicrophone]moderatesthequality-of-lifesessionwithpatientsandcaregivers.
LongIslandPatientandFamilyForumRoslyn,NewYorkDecember18,2009PennProgramforStressManagementStressedWanttolearnhowtomanageyoursymptomsofstressmoreeffectivelyThePennProgramforStressManagementisamindfulness-basedstressmanagementprogramthatusespowerfulmeditation-basedtechniquesastheprimarytoolforlong-termstressmanagement.
Mindfulnessistaughtasascientific,systematicapproachinwhichparticipantslearntorestattentioninthemoment-to-momentawarenessoftheirexperienceofphysicalsensations,thoughtsandfeelings.
Partici-pantsoftheprogramthoroughlyexploremindfulnessanditsusesinreducingthesymptomsofstressthatareexperiencedinthebodyandmind.
7classlocationsinthePhiladelphiaregion.
Tolearnmoreaboutthisprogramgotowww.
pennhealth.
com/stressorcontact:PENNProgramforStressManagement3930ChestnutStreet6thfloorPhiladelphia,PA19104Phone:215-615-2774Fax:215-615-2729E-mail:stress.
management@uphs.
upenn.
eduwww.
pennhealth.
com/stress17Roslyn,NewYork(December2009)Detroit,Michigan(July2010)Gainesville,FL(September2010)Durham,NC(November2010)CANADAToronto,Ontario(October2009)EUROPEEdinburgh,UK(March2005)Paris,France(January2006)Bournemouth,UK(Feb2006,Nov2009)London,UK(February2006,September2008)Hamburg,Germany(April2006)Leeds,UK(May2006,April2009)Marseille,France(May2006)Vienna,Austria(July2006)Prague,CzechRepublic(September2006)Stockholm,Sweden(September2006)Freiburg,Germany(February2007)London,UK(May2007)Florence,Italy(May2007)Dubrovnik,Croatia(September2007)Sinaia,Romania(October2007)Toulouse,France(May2008)Copenhagen,Denmark(June2008)Lund,Sweden(September2008)Ontario,Canada(September2009)TelAviv,Israel(January2009)Frankfurt,Germany(March2009)Stockholm,Sweden(April2009)Patras,Greece(May2009)Berlin,Germany(June2009)Cambridge,UK(November2009)Glasgow,UK(April2010)SOUTHAMERICABuenosAires,Argentina(November2008)OngoingmeetingsintheUSandEuropeaddressingQoLissuesforMDSpatients.
TheFoundationservesasaneffectiveeducationalconduitforinformationregardingthemostupdatedtreatmentoptions,clinicalstudies,referralstoCentersofExcellence,andotherinformationconcerningtheMyelodysplasticSyndromes.
Patientforumshavebeenheldtodatein:UNITEDSTATESNewYorkCity,NewYork(October2004,December2006)Tampa,Florida(November2004)PaloAlto,California(Dec2004,Oct2010)Scottsdale,Arizona(February2005)Chicago,Illinois(March2005,July2009)Philadelphia,Pennsylvania(December2005,February2006,April2007,February2008,July2009,October2010)Pittsburgh,Pennsylvania(February2006,October2009)OakBrook,Illinois(January2007)Dallas,Texas(January2007)Seattle,Washington(March2007,August2009)Covina,California(March2007)Rochester,Minnesota(June2007)Baltimore,Maryland(Sept2007,June2009)Rochester,NewYork(April2008)LosAngeles,California(May2008,August2009)Scottsdale,Arizona(May2008)SanAntonio,Texas(August2008,September2009,August2010)Atlanta,Georgia(November2008)Columbia,SouthCarolina(March2009)Bethesda,Maryland(August2009)Birmingham,Alabama(August2009)Hackensack,NewJersey(September2009)Boston,Massachusetts(November2009)EstablishedMDSPatientSupportGroupsUNITEDSTATESChicago,IllinoisSupportGroupmeetsonthefourthTuesdayofthemonthfrom1:30–3:00pmatNorthwestCommunityHospital'sCancerServicedepartment(lowerlevel),800W.
CentralRoad,ArlingtonHeights,Illinois.
ContactKimJensenatkjensen@nch.
orgorcall847-618-6914.
PugetSound,WashingtonSupportGroupmeetsonthethirdTuesdayofthemonthat6:30pmatthePugetSoundBloodCenter,921TerryAvenue,Seattle,Washington.
ContactSteveKessleratsteve@Qamonline.
comorcall800-877-0168.
SanFranciscoBayAreaSupportGroupmeetsonthesecondSundayofthemonthat2pmattheParkBlvd.
PresbyterianChurch,4101ParkBlvd.
,Oakland,California.
Contact800-MDS-0839formoreinformation.
StanfordCancerCenterMDSPatient&FamilySupportGroupmeetsthe3rdMondayofthemonth,6:30–8:00pmattheStanfordCancerCenter,875BlakeWilburDr.
,PaloAlto,2ndFloorConferenceRoomCC2105.
GroupLeader:LennFechter,RN,BSN650-725-0744.
CANADAToronto,OntarioSupportGroupContactWilliamPearsonatwilliam.
pearson@sympatico.
caorcall905-561-699forinformationonupcomingmeetings.
JAPANJapaneseSupportGroupEmail:mdsrenraku@yahoo.
co.
jpformoreinformationWebsite(onlyinJapanese):http://www.
geocities.
jp/mdsrenrakuEUROPE(CountrysideGroups)France:AssociationConnatreetCombattrelesMyélodysplasiesUnitedKingdom:UKMDSPatientForumCzechRepublic:CzechRepublicMDSForumSpreadingtheWordWorldwide–Quality-of-LifeandPatientEducationForums18GIVEAGIFTOFHOPE.
.
.
JourneytoHopeBraceletLovin'KissesBeadingPromotingMDSAwarenessSandyMadrigal,Designer/CreatorP.
O.
Box2541Davenport,Iowa52809-2541Visitwww.
lovinkissesbeading.
com.
ThishandcraftedbraceletwascreatedtodrawattentiontoMyelodysplasticSyn-dromes.
Mydesignisdedicatedtothelovingmemoriesofmymother,Betty,andmysister,Linda.
TheywerediagnosedwithMDSjusteightweeksapart.
Bothfoughtthediseasebravelyandwithgreatdignity.
NowI'mdoingwhatIcantocontinuetheirfight.
Eachbraceletisonly$20.
00(plusS&H).
Visitmywebsitefordetails.
AportionoftheproceedsfromthesaleofmybraceletswillbedonatedtotheMDSFoundationtohelpfurthertheirresearchandcreateawareness.
Women'sJourneytoHopeBraceletMen'sJourneytoHopeBraceletAbouttheFoundationWhoAreWeTheMyelodysplasticSyndromesFoundation,Inc.
,wasestablishedin1994byaninternationalgroupofphysiciansandresearcherstoprovideeducationaboutMDStophysiciansandpatients,supportforMDSresearch,patientsupport,andadvocacy.
Duringthepastdecade,wehaveindependentlysolicitedfundingforteninternationalsymposiathathavebeenattendedbyover7,000individuals—physiciansandpatients.
Thesesymposiaareheldbiannuallyandhavegreatlyimprovedourknowledgeofthesedisordersaswecontinuetoprovidephysiciansworldwidewiththemostup-to-dateinformationonresearchinMDS.
The10thInternationalSymposiumwasheldinPatras,GreeceMay6–9,2009.
AttheThirdInternationalMDSmeeting,attendedbyepidemiologists,pediatricians(yes,thisdoesoccurinchildren),pathologists,hematologists,oncologists,andbonemarrowtransplantationexperts,asurveyindicatedaverystronginterestin,andagreatneedfor,developingapermanentworkinggroupofscientistsandpatientadvocates.
Upuntilthattime,noformalworkinggroupwasdevotedtothesesyndromes.
TheMDSFoundationwasborn.
WhatDoestheFoundationDoTheFoundationworkstomaintainaninternationalinformationnetworktosharenewresearchandnewtreatmentoptionsasrapidlyaspossible,toprovideinformationandeducationalsupportforbothphysiciansandpatients,and,ultimately,toprovidefundingandoversightforinternationalstudiesofMDS.
CurrentlytheFoundationsuppliespatients,physicians,andotherinterestedpartieswithinformationintheformofaquarterlynewsletter,theMDSNews,andMDSEssentials,oure-newsletter.
TheFoundation'swebsiteincludespatientandphysicianinformation.
Ourwebaddressishttp://www.
mds-foundation.
org.
TheCentersofExcellenceProgramdesignatesinstitutionsthatmeetthehigheststandardsfordiagnosis,treatment,andpatientcare.
TheseCentersformthereferralbaseforpatientsseekingfirstorsecondopinionsand/oradditionaltreatmentoptionsfromexpertsinMDS.
TheFoundationprovidespatientswithapriorityreferraltoanyCenterofExcellence.
Patientadvocacygroupsarebeingformedworldwide,andinformationisavailablethatassistsMDSpatientsandtheirlovedonesinunderstandingthesediseasesandthetreatmentoptionsthatareavailable.
HowCanYouHelpFundingfortheFoundationcomesfrompharmaceuticalcompanies,Foundationmemberships,memorials,anddonationsfromprivateindividuals.
Whilewehavecomealongwayinthe15+yearssincetheFoundationwasestablishedwehavealongwaytogo.
FundingisthebaseforrealizingtheFoundation'sresearchandeducationgoals.
TheMDSFoundationisapubliclysupportednot-for-profitorganization,exemptfromfederalincometaxundersection501(c)(3)oftheIRScode.
HowCanWeHelpYouPleasedonothesitatetocontacttheFoundationifyouhaveanyquestions.
MDSInternationalHeadquarters:USPatientLiaison4573SouthBroadStreet,Suite150Yardville,NJ08620WithintheUS:1-800-MDS-0839OutsidetheUS:609-298-1035Fax:609-298-0590USPatientLiaison@mds-foundation.
orgEUOffice:EUPatientLiaison,TheRayneInstitute123ColdharbourLaneDenmarkHillCampusLondonSE59NU,UKTel/Fax:+442077337558EUPatientLiaison@mds-foundation.
org19ahematologistatJeffersonRegionalMedicalCentertogetanotheropinionbecausehewasn'tsure.
MyStory.
.
.
JacquiKonopBuckleyWhoimaginestheirlifeattheageof27,newlymarried,andthinkingaboutbabies—toallofasuddenbethinkingaboutcancerandchemo-therapyCertainlynotI.
.
.
butithappened,andithappenedquickly.
Hereareafewdetailsaboutmyself…DiagnosedonJune3,2009.
FoundoutonJune22,2009thatIwas6weekspregnant.
IhadtoterminatemypregnancyonJune30,2009at7weeks.
Mybonemarrowwas84%packedwithleukemiccells(firstbonemarrowcouldaspiratenothing).
Sinceithadnowhereelsetogo,itbegantogrowfrommyleftleg.
After13weeksofRevlimiditwasdownit7.
9%.
Another8weeksanditwas0!
InsurancecompanydeniedmyRevlimidandmycasehadtogototheMedicalReviewBoardforauthorization.
July23,2009IbeganRevlimid25mgadaynobreaks.
Iwasonitfor13weeksstraight,tookaweekoff,andthenwentbackonitfor12weeks.
Hadtostopworkingfor5months.
IamacounseloratWesternPsychiatricInstitute&Clinic(IabsolutelyLOVEmyjob!
!
!
).
Ihavebeenhospitalizedseveraltimesduetosevere,debilitatingpain.
Wason180mgofOxyContinand75mgofOxycodoneperdayalongwithvariousothermedications.
RemissionFebruary8,2010!
Rightnow.
.
.
thisismylife.
Iinviteyoutotakeapersonallookintomylife,mydiagnosis,myencouragementsanddis-couragements,andthepeoplewhosupportmemost!
InApril2009,Iwasacceptedintoaresearchstudyforweightlossatalocalhospital.
Asurgeoninsertedaballoonintomystomach(tokeepmefull,thereforemakingweightlosseasier).
Beforetheballoonwasinserted,Ihadafullbloodworkup/healthscreen/etc.
Everythinglookedfine.
Ihadtheballooninforthreeweeks.
Astheyweredoingroutinecheckupsaftertheballoonwasinserted,theynoticedthatmyWBC(whitebloodcount)wasstartingtoelevate.
Theywatcheditclosely,andonApril27ththeyhadtotaketheballoonoutbecausemycountwas32,000(thenormalrangeisbetween4,000and10,000).
TheycontinuedtomonitormybloodcountforanotherweekandthenreferredmetomyPCP.
Iwasnothavinganysymptomsorproblems!
IwenttoseemyPCPandhetookbloodtotestmyWBCagain,andthistimeitwasdownto28,000.
Iwaspositivethattheseelevatedcountswerefromtheballoon(andIwasreallyangrywithmyselfforevengettingthatprocedure).
Thedoctorsaidhedidn'tthinkthattherewasanyrelationbetweentheballoonandtheWBC(Istillthoughthewaswrong!
).
Istillwasn'thavinganysymptoms(otherthanjointpain—whichIthoughtwasfromtheWii!
).
Threedayslater,hecheckedagain,andmyWBChadgoneupto38,000,soweknewtherewasdefinitelyaproblem.
HereferredmetoMDSPatientsShareTheirStories.
.
.
Ourwedding–October4,2008Richcomfortingmewhilegettingmybonemarrowbiopsy.
SUBMITTEDFROMUSATheFoundationwouldliketoinvitepatientsandtheirfamiliestosharetheirstorieswithothersintheMDScommunity.
LivingwithMDSposeschallenges,andmanyofyouhavestoriesthatprovidehopetoothers.
PleasecontacttheFoundation,ifyouwouldlikeustopublishyourstory.
SUBMITTEDFROMPITTSBURGH,PENNSYLVANIAIstillwasn'thavinganysymptoms(otherthanjointpain—whichIthoughtwasfromtheWii!
).
3dayslater,hecheckedagain,andmyWBChadgoneupto38,000,soweknewtherewasdefinitelyaproblem.
IwenttothehematologistonJune3,2009,andhelookedatthevariousbloodworkresultsandthebloodsmearandsaidthatitwasleukemia.
Mymomhadgonetotheappointmentwithmeandwestillhaddoubts.
Moretestsneededtobedone—Ishouldhavesymptoms,something.
HenoticedthatinpreviousbloodworkIhadimmaturecellswhichsignalcancer.
HesaidthatitwaseitherAcuteMyelogenousLeukemia(AML)orChronicMyelogenousLeukemia(CML).
HetoldusthatifIweregoingtohaveone,IshouldpraythatitbetheCMLbecauseitiseasiertotreat,fewersymptoms,etc.
IwentbackonJune4,2009forabonemarrowbiopsy(Iwaspetrified).
Theygavemesomesedationmedicine(Iwasstillawake),butitwasn'ttoobad.
Ithurt,butnotterribly.
WhenIstartedtocry,thenursewasveryniceandheldmyhand.
20fornumeroustests,abonemarrowbiopsy,andmanyotherinvestigations.
TheseconfirmedthatIhadMDS,buttherewassomedisagreementaboutexactlywhattype—adiscussionwhichcontinues.
TherewashoweveragreementthatatthatstageIdidnotneedtreatmentandjustneededtohaveregularmonitoring.
IwasreferredtoKing'sCollegeHospital,acentreofexcellenceforMDSinsouth-eastLondon,underthecareofProfessorGhulamMufti.
Bylate2008Iwaslesswell,feelingtiredandthelaboratorymeasuresofbloodcellswereallbeginningtofall.
AsaphysicianIwasawareofthepossibletreatmentoptionsandsomeoftheirimplications,thoughmyspecialisationisingastroenterologynothaematology.
Themonitoringbecamemorefrequentandasmyconditiongraduallydeclined,IstartedGCSFanderythropoietin(EPO)byself-injection.
Thoughtheseimprovedthebloodcounts,Idevelopedworseningbonepain,whichcanbecausedbyGCSF,sothatwasstoppedandthenEPOwasstoppedtoo.
Istartedbloodtransfusions,usuallythreeunitseverythreeweeks,withoccasionalplatelettransfusionswhenrequired.
Despitethismybloodcountscontinuedtodeclineatasteadyrate.
ThiswaswhenIwasstartedon5-aza-citidine(Vidaza;AZA).
Ihadasevendayweekofsubcutaneousinjectionseverymonthforsixmonths,followedbymaintenancetreatmentwithafivedayweekAnEnglishmanAmongsttheAcronymsRodneyTaylorDeputyChairmanMDSUKPatientSupportGroupEachcountryisdifferentandsoareitsinstitutionsanditspeople.
Buthealthanddiseasearemuchthesamewhereveryougo.
Thediseaseprocessshowsupassymptomsorwhatisdescribedasanillnessbythepatientwhowillpresenteventuallytoadoctor,beinvestigated,diagnosedandtreated.
Oratleastthatisthewayitshouldbe.
Somediseaseprocessescandevelopinsidiouslywithaverygradualonsetofsymptomsuntiltheyareunavoidableandcanbeignorednomore.
Thefirstindicationthatanythingunusualwasgoingonformewasabloodcountdonein1994whichshowedthatIhadamildneutropenia.
Iamahospitaldoctorandwasparticipatingasa'healthyvolunteer'inacolleague'sresearchproject.
Theneutropeniawasstillpresentthreeyearslaterandsubsequently,butnothingelsewasamissandIfeltwellwithnoproblemswithinfection,bruising,breathlessness,tirednessoranythingelse.
Iwasabusydoctor.
InMarch2006mywifeandIwentonholidaytoLibya.
Itwasasplendidexperiencevisitingthehistoricsites,travellingwidelythroughthedesert,eatingahealthyNorthAfricandiet—andhavingnoalcohol.
Onourreturnitseemedagoodtimetocheckmycholesterollevel,whichwasfine,butthehaematologistpickedupsignsofMDSintheblood.
Redcells,whitecellsandplateletswereallreducedabit.
ThisledtomyreferraltoHammersmithHospitalinwestLondon,anearbypostgraduateteachinghospitalandcentreofexpertiseinhaematology.
Havinghadexcellenthealthinthepast,andfeelingwell,itwasanoddexperiencebeingthepatientunderinvestigation—Iwasusuallyontheothersideoftheconsultingroom.
IhadtheusualarmfulofbloodtakenMom&IwhileIwashospitalizedinJuly2009MDSPatientRodneyTalyorSUBMITTEDFROMUSASUBMITTEDFROMLONDON,UNITEDKINGDOMThedoctoralsoexplainedeverythingthathewasdoing,whichmadeitalittleeasier.
Thedoctorconfirmedthatinthemarrowhesawleukemia(leukemiaclumpstogethermakingitagooeywhiteformwhenthemarrowshouldbered),whichmadeitdifficulttogetwhatheneededforthetest.
Theywereunabletoaspirateanythingatall,evenaftertryingthreetimes.
MyhusbandRichandmyparentswentbackwithmeonTuesday(June9,2009)todiscusstheresults,courseoftreatment,etc.
MyspecifictypeofcancerendedupcomingbackasaDysplasticLeukemia(MyeloproliferativeDx/MyelodysplasticDx)whichisveryrare,andtherehasn'tbeenmuchresearchdoneonit.
AdeletionofthePhiladelphiachromosomehasmadeitevenmoredifficult(5q-).
Itwassomethingtohearanoncologistwith20+yearsofexperience(whoeventreatedmymom!
)throwhishandsupandsay"I'veneverseenthis.
.
.
"andadmitthathehasnoideahowtoevenbegintotreatmycancer.
IwasthensenttoHillmanCancerCenterwhereIhavethemostamazingdoctor,Dr.
Agha,whowillhelpmefightthisbattle.
Hewasconfidentandfriendly,andsaidthathewoulddowhateverhehadtodotohelpus(evenpromisingmyparentsthatifthetimecomeswhereIwouldneedabonemarrowtransplant,hewouldfindmeamatch!
).
IfeltcomfortableatHillmanandwasn'tjusta"patient"—Iwasaperson.
Readmyjournal,sharemyexperiences,beashopefulasIam!
www.
caringbridge.
org/visit/jacquibuckley21ofinjectionseachmonth.
Thischangedthecourseofmyconditionandbegantorestoremywellbeinginamostdramaticway.
Ifeltnormalagainandcoulddoafullday'swork.
TheonlyissuenowisthattheredcelltransfusionsresultedinironoverloadsoInowneedvenesectionstoreducemyferritinlevels.
IcantoleratethesewithoutdifficultybecausemybonemarrowisnowrestoredtoeffectivefunctionbyAZA.
IntheUnitedKingdom,AZA(IshallcallitAZAaswearenowonfirstnameterms)isalicenseddrugthatisnotyetrecommendedforuseintheNationalHealthService(NHS).
ThebodyresponsibleforthatiscalledtheNationalInstituteforHealthandClinicalExcellence(NICE—the'H'issilent!
).
Thatisaso-called'arm'slengthbody'fromthegovernmentthatisfundedbytheDepartmentofHealth(DoH).
NICEwasestablishedbecausetheGovernment,likeallgovernmentsworldwide,hadfiniteresourcesforhealth,generatedbytaxationofthepeople,andneededtocontrolthecostsofhealthcare.
NICE'sroleistoproduceclinicalguidelinesandtoevaluatenewhealthcaretechnologies,whichincludesdrugsaswellasinterventionsanddiagnostics.
InthesamewaythattheNHSisreputedlytheenvyoftheworld,NICEiswidelyrespectedanditsproceduresadoptedinmanyotherplaces.
InevaluatingadrugNICElooksatbothitsclinicalefficacyand,moreworryingly,itscost-effectiveness,askingfirst'doesitwork'andthen'canitbeafforded'.
NoteveryonereadingthiswillknowhowtheNHSworks,eventhoughitisreputedlytheenvyoftheworldasahealthcaresystem.
Althoughitisnominallya'national'healthservice,itisrundifferentlybydifferentbodiesinEngland,whereNICEoperates;Wales;Scotland,andNorthernIreland,soitisreallyfourhealthservicesworkingtosimilarprinciplesacrosstheUK.
ItwasestablishedafterWorldWarIIin1948toprovidehealthcareforallthatisprovidedfreeofchargeatthepointofdelivery.
ItisfundedbythepopulationthroughNationalInsurance(NI)andtaxation.
Ithasbeenaresoundingsuccessinprovidinghighqualityhealthcaretoall,irrespectiveofwealth,background,andinfluence,respondingsolelytoclinicalneed.
HavingspentmostofmyworkingcareerintheNHS,andnowasapatientunderitscare,IhavenohesitationinsayingthatthisisthebestpossiblemodelofhealthcarethatIhaveknownanywhereintheworld.
theonlyspecifictreatmentforpatientswithhigherriskMDS.
Weplantosortthatout.
BythetimeyoureadthisweshallhavehadaGeneralElectionintheUKonThursday6thMay.
IcannotpredicttheoutcomebutitmaywellbethatwehaveahungParliament,thatisonewithnooverallmajority.
Thiswillmakelegislationdifficultandtheremaybethepossibilityofacoalitiongovernmentforawhile.
Whateverhappens,thereisnodoubtthathealthissuesaregoingtobeveryhighonthepoliticalagenda,thattherearelikelytobecutsinrealtermstoNHSfundingforsomeyearstocomeintheaftermathoftherecession,thatpersonalcontributionstoNHShealthcarethroughtaxandNIwillincrease,andthatanageingpopulationwithrisinghealthcareneedsandcostsisgoingtoputincreasingdemandsontheNHS.
Theseareinevitabletruthsthroughoutthewesternworldandwillremainatthetopofthepoliticalandfinancialagendasforgenerationstocome.
Thescience,thetechnologyandthewherewithaltoprovidetopclasshealthcarearethere,butwehavetodecidewhetherwecanafforditandhowtoprioritiseit.
Goodqualityoflifeseemstobefundamentalbutwehavetocountthecost.
AZAhasthepowertoturnlivesarounddramaticallyifitisavailabletothosewhocanbenefitfromit.
AZAisnowavailablethroughoutmostoftherestofEuropeandNorthAmerica,butnotyetinEngland.
Sothe700orsopatientswhomightbenefitfromiteachyeararecurrentlybeingdeniedthis.
.
.
Theacronymsabound—NHS,NICE,DoH,AZA,MDS,AML,CMML,GCSF,EPOandmore—butwhatweintheMDSUKPatientSupportGroupaimtodoistoinjectsomecommonsenseintothediscussiontoensurethatthisenormouslyvaluabletreatmentisavailabletoallwhoneeditinthiscountry,asitisinsomanypartsoftheworld.
Thescience,thetechnologyandthewherewithaltoprovidetopclasshealthcarearethere,butwehavetodecidewhetherwecanafforditandhowtoprioritiseit.
Thatis,untilwecometoNICE.
IhaveagreatdealoftimeforNICE'sclinicalguidelinesandmuchofwhatitdoes,butitisslowtorespondandtherearetimeswhenitsdecisionsarenotapparentlyeven-handed.
AZAhasbeenthroughthisprocessveryslowlyforvariousadmini-strativereasonsandNICEfinallyannounceditsdecisionon4thMarch2010tosaythatitdidnotrecommendAZAforuseinintermediate-2andhighriskMDS,norinAMLorCMML.
ThiswasanenormoussourceofdisappointmenttothemembersofMDSUKPatientSupportGroup.
Weimmediatelyissuedapressreleaseandgotwidespreadmediacoverage.
MuchofthisisavailableontheMDSFoundationwebsiteaswellasourown(http://www.
mdspatientsupport.
org.
uk).
WehaveappealedagainstNICE'sdecisionandputoutanotherpressreleasetocoincidewiththisappeal.
Detailsofthatarealsoonourwebsite,alongwiththemediacoverage.
WehavenowlearnedthatourappealhasbeengrantedandwehavebeeninvitedtopresentourcasetoNICE,backedbyfulllegalsupport.
AZAisnowavailablethroughoutmostoftherestofEuropeandNorthAmerica,butnotyetinEngland.
Sothe700orsopatientswhomightbenefitfromiteachyeararecurrentlybeingdeniedthis,22"PintforaPint"BloodDriveInHonorofSheldon"Butch"Ginsberg–200+PintRecipientRockBottomRestaurant&BreweryLocationsMonthofApril,2010SHELDON'SSTORY:LIVINGWITHMDSSheldon"Butch"GinsbergisanattorneyandanactivememberoftheDenvercommunity.
AsformerChairmanoftheCherryCreekValleyWaterandSanitationDistrict,formerChapterChairmanoftheMetroMarchofDimes,formerChairmanoftheLegalServicesCommitteefortheDenverBarAssociation,andaVolunteerAttorneyoftheYearrecipient,Sheldonhasgivenhoursandhoursofhistimeforpeopleinneed.
ButlatelySheldonhasgonefromhelpingotherstorelyingonthegoodnessofothersforhissurvival.
WhatSheldonneedsdoesnotcomeintheformofcash,gifts,orservices.
Itissomethingonlyonepersoncangivetoanother—blood—andSheldonhasneededalotofblood(approximately200pintsoverthepastthreeyears).
Infact,Sheldonsurvivestodaybecauseahostofanonymousblooddonors.
Fouryearsago,SheldonwasdiagnosedwithChronicLymphocyticLeukemia(CLL).
Thegoodnewswasthat,afterreceivingchemotherapy,hewentintoremission;however,heremainedhighlyanemic.
Aftermultipletests,SheldonwasdiagnosedwithMyelodysplasticSyndromes,orMDS.
MDSisabonemarrowdisorderthataffectstheabilityofone'sownbodytoproducethebloodcellsnecessaryforsustaininglife.
ThereisnocureforMDS.
Formanypatientssufferingfromthisdisorder,regularbloodtransfusionsaretheonlymeanstoreplenishwhatthebodycannotproduce.
ForSheldon,theyhavebecomehislifeline.
Nearlythreeyearsago,herequiredtransfusionseverysixweeks.
Asthediseasehasprogressed,thetransfusionsarenowrequiredweekly.
Onaweeklybasis,SheldonspendsthedaysittingatKaiserPermanente'sinfusioncenterindowntownDenver.
Eachtransfusiontakesapproximatelyfivehours.
Thetwopintsofpackedredcellshereceiveswilllasthimapproximatelyeightdays.
Thenitisbackinforthenexttransfusion;itisabalancingactthatneverends.
Multiplebloodtransfusionscauseironoverload,asometimesfatalsideeffect.
Constantmonitoringofkidneyfunction,heartfunction,liverfunction,andahostofmedicationsmustbetakentotrytooffsettheimpacttotherestofthebody.
WithoutSheldon'swife,Gloria,whohandlesallofSheldon'sdoctorandnurseappointmentsandmedications,treatmentwouldbenearlyimpossibletomanage.
Evenwithweeklybloodtransfusions,Sheldon'sbloodcountsarefarfromnormal.
Thetransfusionsonlybringuphislevelstoafractionofwhatnormalshouldlooklike.
ForthetypeofMDSSheldonhas,twolevelsarecloselywatched:hemoglobinandhematocrit.
Hemoglobincarriesoxygenfromthelungstothebody'stissuesandreturnscarbondioxidefromthetissuestothelungs.
Anormalrangereadingforhemoglobinvalueforamiddle-agedmaleis12.
4–14.
9gm/dl.
Afteratransfusion,Sheldon's"high"normalis9,wellbelowthenormalforpeoplehisage.
HematocritistheotherfactorSheldon'sdoctorsarewatching.
Hematocritistheproportion,byvolume,ofthebloodthatconsistsofredbloodcells.
Foranadultmalethenormalrangeis42–54%.
AhighreadingforSheldonis25–27%.
So,onagoodday,Sheldon'shematocritisroughlyhalfthenormalforanadultmale.
Thinkaboutit…200+pintsofblood,goingtooneperson.
ThatiswhySheldon'sfamilyissogratefulforallofthepeoplewhoselflesslydonateblood.
Itisthosedonorswhoarekeepinghimalive.
PatientTributesSheldonandGloriaGinsberg"PintforPint"BloodDriveAsathankyou,andtoreplenishthebloodsupplyinDenver,Sheldon'sfamily–inconjunctionwithRockBottomRestaurant&Brewery–hosteda"PintforaPint"replenishmentdriveduringthemonthofApril,2010.
Everyonewhodonatedapintofbloodreceivedacertif-icateforafreepintofbeerfromanyoftheparticipating36RockBottomRestaurant&Brewerylocationsaroundthecountry.
ForthosethatcannotdonatebloodthefamilyisaskingfordonationstobemadeinhonorofSheldontotheMDSFoundation.
JOINFacebookpage"BloodDonorsareHEROES"at:http://www.
facebook.
com/pages/Blood-Donors-are-HEROES/332217363830ref=nfFormoreinformationonthisblooddrivepleasecontact:JillRoblyer[jill.
roblyer@comcast.
net].
23NutritionalHealthTheBestCatchoftheDay:EN'sGuidetoEco-friendly,HealthyandSafeFishThere'satidalwaveofscientificevidencethateatingfishregularlyisahealthyhabitworthadapting.
Fishislowinsaturatedfatsandisthemainsourceoftheomega-3fattyacids,eicosapentaenoicacid(EPA)anddocosahexaenoicacid(DHA).
Theseomega-3fattyacidshavemanyhealthbenefits,includingloweringtrigylceridesandbloodpressure,slowingthebuildupofplaqueinthearteries,tampingdowninflammation,andreducingtheriskofdeath,heartattack,abnormalheartrhythmsandstrokeinpeoplewithheartdisease.
NowondertheAmericanHeartAssociationsuggeststhatyoueatfishtwiceaweek.
Andsomeresearchfindingsindicatethattheomega-3fattyacidsfoundinfishmayhelpreducejointpain,thesymptomsofdepression,andprotectagainstAlzheimer'sdisease.
Stretchingwaybackintime,eatingfishhasbeenanimportantpartofhumanhealth—somescientistsbelievethatourearlyancestorsrelieduponfishasalargepartoftheirdiet,whichmayhavesupportedbraingrowth.
"Seafoodhasalwaysbeenapopularfoodchoice—whetherinwealthynationswhereit'sconsideredanalternativetobeef,porkorchicken,orinpoorernationswhereit'softenthemostavailableandaffordableproteinsource.
Morerecently,researchershavepublicizedthespecificroleoffattyacidsfoundinfishinbrainhealth,neurologicalhealthandcardiovascularhealth,andthathasmadeseafoodmorepopularthaneverbefore,"explainsBrianHalweil,Ph.
D.
,seniorresearcherattheWorldwatchInstituteinWashington,D.
C.
Fishhasbecomesopopularthattheworld'sfishfarmersandfishingfleetsharvested132.
5milliontonsofseafoodin2003(thelatestyeardataisavailable),almostseventimestheharvestof1950.
DangerousWatersUnfortunately,thefishhealthstorygetsabitmorecomplicated.
Today'sheadlineshighlightmercurycontaminationinfishandthedwindlingsupplyoftheworld'sfishpopulations,promptingpeopletowonderwhethereatingfishregularlyissuchahealthyendeavorafterall.
"Theworld'smajorfisherieshavebeentaxedfordecades.
Soconcernoverthesustainabilityofourfishsupplyisn'tnew.
It'sjustthatthedemandsplacedontheoceansaregreaterthanever.
Thetimingisdoublybadbecauseclimatechange,coastalpollutionandotherchallengesmaketheoceanslessresilientandlessproductive,"stressesHalweil.
TheWorldwatchInstitutereportsthatroughlytwothirdsoftheworld'smajorstockshavebeenfishedatorbeyondtheircapacity.
Another10percenthavebeenharvestedsoheavilythatfishpopulationswilltakeyearstorecover.
Concernsarealsomountingoverenvironmentalcontaminantsshowingupinmanyfish.
"Amongthemajorwaterpollutantsthatshowupinfishandposeathreattoourhealth,ifeatenregularly,ismercury,primarilyfromatmosphericfalloutfromcoal-firedpowerplants,"saysHalweil,whonotesthatotherindustrialpollutants,suchaspolychlorinatedbiphenyls(PCBs),cancontaminatefishaswell.
Totopitoff,manymodernfishingpractices,suchasbottomtrawling,promotefurtherdangerstothewaterecosystemandoceanlife.
EN'sFishGuide—HealthierforYou,HealthierforthePlanetTOPFISHDOS:Ourtopfishpicksareecofriendly,agoodsourceofomega-3fattyacids,andlowinmercury.
1.
ArcticChar2.
Barramundi,U.
S.
farmed3.
Catfish,U.
S.
4.
Clams,farmed5.
Cod,Pacific6.
Crab,Dungeness7.
Mussels8.
Oysters,farmed9.
Pollock,Alaskawild10.
Salmon,Alaskawild11.
Sardines,Pacific,U.
S.
12.
Scallops,Bay,farmed13.
Shrimp,Pink,Oregon14.
StripedBass,farmed15.
Tilapia,U.
S.
farmed16.
Trout,Rainbow,U.
S.
farmedTOPFISHDON'TS:Thetopfishtoavoidareguiltyofeitherhigherlevelsofenvironmentalcontaminantsand/oratleastoneseriousenvironmentalproblemsuchasoverfishingorfishingtechniquesthatby-catchothersealifelikeseaturtlesandbirds.
1.
ChileanSeaBass2.
Cod,Atlantic3.
Crab,King4.
Flounder,Sole,Atlantic5.
Grouper6.
Halibut,Atlantic7.
Lobster,spiny,Caribbean8.
Mahimahi,imported9.
OrangeRoughy10.
Rockfish,Pacific(trawled)11.
Salmon,Atlantic,farmed12.
Sharks13.
Shrimp,importedfarmedorwild14.
Swordfish,imported15.
Tilefish(GulfofMexico/SouthAtlantic)16.
Tuna,bigeye/yellowfin(imported)17.
Tuna,bluefin18.
Yellowtail,farmedAustraliaorJapanREPRINTEDFROMENVIRONMENTALNUTRITIONSource:EnvironmentalDefenseFund,SeawatchNote:EN'slistdoesnotrepresentallfishinthesecategories.
AdditionalrecommendationsforfishselectionscanbeviewedatEnvironmentalDefenseFund.
org.
Source:EnvironmentalDefenseFund,Seawatch24andoxidativestresscausedbyfreeradicaldamageareinstrumentalinthedeclineofbrainfunction.
"Bothoxidativestressandinflammationacttodestroymembranesandkillcellssothatthebrainfunctionslesseffectively.
Asyouage,youarelessabletodealwithoxidativestressandinflammation.
Youcanseeanexampleofthiswhenyoulookinthemirrorandseewrinkles—thisisasignoffreeradicaldamagefromthesun,"saysJamesJoseph,Ph.
D.
,whoheadstheNeuroscienceLaboratoryattheJeanMayerUSDAHumanNutritionResearchCenteronAgingatTuftsUniversityinBoston.
Josephisinternationallyrecognizedasaleaderintheworldofnutritionandbrainfunctionresearch.
Slow,smolderinginflammationischaracteristicofallneurodegenerativeconditions.
Accordingtoa2006articlepublishedintheAmericanJournalofClinicalNutrition,theactivationofmicroglia(tissuemacrophagesinthecentralnervoussystem)inresponsetoinjury,illness,agingorothercausesbeginsacascadeofeventsknownasaninflammatoryprocess.
Eventually,ongoinginflammationinthebraindestroysenoughneuronstobringaboutthetelltalesignsofAD.
Otherpro-inflammatoryfactors,includingastrocytes(star-shapedcellsinthecentralnervoussystem)andtumornecrosisfactoralpha(aproteinthatregulatesimmunecells)havealsobeenlinkedtothedevelop-mentofAD.
Theeffectofoxidativestressonthebrainisanothercriticalareacatchingtheeyeofresearchers.
Studieshaveindicatedthatoxidativedamagetolipids,proteins,DNAandRNAoccursinmultiplebrainregionsinlate-stageAD.
Inaddition,ADpatientstendtohavelowerantioxidantstatus.
Antioxidantsappeartoprovideadefensemechanismagainstoxidationtoprotectbrainfunction.
CoolingDownInflammationandOxidativeStress"Ifyoucanturndownthesesystemsofinflammationandoxidativestress,you'rebetteroff.
NavigatingYourWaythroughtheFishMarket.
Thegoodnewsisthatmanyvarietiesoffishareharvestedwitheco-friendlypractices,arenotendangered,andhavelowlevelsofmercurycontamination—makingthemawonderfulsourceofomega-3fattyacidsinyourdiet.
Halweiloffersthemostimportanttipforfindingthebestfishchoices,"Eatlowonthefoodchain.
It'sthebig,long-livedspeciesliketuna,swordfish,Chileanseabassandsharksthataremostendangeredandcarrythegreatestburdenofmercuryandotherpollutants.
Theyarepopularandtheyreproducemoreslowlythansmallerspeciesloweronthefoodchain,likeshellfish,sardines,anchoviesandfarm-raisedfishlikecarp,catfishandtilapia.
"Tilapia,oneofthemostpopularfishinAmerica,containslowerlevelsofomega-3fattyacidscomparedwithexcellentomega-3sourceslikesalmon,butitcanstillmakeaworthwhilecontributiontoyouromega-3intakegoals.
Whenyou'resurveyingthechoicesattheseafoodcounterinthesupermarket,itcanbedifficulttodeterminewhichfisharesafestforyouandtheenvironment.
Someofthebestfoodchoicesmaynotalwaysseemlogicalatfirstglance.
Forexample,farmedcatfishshowsuponEN'sTopFishDos,butfarmedsalmonisonEN'sTopFishDon'ts.
ThereasonSomefisharefarmedundereco-friendlyconditionsthatreduceexposuretocontaminants.
Atlanticsalmonfarmsareusuallyfarmedinlarge-scale,denselystockednetpensthatpollutesurroundingwaterswithwasteandchemicals.
TakealongEN'sFishGuideonyournextshoppingordiningtrip.
OrganizationslikeWorldwatchInstitute(worldwatch.
org),EnvironmentalDefenseFund(edf.
org),andMontereyBayAquarium'sSeafoodWatch(montereybayaquarium.
org)havealsocreatedhandyseafoodpocketguidesthatyoucancarrywithyou.
TheMarineStewardshipCouncil,whichcertifiessomeseafoodas"sustainable,"hasapproveduseofitslabelfor18fisheriesworldwide,includingNorthSeaherringandAustralianmackerel.
Over370productsinalmost30nationsnowcarrythecouncil's"FishForever"logo.
Doyourbesttoprotectyourhealth,andthehealthoffuturefishsupplies,bybeingchoosywhenitcomestobuyingfish.
–SharonPalmer,R.
D.
ReprintedfromEnvironmentalNutritionCopyright2010BelvoirMediaGroup,LLC.
EnvironmentalNutritionispublishedmonthly(12issues)byBelvoirMediaGroup,LLC.
,800ConnecticutAvenue,Box5656,Norwalk,CT06856-5656.
800-829-5384.
http://www.
environmentalnutrition.
com.
FoodforThought:SmartNutritionTipstoProtecttheAgingBrainWhat'syourbiggestfearwhenyouconsideryourgoldenyearsAccordingtosurveys,thesecondmostcitedfearisthelossofmentalfunction(secondonlytothethreatofcancer).
It'sarealconcern—anestimated8millionpeopleintheU.
S.
willsufferfromAlzheimer'sdisease(AD)bytheyear2030.
Aneurodegenerativediseaseisadisordercausedbythedeteriorationofneurons.
AD—anirreversible,progressivebraindiseasethatslowlyerodesmemoryandthinkingskills—isthemostcommoncauseofdementiaamongolderpeople.
ThehallmarksofADarechangesinthebrainthatincludeneurofibrillarytanglesintheentorhinalcortex,amyloidplaques,andthelossofconnectionsbetweenneuronsthatleadtowidespreaddamageinthebraintissue.
Thecurrenttreatmentsforthisdevastatingdiseasehaveproventobeinadequateatbest.
It'sonlylogicalthatscientistsalsoareexploringthepowerofnutritiontoprotectthebrainfromneurodegenerativedisease.
Afterall,we'veknownforyearsthatcertainnutrients,suchasomega-3fattyacids,areessentialfornormalhumanbrainfunction.
ThisisyourBrainonInflammationandOxidativeStressInrecentyears,growingscientificevidenceindicatesthatbothinflammation25Everymajordiseasehasthesetwocomponentsanditincreasesasweage,"saysJoseph.
HowcanyoucooldowntheinflammationandoxidativestressprocessesthatwreakhavocinthebrainJosephreportsthatdietandlifestylechoicescanlendabighand.
Numerousstudieshaveindicatedthatindividualsconsumingadiethighinfruitsandvegetablesshowfewerage-relateddiseaseslikeAD.
Joseph'sresearchteamhaspublisheddozensofstudiesbasedonwide-rangingresearchonnutritionandbrainfunctionthatshowthatfoodshighinantioxidantscandecreasetheenhancedvulnerabilitytooxidativestressandinflammationthatcomeswithaging.
Joseph'sresearchkickedoffwiththediscoverythatratsfedhigh-antioxidantdietsdidnotexperiencetheage-relatedcognitivelossesseeninratsfedastandarddiet.
Later,hewasabletoshowreversalofcognitivefunctionallossamongratsfedhigh-antioxidantdietscontainingspinach,strawberryorblueberryextracts(withtheblueberry-fedgroupfaroutperformingtheothergroups).
Theblueberrycompoundscrossedtheblood-brainbarrierandlocalizedintheratbraintissues,andthecombinedantioxidantpotencyofcompoundsintheblueberryextractappearedtoreduceinflammationinthebrain.
JosephwentontoinvestigatetheeffectsoffeedingblueberryextracttomicethatcarryageneticmutationforbrainplaquecommonlyseeninAD.
Theblueberry-fedmiceperformedaswellasthehealthycontrolmice,andperformedmuchbetterthanthebrain-plaquedmicethatwerefedastandarddiet.
Mostrecently,JosephreportedintheJournalofNutritionin2009thathisresearch,togetherwithcollaborativefindings,supportedthetheorythatdietarysupplementationwithhigh-antioxidantfruitorvegetableextracts,suchasblueberries,strawberries,walnutsandConcordgrapes,candecreaseoxidativestressandimprovecognitioninhumanswithmildcognitiveimpairment.
SmartFoodsfortheBrainYoucanpowerupeverydayonanumberoffoodslinkedwithbrainpreservation—here'stheshortlist.
Antioxidant-richplantfoods.
"High-antioxidantfoodssuchasberries,nutsandjuicescontainpolyphenolsthatarealsofoundinredwine,darkchocolateandlotsofotherfoods.
Theyacttoblockthestresssignalstothebrainandreduceoxidativestressandinflammation,"saysJoseph,whostressestheimportanceofeatingavarietyofplantfoodsinarainbowofcolors—yellow/orange,red,green,blue/purple—everyday.
Fruits,vegetables,nuts,driedfruits,grains,spices,herbs,coffee,tea,cocoaandredwinearerichsourcesofpolyphenolantioxidants.
Omega-3FattyAcids.
Agrowingbodyofresearchlinksthebrain'sprincipalomega-3fattyacid,docosahexaenoicacid(DHA),withmentalfunction.
DatafromseveralanimalstudiessupportsthetheorythatDHA,foundincoldwaterfishandfishoil,maybeaneffectivetreatmentforADbecauseofanti-amyloid,antioxidantandneuroprotectantmechanisms.
Inaddition,plantsourcesofomega-3fattyacids,suchaswalnuts,havebeenlinkedwithreversingage-relatedcognitivedeficitsinrats.
Curcumin.
IndiaboastsoneofthelowestratesofADintheworld.
AndresearchersfromtheUniversityofCalifornia,LosAngelesarelinkingcurcumin—theprincipalcompoundinthepopularIndianspice,turmeric—withprotectionagainstAD.
Curcuminappearstoslowtheformationof,andpossiblyevendestroy,theaccumulatedplaquedepositsthatareattherootofAD.
Tryincludingthiszestyspicemoreofteninyourfavoritedishes.
TheMediterraneanDiet.
YoucanaddlowerriskofADtothelonglistofhealthbenefitsthatcomealongwiththeMediterraneandietpattern.
ScientistsfromColumbiaUniversityreportedthathigheradherencetotheMediterraneandietwasassociatedwithlowerriskforAD—possiblyduetoreductionininflammationandanantioxidanteffect—ina2007issueoftheArchivesofNeurology.
"TheMediterraneandietcontainsgoodfatlikeoliveoilandnutsandleafygreenvegetables.
Andit'showtheycookfoodsthatareimportant;foodsaregrilled,notdeep-fried,"saysJoseph.
Whiletheresearchexploringhowfoodsandnutrientsmayprotecttheagingbrainisstillinitsyouth,itisclearlypointinginthedirectionofincludingsmarteatingstrategiesinyourdieteveryweekthatarehealth-protectiveinanumberofways.
—SharonPalmer,R.
D.
ReprintedfromEnvironmentalNutritionCopyright2010BelvoirMediaGroup,LLC.
EnvironmentalNutritionispublishedmonthly(12issues)byBelvoirMediaGroup,LLC.
,800ConnecticutAvenue,Box5656,Norwalk,CT06856-5656.
800-829-5384.
http://www.
environmentalnutrition.
com.
EN'sExpertTipsforProtectingYourBrainthroughLifestyleBasedonhisextensiveresearchinnutritionandbrainhealth,JamesJoseph,Ph.
D.
sharesthreekeytipsforpreservingyourbrainpowerthroughlifestyle.
1.
EatRightThatmeanspoweruponplentyofantioxidant-richfruitsandvegetables,aswellasmorefish,wholegrainsandhealthyfatslikeoliveoilandnutsinyourdiet.
2.
SmartExerciseIncludecardiovascularformsofexercisesuchaswalking,joggingorbiking,aswellasstrengthtraining.
3.
WorkyourBrainYourbrainneedsexercisetostayyoung,too.
Stayactive,maintainsocialcontacts,workyourbrainwithpuzzlesandtrysomethingnewtokeepyourbrainfromgettingcomplacent.
26TheInformedPatient:WheretheGermsLurk—ConcernOverSwineFluGrows,PromptingaHardLookattheHygieneHotSpotsDuringtheDayLauraLandroTheylurkonthekitchensponge,yourcomputerkeyboardandthedirtylaundry.
Flushthetoiletandtheybecomeairborne.
Strangersleavethembehindonairplanes,gaspumps,shoppingcarts,coffeeshopcountersandelevatorbuttons.
Yourdesktop,officemicrowavehandles,andtheexercisebikeatthegymarecoveredwiththem.
Don'teventhinkaboutthetoysatday-carecentersorthekids'playgroundequipment.
Germs—themicroscopicbacteria,viruses,fungiandprotozoathatcancausedisease—clingtothemostcommonsurfacesandthenhitcharideonourhands.
Asswinefluspreadsfrompersontopersonaroundtheworld,itismostoftenbeingtransmittedbycoughingorsneezing,butitcanalsoinfectpeoplewhotouchsomethingwithfluvirusonitandthentouchtheirmouthornose,theCentersforDiseaseControlandPreventionwarns.
Andlikeanunwelcomehouseguest,afluviruscanhangaroundfordays.
Nowondergermophobes—includingme—areonhighalert,viewingeverysurfaceasapotentiallylethalpetridish.
We'reusingourelbowstopushelevatorbuttons,forgoingthehandshakeandsocialkissforthefistbump,andfanaticallydisinfectingeverythinginsight.
Salesofalcohol-basedhandsanitizerswereupnearly17%asofthefirstweekofSeptembercomparedtothesameperiodlastyear,accordingtoChicago-basedresearchfirmInformationResources.
Andmarketersaretakingfulladvantageofourparanoia,introducinganti-bacterialdishwasher-safekeyboards,machine-washableleathershoes,germ-resistantpaperfilefoldersandevenhands-freecommunionwaferdispensersforchurches.
ButhowvulnerablearewetotheseaofgermsswirlingaroundusOurimmunesystemprotectsusfrommostofthem,andinsomespotsthatharborgerms,likehouseholddrains,theriskoftransferislow.
Expertssaythere'snoreasontopanic—eventhoughtheremaybegoodreasonstobegrossedout,sincethespreadofgermsisoftenlinkedtopoorbathroomhygieneandbacteriafromhumanwaste.
"Wetakeinhumongousamountsofliveorganismseveryday,andweareallroutinelycoveredinfecalorganisms,"saysMichaelBell,associatedirectorforinfectioncontrolattheCentersforDiseaseControlandPrevention'sDivisionofHealthcareQualityPromotion.
"It'satestamenttoourbody'sowndefenses—iftheyroutinelymadeusill,noneofuswouldhaveachance.
"Eventhescariestbugscanusuallybevanquishedthroughold-fashionedhandwashing.
"Regardlessofwhatyoutouch,makesureyoucleanyourhandsonaregularbasissoyouhaveabetterchanceofnotdeliveringbacteriaintoyourbodythroughyourmouth,noseandeyesoracutonyourskin,"Dr.
Bellsays.
Headvisesthoroughandfrequenthandcleaning—whichmaybeneeded10timesormoredailydependingonyouractivities—withsoaporalcohol-basedhandsanitizer.
Cleaninganddisinfectingthingslikedesksanddoorknobscanplayaroleinprotectingus,hesays,but"focusingononesurfacemissesthepoint,becausenosurfaceisnotgermy.
"(TheCDC.
govWebsiteoffersinformationonkeepinggermsatbayinthehome,howtowashyourhandscorrectly,andtheimportanceoffluvaccinesandotherimmunizationsinpreventingdisease.
)Also,notallgermsareharmful;weneedfriendlybacteriathatliveonourskintohelpfightoffbadbugs,andbacteriainourmouthandguthelpdigestourfoodandpreventillnessanddisease.
Still,Iwantedtoknowwhereinmyhome,officeandwiderworldIshouldmostforcefullybrandishmydisinfectantwipesandhand-sanitizer.
Mycallstoexpertsturnedupsomesurprisingculprits:thepublictoiletseatsI'dalwaysbeenwarnedaboutarelikelycleanerthanthedesksinmyworkplace.
Mykitchenspongeandcuttingboardharborthebiggestdangers,asdoplaceslikeelevatorbuttons,communalcoffeecarafesandgymequipment,thataretouchedbymanyhandsandarerarelycleaned.
"Wearesharingmoresurfacesthaneverbeforeinhistory,spendingmoretimeindoors,travellingonbiggerplanesandcruiseshipsandworkinginbiggerofficecomplexes,"saysCharlesGerba,amicrobiologistattheUniversityofArizona'sDepartmentofSoil,WaterandEnvironmentalScience.
"Thebiggestrisksareinareasofhighcontact—likethehundredsofpeoplewhohavetouchedthatescalatorrailbeforeyoudid.
"Oneofthescariestgermincubatorsmaybetheoffice.
Yourco-workereatingatthenextcubicleisn'tjustannoyingyouwiththesmelloffriedonions—he'sleavingbehindparticlesoffoodthatcanbebreedinggroundforbacteria.
Addinthemicrobestransferredfromworkers'handstokeyboards,phonesandthecomputermouse,andtheaverageofficedeskmayharbor400timesmoregermsthantheaveragetoiletseat,sinceofficedesksandsurfacesmayberarelycleaned,whilebathroomstendtobedisinfectedregularly,Dr.
Gerbasays.
Aftertestingsurfacesandobjectsin113officesinfivecities,theArizonaresearchersfoundthatwomen'sofficeshadmorethantwicethebacteriaoftheirmalecounterparts.
Makeupcases,phonesandpurseshadthehighestnumberofbacteria;formenitwaswallets,hand-heldelectronicdevicesandphones.
Women'sofficeshadhighernumbersofmoldandyeast,mostlyfromfoodkeptindrawers.
ButthesuperbugMRSA,isolatedin6%ofoffices,wasfoundmoreofteninmen'sofficesonthephone,computermouse,desktopandthebottomofdeskdrawers.
REPRINTEDFROMWALLSTREETJOURNALREPRINTEDFROMWALLSTREETJOURNALPersonalHealth27FREE.
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26.
ThestudiesarefundedbymakersofdisinfectantsincludingProcter&GambleandClorox,whoseproductswerealsousedtotesttheeffectivenessofcleaningandcompareregularcleaningregimenstodisinfectingwithsubstanceslikebleach.
Dr.
Gerbasaysmoreresearchisneededonthelinkbetweensurfacegermsanddisease,sinceit'simpossibletosaywhowillgetsick.
"Somepeoplewillnevergetillnomatterwhattheydoordon'tdo,andotherswillgetillalmosteverytime,"henotes.
Athome,thekitchenmaybethegermiestroom.
About50%to80%offood-borneillnesseshappeninthehome,wheremicro-organismscanbespreadfromrawmeatandvegetablesonchoppingboards,utensilsandcounters,andthenspreadonhands.
TheculpritsaredangerousbacteriasuchasE.
coli,salmonellaandcampylobacter.
Theycausefood-borneillnessesthatstrike76millionpeopleeachyear,sending300,000ofthemtothehospitalandkilling5,000.
Oneproblemishaphazardcleaning;astudybytheU.
K.
-basedHygieneCouncilfoundthatin12%ofcases,surfacesthatlookedcleaninhomeswereheavilycontaminated.
Spongesandcleaningclothscanbeswarmingwithbacteriafrompreviouswipe-ups,sotobeonthesafeside,it'sbesttousepapertowels,disposableclothsorreusableonesthathavebeendecontaminatedanddried,thegroupadvises.
TheCDCadvisesmicrowavingspongesfor30secondsorputtingtheminthedishwashereveryotherdayorsodependingonhowoftenyouusethem.
Inthelaundryroom,youraverageloadofwashcontainsmorethancoffeestains.
TheHygieneCouncilalsowarnsitcanbepackedwithbacteriasuchasE.
colifromclothing,towelsandlinens.
Washingincoldwaterdoesn'tkillthegerms;ifyouhavetowashatlowertemperatures,addalaundrydisinfectant.
Washyourhandsafterloadingthewashingmachineanddryclothesimmediately,sincebacteriaandfungibuildupondampitems,thegroupadvises.
Inthebathroom,thefamilytoothbrushholdercanalsoharborbacteria;ifyouhavetoallsharethesameone,don'tallowthebrushestotoucheachother,theCDCrecommends.
Butitalsosaysthereisnoevidencetosupportdisinfectingtoothbrushesinthemicrowaveorwithultravioletdevicesonthemarket.
Beststrategy:Getanewoneeveryfewmonthsandrinsethoroughlyafterusing.
Andkeepyourtoothbrushawayfromthecommode—especiallythepowerfulflushoftoiletsonairplanes.
Somestudieshaveshownthatflushingsendsasprayofwatercontainingbacteriathatsettlesonpeopleandsurroundingsurfaces.
Ingeneral,fecalparticlesareonlyworrisomeifthey'vecomefromsomeonewithintestinalillnessordiarrhea,butthebestadviceIeverheardwastotreatallairplanebathroomsurfacesasiftheyareradioactive;keepthelidclosedwhenflushing,useapapertoweltohandlelid,faucetsanddoorhandlesafterwashinghands,thenusehandsanitizeroncebackattheseatasanextraprecaution.
Whilesurfacesareoftentheleadingsourceofgerms,remembergermscanthriveinwaterwemayinadvertentlyswallowatpublicswimmingpools(don'tevergetinoneifyouseeababywithoutaswimdiaper)andwaterparks(thinkofallthosepeoplewhomaynotbediligentaboutpersonalhygiene).
Hotelhottubscanbebubblingcauldronsofrash-causingPseudomonasaeruginosa,aschlorineandotherdisinfectantsevaporatemorequicklyinhightemperatures.
Andcommunalshowersmayharborfootfungus.
Afterreviewingallthisdepressinginformation,Iturnedtomyowndoctor,NewYorkinfectiousdiseasespecialistEricNeibart,whohelpedbringmedowntoearth—sortof.
Whatarethechancesofpickingupaninfectiousdiseasefromthegermswecomeincontactwithdaily"Millionsofpeopletouchthingseverydayandnothinghappens,sojustusecommonsense,"Dr.
Neibartadvises.
"There'sabiggerriskofbeinginjuredinataxicab.
"Email:informedpatient@wsj.
comReprintedbypermissionofTheWallStreetJournal,Copyright(c)2009DowJones&Company,Inc.
AllRightsReservedWorldwide.
Licensenumber2304911498823.
DowJones&Company'spermissiontoreproducethisarticledoesnotconstituteorimplythatDowJonessponsorsorendorsesanyproduct,service,company,organization,securityorspecificinvestment.
28WouldyoulikeyourtreatmentcentertobecomepartofthereferralsystemforMDSpatientsandbedesignatedasaCenterofExcellenceToberecognizedasaCenterofExcellence,aninstitutionmusthavethefollowing:Anestablisheduniversity(orequivalent)programRecognizedmorphologicexpertiseinMDSAvailablecytogeneticsand/ormoleculargeneticsUNITEDSTATESALABAMAUniversityofAlabamaatBirminghamComprehensiveCancerCenterBirmingham,AlabamaJamesM.
Foran,MDARIZONAMayoClinicHospitalPhoenix,ArizonaRubenA.
Mesa,MD/JamesL.
Slack,MDUniversityofArizonaArizonaCancerCenterTucson,ArizonaDarukaMahadevan,MD,PhDCALIFORNIACedars-SinaiMedicalCenterUCLASchoolofMedicineLosAngeles,CaliforniaH.
PhillipKoeffler,MDCityofHopeNationalMedicalCenterDuarte,CaliforniaStephenJ.
Forman,MDStanfordUniversityMedicalCenterStanford,CaliforniaPeterL.
Greenberg,MDUCLACenterforHealthScienceUCLASchoolofMedicineLosAngeles,CaliforniaGaryJ.
Schiller,MDUniversityofSouthernCaliforniaKeckSchoolofMedicineLosAngeles,CaliforniaCaseyL.
O'Connell,MDFLORIDAAllChildren'sHospitalSt.
Petersburg,FloridaGregoryHale,MDMayoClinicJacksonville,FloridaAlvaroMoreno-Aspitia,MDUniversityofFloridaShandsHospitalGainesville,FloridaChristopherR.
Cogle,MDUniversityofSouthFloridaH.
LeeMoffittCancerCenterandResearchInstituteTampa,FloridaAlanF.
List,MDGEORGIAEmoryWinshipCancerInstituteEmoryUniversitySchoolofMedicineAtlanta,GeorgiaAmeliaLangston,MDTheBloodandMarrowTransplantProgramatNorthsideHospitalAtlanta,GeorgiaAsadBashey,MDILLINOISLoyolaUniversityChicagoCardinalBernardinCancerCenterMaywood,IllinoisScottE.
Smith,MD,PhDRobertH.
LurieComprehensiveCancerCenterofNorthwesternUniversityFeinbergSchoolofMedicineChicago,IllinoisOlgaFrankfurt,MDRushUniversityMedicalCenterChicago,IllinoisStephanieA.
Gregory,MDJamileShammo,MDUniversityofChicagoMedicalCenterChicago,IllinoisRichardA.
Larson,MDINDIANAIndianaUniversityMedicalCenterIndianapolis,IndianaLarryCripe,MDMARYLANDJohnsHopkinsUniversitySchoolofMedicineBaltimore,MarylandStevenD.
Gore,MDCharlesS.
Hesdorffer,MDNationalHeart,Lung,andBloodInstituteBethesda,MarylandElaineSloand,MDUniversityofMarylandGreenebaumCancerCenterBaltimore,MarylandMariaR.
Baer,MDIvanaGojo,MDMASSACHUSETTSDana-FarberCancerInstituteBoston,MassachusettsDavidP.
Steensma,MD/RichardM.
Stone,MDTuftsUniversitySchoolofMedicineTuftsMedicalCenterBoston,MassachusettsKellieSprague,MDMICHIGANBarbaraAnnKarmanosCancerInstituteWayneStateUniversityDetroit,MichiganCharlesA.
Schiffer,MDWilliamBeaumontHospitalCancerCenterRoyalOak,MichiganIshmaelJaiyesimi,MDMINNESOTAMayoClinicRochester,MinnesotaMarkR.
Litzow,MDUniversityofMinnesotaMedicalCenter,FairviewUniversityofMinnesotaMedicalSchoolMinneapolis,MinnesotaEricaD.
Warlick,MDMISSOURIWashingtonUniversitySchoolofMedicineSitemanCancerCenterSt.
Louis,MissouriJohnF.
DiPersio,MD,PhDNEBRASKAUniversityofNebraskaMedicalCenterOmaha,NebraskaLoriManess,MDOngoingresearch,includingInstitutionalReviewBoard–approvedclinicaltrialsDocumentationofpeer-reviewedpublicationsinthefieldTheabilityandintentiontoregisterpatientsintheMDSInternationalRegistrydatabasePleasecontacttheFoundationforfurtherinformationandanapplicationformforyourcenter.
ThefollowingcentershavequalifiedasMDSCentersofExcellence:NEWJERSEYTheCancerCenterofHackensackUniversityMedicalCenterHackensack,NewJerseyStuartGoldberg,MDNEWMEXICOUniversityofNewMexicoHealthSciencesCenterAlbuquerque,NewMexicoRobertHromas,MDNEWYORKAlbertEinsteinCollegeofMedicineCancerCenterBronx,NewYorkAmitVerma,MDColumbiaUniversityMedicalCenterNewYork,NewYorkAzraRaza,MDMemorialSloan-KetteringCancerCenterNewYork,NewYorkStephenD.
Nimer,MDMountSinaiSchoolofMedicineNewYork,NewYorkLewisR.
Silverman,MDNewYorkMedicalCollege/WestchesterMedicalCenterZalmenA.
ArlinCancerCenterValhalla,NewYorkKarenSeiter,MDNorthShoreUniversityHospitalLakeSuccess,NewYorkStevenL.
Allen,MDRoswellParkCancerCenterBuffalo,NewYorkJamesE.
Thompson,MDUniversityofRochesterCancerCenterRochester,NewYorkJohnM.
Bennett,MDWeillMedicalCollegeofCornellUniversityNewYorkPresbyterianHospitalNewYork,NewYorkEricJ.
Feldman,MD29NORTHCAROLINADukeUniversityMedicalCenterDurham,NorthCarolinaCarlosM.
deCastro,MDWakeForestUniversitySchoolofMedicineComprehensiveCancerCenterWinston-Salem,NorthCarolinaBayardL.
Powell,MDOHIOClevelandClinicFoundationTaussigCancerCenterCleveland,OhioJaroslawMaciejewski,MD,PhDPENNSYLVANIATheWesternPennsylvaniaCancerInstitutePittsburgh,PennsylvaniaJamesM.
Rossetti,DOThomasJeffersonUniversityKimmelCancerCenterPhiladelphia,PennsylvaniaEmmanuelC.
Besa,MDUniversityofPennsylvaniaCancerCenterPhiladelphia,PennsylvaniaSelinaLuger,MDUPMCCancerCentersUniversityofPittsburghCancerInstitutePittsburgh,PennsylvaniaAnastasiosRaptis,MDTENNESSEEVanderbiltUniversityMedicalCenterNashville,TennesseeMadanJagasia,MDStephenStrickland,MDTEXASCancerCareCentersofSouthTexasSanAntonio,TexasRogerLyons,MDCancerTherapy&ResearchCenterInstituteforDrugDevelopmentSanAntonio,TexasSwaminathanPadmanabhan,MDSouthwestRegionalCancerCenterAustin,TexasRichardHelmer,III,MDUniversityofTexasMDAndersonCancerCenterHouston,TexasGuillermoGarcia-Manero,MDHagopKantarjian,MDWASHINGTONFredHutchinsonCancerResearchCenterUniversityofWashingtonSeattleCancerCareAllianceSeattle,WashingtonJoachimDeeg,MDElihuEstey,MDWASHINGTON,DCGeorgetownUniversityHospitalLombardiComprehensiveCancerCenterWashington,D.
C.
CatherineBroome,MDKhaledEl-Shami,MD,PhDWISCONSINMedicalCollegeofWisconsinBoneMarrowTransplantProgramMilwaukee,WisconsinParameswaranHari,MDUniversityofWisconsinMadisonMedicalSchoolMadison,WisconsinMarkB.
Juckett,MDOUTSIDETHEUNITEDSTATESAFRICAConstantiabergMedi-ClinicStellenboschUniversityandTygerbergAcademicHospitalCapeTown,SouthAfricaPeterJacobs,MD,PhDHpitalAzizaOthmanaTunis,TunisiaBalkisMeddeb,MDUniversityofCapeTownGrooteSchuurHospitalCapeTown,SouthAfricaNicolasNovitzky,MD,PhDARGENTINASanatorioGuemesBuenosAiresUniversityBuenosAires,ArgentinaMarceloIastrebner,MDAUSTRALIAPeterMacCallumCancerInstituteUniversityofMelbourneEastMelbourne,AustraliaJohnF.
Seymour,MDUniversityofTasmaniaRoyalHobartHospitalHobart,Tasmania,AustraliaRaymondM.
Lowenthal,MDAUSTRIAUniversityHospitalofInnsbruckInnsbruck,AustriaReinhardStauder,MDUniversityofViennaVienna,AustriaPeterValent,MDBELGIUMAZSint-JanAVBrugge,BelgiumDominikSelleslag,MDUniversityHospitalLeuvenLeuven,BelgiumMichelDelforge,MD,PhDBRAZILACCamargoHospital–CancerCenterSoPaulo,BrazilLuizFernandoLopes,MD,PhDHemocentrodaUNICAMPUniversityofCampinasCampinas,BrazilIreneLorand-Metze,MDServicodeHematologiadoHospitaldasClinicasdaFaculdadedeMedicinadaUniversidadedeSoPauloSoPaulo,BrazilElviraR.
P.
Velloso,MD,PhDUniversidadeFederaldeCearáCeará,BrazilSilviaMariaM.
Magalhes,MD,PhDUniversidadeFederaldeSoPauloSoPaulo,BrazilMariadeLourdesChauffaille,MD,PhDCANADAPrincessMargaretHospitalToronto,Ontario,CanadaKarenYee,MDTorontoSunnybrookRegionalCancerCentreToronto,Ontario,CanadaRichardA.
Wells,MDUniversityofTorontoHospitalforSickChildrenToronto,Ontario,CanadaYigalDror,MDCHINAInstituteofHematologyandBloodDiseasesHospitalChineseAcademyofMedicalSciencesTianjin,ChinaZhijianXiao,MDCROATIAUniversityHospitalCenterZagrebSchoolofMedicineZagreb,CroatiaBorisLabar,MD,PhDRankaServenti-Seiwerth,MDCZECHREPUBLICInstituteofHematology&BloodTransfusionPrague,CzechRepublicJaroslavCermák,MD,PhDSuzanneFleischmanMemorialFundforPatientAdvocacyAfundhasbeenestablishedbytheMDSFoundationinmemoryofSuzanneFleischman.
ContributionsmaybesenttotheFoundationwithanotationdesignatingtheSuzanneFleischmanMemorialFundforPatientAdvocacy.
Newdonationshavebeenmadeby:EdwardFleischmanUniversityofNotreDamePrescott,AZNotreDame,INRoslynRaneyMenloPark,CA30DENMARKOdenseUniversityHospitalTheUniversityofSouthernDenmarkOdense,DenmarkGitteBirkKerndrup,MDRigshospitaletNationalUniversityHospitalCopenhagen,DenmarkLarsKjeldsen,MD,PhDUniversityofrhusTheUniversityHospitalrhus,DenmarkMetteSkovHolm,MD,PhDFRANCECentreHenriBecquerelRouenUniversitySchoolofMedicineRouen,FranceAspasiaStamatoullas,MDCentreHospitalierUniversitaire(CHU)deAngersServicedesMaladiesduSangAngers,FranceNorbertIfrah,MDCentreHospitalierUniversitaire(CHU)deGrenobleGrenoble,FranceJean-YvesCahn,MDCentreHospitalierUniversitaire(CHU)deLimogesHpitalDupuytrenLimoges,FranceDominiqueBordessoule,MDCentreHospitalierUniversitairedeNancyNancy,FranceAgnésGuerci-Bresler,MD,PhDHpitalAvicenne/UniversityParisXIIIBobigny,FrancePierreFenaux,MDHpitalClaudeHuriez,CHULilleServicedesMaladiesduSangLille,FranceBrunoQuesnel,MDHpitalCochin/UniversityParisVParis,FranceFrancoisDreyfus,MDHpitalSaintLouis/UniversityParisVIIParis,FranceChristineChomienne,MD,PhDInstitutPaoli-CalmettesMarseille,FranceNorbertVey,MDGERMANYGeorg-August-UniversittGttingenGttingen,GermanyDetlefHaase,MD,PhDHannoverMedicalSchoolMedizinischeHochschuleHannoverHannover,GermanyArnoldGanser,MDHeinrich-HeineUniversittDüsseldorfUniversityHospitalDüsseldorf,GermanyUlrichGerming,MDJohannWolfgangGoetheUniversittFrankfurtMain,GermanyGesineBug,MDMLLMünchnerLeukmielaborMunich,GermanyTorstenHaferlach,MDSaarlandUniversityMedicalCenterHomburg/Saar,GermanyUlrichMahlknecht,MD,PhDSt.
JohannesHospitalHeinrich-HeineUniversittDuisburg,GermanyCarloAul,MD,PhDAlbert-Ludwigs-UniversittFreiburgFreiburg,GermanyMichaelLübbert,MD,PhDUniversittHamburgHamburg,GermanyNicolausKrger,MD,PhDUniversittsklinikumCarlGustavCarusDresden,GermanyUwePlatzbecker,MDUniversityChildren'sHospitalFreiburg,GermanyCharlotteNiemeyer,MDUniversityofCologneCologne,GermanyKarl-AntonKreuzer,MDUniversittsklinikumBenjaminFranklinBerlin,GermanyOlafHopfer,MDUniversityHospitalMannheimMannheim,GermanyWolf-KarstenHofmann,MD,PhDGREECEPatrasUniversityHospitalPatras,GreeceNicholasC.
Zoumbos,MD,PhDUniversityGeneralHospitalAttikonAthens,GreeceTheofanisEconomopoulos,MDUniversityofAthensLaikonHospitalAthens,GreeceNoraViniou,MDHUNGARYSemmelweisUniversitySchoolofMedicineBudapest,HungaryJuditVárkonyi,MD,PhDINDIAArmyHospital(Research&Referral)NewDelhi,IndiaLtCol(Dr.
)DeepakKumarMishra,MDTataMemorialHospitalMumbai,IndiaPurvishParikh,MDIRELANDAdelaideandMeathHospitalDublin,IrelandHelenEnright,MDWelcomeAdditionstoMDSCentersofExcellenceTheMDSFoundationispleasedtoannouncethefollowingadditionstoourCentersofExcellenceprograminMDS:ColumbiaUniversityMedicalCenterNewYork,NewYorkAzraRaza,MDTheBloodandMarrowTransplantProgramatNorthsideHospitalAtlanta,GeorgiaAsadBashey,MDUniversityofCologneCologne,GermanyKarl-AntonKreuzer,MDNationalTaiwanUniversityHospitalTaipei,TaiwanHwei-FangTien,MD,PhDUniversityHospitalMannheimMannheim,GermanyWolf-KarstenHofmann,MD,PhDUniversityHospitalofWalesCardiff,UKJonathanKell,MDSeoulNationalUniversityHospitalSeoulNationalUniversityCollegeofMedicineSeoul,KoreaDongSoonLee,MD,PhD31ISRAELTel-AvivSouraskyMedicalCenterTel-Aviv,IsraelMosheMittelman,MDITALYCentrodiRiferimentoOncologicodiBasilicata(CROB)RioneroinVulture(PZ),ItalyPellegrinoMusto,MDIstitutodiEmatologiaUniversita'CattolicaSacroCuoreRoma,ItalyGiuseppeLeone,MDMariaTeresaVosa,MDUniversityofFlorenceAziendaOSPCareggiFlorence,ItalyValeriaSantini,MDUniversityofPaviaMedicalSchoolPavia,ItalyMarioCazzola,MDUniversityTorVergata,OspedaleS.
EugenioRoma,ItalyElisabettaAbruzzese,MD,PhDJAPANKyotoUniversityHospitalKyoto,JapanTakashiUchiyama,MDNagasakiUniversityHospitalSchoolofMedicineAtomicBombDiseaseInstituteNagasakiCity,JapanMasaoTomonaga,MDNipponMedicalSchoolTokyo,JapanKiyoyukiOgata,MD,PhDSaitamaInternationalMedicalCenterSaitamaMedicalUniversitySaitama,JapanAkiraMatsuda,MDTokyoMedicalCollegeTokyo,JapanKazumaOhyashiki,MDKOREACatholicBloodandMarrowTransplantationCenterTheCatholicUniversityofKoreaSeoul,KoreaYoo-JinKim,MDSeoulNationalUniversityHospitalSeoulNationalUniversity,CollegeofMedicineSeoul,KoreaDongSoonLee,MD,PhDTHENETHERLANDSUniversityMedicalCenterNijmegenSt.
RadboudNijmegen,TheNetherlandsTheoJ.
M.
deWitte,MD,PhDVrijeUniversiteitMedicalCenterAmsterdam,TheNetherlandsGertJ.
Ossenkoppele,MD,PhDPOLANDJagiellonianUniversityCollegiumMedicumKraków,PolandAleksanderSkotnicki,MD,PhDPORTUGALHospitaldeSantaMariaLisbon,PortugalJoaoF.
Lacerda,MDROMANIAFundeniClinicalInstituteBucharest,RomaniaRaduGologan,MD,PhDSAUDIARABIAKingFaisalSpecialistHospital&ResearchCentreRiyadh,SaudiArabiaMahmoudDeebAljurf,MDKingKhaledUniversityHospitalKingSaudUniversityRiyadh,SaudiArabiaAkAlmomen,MDSINGAPORESingaporeGeneralHospitalSingaporeLay-ChengLim,MDSPAINHospitalUniversitariodeSalamancaSalamanca,SpainConsuelodelCaizo,MD,PhDHospitalUniversitarioLaFeValencia,SpainMiguelA.
Sanz,MD,PhDHospitalUniversitarioValld'HebronLaboratoriodelCitologia-CitogéneticaBarcelona,SpainMariaTeresaVallespi-Sole,MD,PhDSWEDENKarolinskaInstitutetHuddingeUniversityHospitalStockholm,SwedenEvaHellstrm-Lindberg,MD,PhDTAIWANNationalTaiwanUniversityHospitalTaipei,TaiwanHwei-FangTien,MD,PhDTHAILANDKingChulalongkornMemorialHospitalPathumwan,Bangkok,ThailandTaninIntragumtornchai,MDTURKEYAnkaraUniversitySchoolofMedicineHospitalAnkara,TurkeyOsmanIlhan,MDUKRAINEResearchCenterforRadiationMedicineKiev,UkraineDimitryBazyka,MDUNITEDKINGDOMKing'sCollegeHospitalUniversityofLondonLondon,EnglandGhulamJ.
Mufti,MDLeedsGeneralInfirmaryTheLeedsTeachingHospitalsLeeds,EnglandDavidT.
Bowen,MDAddenbrookesHospitalCambridgeUniversityHospitalsNHSFoundationTrustCambridge,EnglandAlanJ.
Warren,PhD,FRCP,FRCPathQueenElizabethHospitalUniversityHospitalBirminghamNHSTrustBirmingham,EnglandCharlesCraddock,MDRadcliffeHospitalsandUniversityofOxfordOxford,EnglandPareshVyas,MDRoyalBournemouthHospitalBournemouth,EnglandSallyKillick,MDAberdeenRoyalInfirmaryAberdeenUniversitySchoolofMedicineForesterhill,Aberdeen,ScotlandDominicCulligan,MDUniversityHospitalofWalesCardiff,WalesJonathanKell,MD32InternationalClinicalTrials:AnUpdateNATIONALCANCERINSTITUTETRIALSAswegotopresstheNationalCancerInstitute(NCI)haslistedmorethan100clinicaltrialsthatfocusonmyelodysplasticsyndromes.
Fullstudyinformationonthesetrialsisavailableatwww.
cancer.
gov.
Thisinformationincludesbasicstudyinformation,studyleadorganizations,studysites,andcontactinformation.
Toaccesstheinformation:Logontowww.
cancer.
govClickon"SearchforClinicalTrials"Clickon"TypeofCancer"andtypein'myelodysplasticsyndromes'HitsearchThissearchwillprovideyouwithallthetrialscurrentlyunderwayinMDS.
Youmayalsosortbytrialsthatonlyfocusontreatmentortrialsthatonlyfocusonsupportivecare.
Toviewlistingsofadditionalstudiesyoucanlogontowww.
clinicaltrials.
gov.
Fortelephonesupport,calltheNationalCancerInstituteat1-800-4-CANCER.
IfyouareanMDSpatient,youmaywishtodiscussatrialwithyourprimarytreatingphysiciantoseeifyouqualifyasacandidate.
Clinicaltrialsstudynewinterventions(drugsorprocedures)toevaluatetheirsafetyandeffectivenessinhumans.
Trialsfollowacarefulsetofsteps,allowingforthesystematicgatheringofinformationtoanswerquestionsandconfirmhypothesesthatwereformedearlier,ineitherlaboratoryexperimentsorpreliminarytrials.
Aclinicaltrialfallsintooneoffourphases:PhaseI.
Thisisthefirsttimeadrugisusedinhumans.
Thetrialisdesignedtodeterminedosage,routeofadministration(oral,intravenous,orbyinjection),andscheduleofadministration(howmanytimesadayorweek).
Inthisphaseresearchersalsobegintodeterminethedrug'ssafety.
ThephaseItrialisnormallyconductedinhealthyadultsandenrollsonlyasmallnumberofpeople.
PhaseII.
Patientswiththediseasereceivethedrugatdoselevelsdeterminedintheearlierphase.
ThephaseIItrialbeginstodeterminetheeffectivenessofthedrugandprovidesmoreinformationaboutitssafety.
PhaseIII.
Thedrugistestedaloneoragainstanapprovedstandarddrug.
ThetypicalphaseIIItrialenrollsalargenumberofpatients.
Ifitisacomparisontrial,patientsmayberandomlyassignedtoreceiveeitherthenewdrugorthestandardintervention.
PhaseIV.
InphaseIVthedrug,alreadyapprovedbytheFDAandavailabletothepublic,undergoescontinuedevaluation.
ThephaseIVdesignationisrare.
Sometrials—screeningstudiesevaluatingsupportivecareorprevention—arenotconductedinphases.
Inthesetrialsagroupfollowingacertaindiseasecombatingstrategy,suchasadetectionmethod,iscomparedtoacontrolgroup.
NewResearchProtocolListingsTheMDSFoundationwantsyoutoknowaboutclinicaltrialsofinvestigationaltreatmentoptionsforpatientswithMDSandhasupdateditsInternationalClinicalTrialslistonourwebsiteandfordistribution.
Pleasecontactusforadetailedlistingfeaturingnewprotocols:Website:www.
mds-foundation.
orgEmail:uspatientliaison@mds-foundation.
orgorcall800-MDS-0839andthecurrentclinicaltrialswillbesenttoyou.
Clinicaltrialsoftenhaveveryspecificeligibilityrequirements.
Pleasetalkwithyourdoctortohelpdecidewhich,ifany,trialsmightberightforyou.
Pleasenotethattheinformationisprovidedstrictlyasaresourceandisnotanendorsementofanyphysician,institution,ortreatment.
InformationonClinicalTrialsClinicalResearchTrialwithEltrombopag–NowOpenforAccrualPMA112509WewouldliketoannounceaclinicaltrialforpatientswithadvancedMyelodysplasticSyndrome(MDS)orsecondaryAcuteMyeloidLeukemiaafterMDS(sAML/MDS),ordenovoAMLwhohaveassociatedthrombocytopenia(lowplateletcounts).
TheMyelodysplasticSyndromesFoun-dationisassistingintheaccrualofpatientsforClinicalTrialPMA112509.
ThepurposeofthisphaseI/IIplacebo-controlledstudyistotestthesafetyofeltrombopaginpatientswithlowplateletcountsduetoMDS,sAML/MDS,ordenovoAML,andalsotoseehowwelleltrombopagmayworkatdifferentdosesinthispatientpopulation.
Eltrombopagisanorallyavailable,smallmoleculethrombopoietinreceptoragonistthatisapprovedasatreatmentforchronicimmune(idiopathic)thrombocytopenicpurpura(ITP)toincreaseplateletcounts.
Thepresentstudyisdesignedtoevaluatethesafetyandtolerabilityofeltrombopag,administeredasoraltabletsoncedailyinadultthrombocytopenicsubjectswithadvancedMDS,sAML/MDS,ordenovoAML.
Inanefforttomovetheclinicaldevel-opmentofeltrombopagforthetreatmentofMDS,sAML/MDS,ordenovoAMLforwardasrapidlyaspossible,theFoundationwouldappreciatehearingfromyou.
IfyouareaphysicianandwouldliketoreferapatientforenrollmentintothisclinicaltrialorifyouareanMDSpatientwhohaslowplateletcounts,pleasecontactTheMDSFoundationat1-800-MDS-0839.
33BeaBoneMarrowDonorForthosepatientsdiagnosedwithafatalblooddisorder,bonemarrowtransplantation(BMT)isoftentheonlychanceofsurvival.
Relateddonorsprovidesuitablematchesonly33percentofthetime.
Thisleavesnearly70percentofpatientswithoutamatch.
Theneedisespeciallycriticalinracialandethnicminoritygroups.
Registeringasadonorissimple.
AbloodsampleisallyouneedtoenteryourtissuetypeintotheNationalMarrowDonorProgram(NMDP)computerizedregistry.
Ifyouareingoodhealthandbetweentheagesof18and55,youcancontactNMDPat1-800-MARROW-2.
Theywillsendadditionalinformation,includingtheNMDPcenternearestyou.
GivetheGiftofLife!
Othersitesofinterest:ASBMTAmericanSocietyforBloodandMarrowTransplantation:www.
asbmt.
orgInternationalBoneMarrowTransplantRegistry:www.
isbmtr.
orgNationalMarrowDonorProgram:www.
marrow.
orgBlood&MarrowTransplantInformationNetwork:www.
bmtinfonet.
orgBlood&MarrowTransplantResources:www.
BMTresources.
orgBoneMarrowandCordBloodTransplantation:http://bloodcell.
transplant.
hrsa.
govOver140ThingsYouNeedtoKnowaboutYourAutologousBoneMarroworStemCellTransplantisavailableonlineatwww.
BMTresources.
orgorcall414-870-4850,ISBN#0-9768060-0-2/Price:$11.
95.
Containsover140invaluabletipstohelptransplantpatientssailthroughtheirprocedures.
SUBMITTEDFROMUSABONEMARROWTRANSPLANTATIONOnlineSearchToolforClinicalTrialsTrialCheckisanotheronlinesearchtoolthathelpsyougatherinformationaboutcancerclinicaltrialstodiscusswithyourdoctor.
Thisuser-friendlytoolallowsyoutosearchfortrialsaccordingtoyourtypeofcancerandaccordingtoyourzipcode.
Thiswillhelpyoulocatephysiciansandhospitalsnearyourhomethatoffertrials.
TrialChecksearchingisbasedonninesimplequestions.
Dependingupontheanswersyouprovide,TrialCheckgeneratesalistoftrialsinwhichyoumaybeeligibletoenroll.
www.
CancerTrialsHelp.
org34EducationalResourcesSegment1–ThePast&PresentinMDSSegment1providesinsightintothehistoryofMDS,developmentoftheMDSclassificationandprognosticsystems,andaglimpseintothefutureofMDSdiagnosis,researchandtreatment.
Segment2–ClinicalPresentation,Diagnosis&PathologySegment2providesinsightintotheclinicalpictureofadultandpediatricMDS,primaryandsecondaryMDS,FABandWHOClassificationsystem,andrationalefortheproposedMDSpediatricclassificationsystem.
Segment3–IneffectiveHematopoiesis:ConsiderationsinDiagnosis&TreatmentSegment3providesinsightintothepathogenicmechanismsthatcontributetothedevelopmentofMDS,includingthealteredbonemarrowmicroenvironmentofMDSintermsofcells,cytokines,growthfactors,receptors,andmicrovasculature;dyserythropoiesisinMDS,andtherapeutictargetsandapproveddrugsforthetreatmentofMDS.
Segment4–AnemiainMDS:Survival,QoL,&TreatmentOptionsSegment4isanoverviewofsupportivecarewithafocusonRBCtransfusionsanditseffectonthemorbidityandmortalityofMDSpatients.
Thissegmentalsolooksatthequalityoflifeissuesfromtheperspectivesofthephysical,functional,emotional,socialandcostimpactsonthepatientwithMDS.
Segment5–AzacitidineinMDSSegment5looksatthemechanismofactionoftheMDStreatment,azacitidineandpatientselectioncriteriaforuse.
Thelabeledandlicensedindicationsaswellasassociatedrisksofazacitidinearereviewed.
Segment6–LenalidomideinMDSSegment6looksatthemechanismofactionoftheMDStreatment,lenalidomideandpatientselectioncriteriaforuse.
Anoverviewofthelabeledandlicensedindicationsaswellasassociatedrisksisreviewed.
UnderstandingMDS:APrimerforPracticingCliniciansVisitwww.
mds-foundation.
organdclickonTheMDSFoundationResourceCentertotakeadvantageofthiscomprehensiveprogram,andotherinformativeprogramscomingsoon,designedtoprovideyouwithtoolsandinformationthatwillassistyouinadministeringthebestcaretoyourpatients.
Thismulti-segmentprogramwillallowparticipantstochoosethesegmentsthatinterestthemandtolearnattheirownpace.
Segmentsmaybecompletedviaawrittenprogram,onlineinourtechnologicallyadvancedMDSFoundationEducationalCenter,orviaCD-ROMontheirpersonalcomputer.
Thismulti-segmentprogramisavailableinthefollowinglanguages:English,French,German,Italian,JapaneseandSpanish.
Theprogramisapprovedfor1hourofCMEcredituponcompletion.
Thereisnochargeforthiseducationalactivity.
TheMyelodysplasticSyndromesFoundationstrivestoserveasaneffectiveconduitforinformationregardingthemostupdatedtreatmentoptions,clinicalstudies,referralstoCentersofExcellence,andotherinformationconcerningMDS.
Pleasebookmarkoursite,www.
mds-foundation.
org,andcheckbackfrequentlyfornew,informativeprograms.
35MyelodysplasticSyndromes:ClinicalandBiologicalAdvancesPeterL.
Greenberg,MDStanfordUniversityMedicalCenterHardback,Nov.
2005/320pp.
,illus.
ISBN:0521496683/$168.
00**CambridgeUniversityPressAsthecurrentmajorcomprehensivereferenceonallaspectsoftheclinicalclassificationunderlyingpathogeneticmech-anismsandtreatmentofthemyelodysplasticsyndromes,MyelodysplasticSyndromesstandsoutasthedefinitivetextonthegenetics,pathophysiology,andclinicalmanagementofthiswiderangeofsyndromes.
Authoredbyinternationalexperts,thisbookprovidesastate-of-the-artupdateofthecurrentstatusandrecentadvancesinthefield.
Thechapterscoverallaspectsofthemyelodysplasticsyndromes,fromanin-depthanalysisofthemultifactorialnatureofthisdisease,includingacarefulassessmentofstromal,immunologicalandstemcellabnormalities,toareviewofrecentmolecularandcytogeneticdiscoveriesandinsights.
Thisbookwillbeavaluableresourcetocliniciansandresearcherswhowishtolearnmoreaboutmyelodysplasticsyndromes.
MyelodysplasticSyndromes&SecondaryAcuteMyelogenousLeukemia:DirectionsfortheNewMillennium(CancerTreatmentandResearch)Editedby:AzraRaza,MD;SuneelD.
Mundle,PhDJune2001/278pp.
,illus.
ISBN:0792373660/$228.
00**SpringerPressMyelodysplasticsyndromesaretothebonemarrowwhatpneumoniaistothelungs:theresponseofanorgantoavarietyofetiologicinsultslikeaging,toxicexposure,infectionsandauto-immunity.
Amonginfectiouscausesalone,pneumoniacouldbetheresultofavarietyofpossiblepathogensincludingbacterial,viral,tuberculousorfungalagents.
Similarly,MDScannotbetreatedasasingledisease.
AttemptstoharnesstheinherentcomplexityofMDSbydevising"classifications"whichgroupthevarioussyndromesasonediseaseisasmisguidedassayingthatapneumoniaisnotinfectiousbecauseitdidnotrespondtoantibiotics.
Progressinthefieldwilloccurfasterwhenwere-analyzethispremise.
Therefore,untilaclearerpictureofthediseaseemerges,itisbesttotreateachoftheMDSsyndromesasaseparateentity.
Havingnoclassificationisbetterthanamisleadingone.
ThisbookisourattempttodefinethemostcrucialquestionsrelatedtoMDSthatneedtobeaddressedimmediatelythroughlogic,analysis,andrigorousexperimentation.
Iftheemergingproblemsappeardaunting,theninsteadofbeingoverwhelmedbythem,weshouldfollowtheadviceofthegreat20thcenturythinkerAntonioGramsci,"pessimismoftheintellectmustbefacedwiththeoptimismofwill.
"MyelodysplasticSyndromes,SecondEdition:PathobiologyandClinicalManagement(BasicandClinicalOncology)Editedby:DavidP.
Steensma,MDNovember2008/536pp.
,illus.
ISBN:978-01420074390/$250.
00**InformaHealthCareThisreferenceprovidesacomprehensiveoverviewofthelatestresearchdetailingtheetiology,epidemiology,treatment,anddetectionofmyelodysplasticsyndromesMyeloproliferativeDisorders:BiologyandManagementEditedby:RichardT.
Silver,MD;AyalewTefferi,MDOctober2007/240pp.
,illus.
ISBN:9781420061628/$200.
00**InformaHealthCareMyeloproliferativeDisorders,writtenbyinternationalrenownedexpertsinthefield,examines:–Newanddevelopingdiagnosticprotocolsandalgorithmsandsupportivecareregimens–Theevolutionandclassificationofrecentmyeloproliferativedisorders–Advancementsandtheimplicationsarisingfromclinicalcareandpractice–TheactivatingJAK2V617Fdevelopedinachapterbytopexperts–Theoverlapbetweenmyeloproliferativedisordersandmyelodysplasticsyndromes–Theimportanceofhistopathologyandcyto-geneticsonunderstandingthesediseasesWiththerecentdiscoveryofJAK2mutationsinmyeloproliferativedisorders,medicalsciencehastakenarevolutionarystrideforwardtowardunderstandingthepathogenesisofthesediseases.
Thisnewadvancementtranslatesnotonlytoamorerapidandreliablediagnosis,butalsoallowsgroundbreakingresearchintothedevelopmentofnewtherapeutics.
Writteninaneasy-to-followtextMyeloproliferativeDisordersgivesthepracticingclinicianasinglesourceanswertoclassification,diagnosis,management,andrecentadvancesinthisdisorder.
HelptheFoundationandBuyYourMDSTextbooksFromUs!
(MDS)—identifyingeffectivetherapeuticregimens,adverseenvironmentalandgeneticfactors,andefficientmodalitiesofsupportivecarethatimprovepatientsurvivalandenhancequalityoflife.
36HighlightsofLatestLiteratureinMDSSuneelD.
Mundle,PhDListedbelowarecitationsofsomenewpublicationsrelevanttoMDS(pathogenesis,clinicalcharacterization,management,etc.
).
Toaccessthecompletearticlelogontowww.
pubmed.
gov.
EPIDEMIOLOGY:1.
GoldbergSLetal.
IncidenceandclinicalcomplicationsofMyelodysplasticSyn-dromesamongUnitedStatesmedicarebeneficiaries.
JClinOncol.
2010;Apr26[Epubaheadofprint].
TheincidenceofnewlydiagnosedMDSpatientsregisteredduring2003inMedicareStandardAnalyticFileswithage≥65yrwas162per100,000cases,whichmayyieldavalueof45,000newcasesayearintheUSmedicarepopulation65yrorolder.
ThestudyalsoshowedhigherincidenceofcomorbiditiesinpatientsrequiringRBCtransfusions.
Additionally,thetransfusionstatuscorrelatedwithhigherrateofleukemictransformationandhighratesofmortality.
2.
EhsanAandAzizM.
Clinico-haemato-logicalcharacteristicsinPakistanipatientsofprimarymyelodysplasticsyndromeaccordingtoworldhealthorganizationclassification.
JCollPhysiciansSurgPak.
2010;20(4):232-236.
AsmallstudythatisinlinewithearlierobservationofyoungermeanageofMDSatdiagnosisinAsiaascomparedtotheadvancedageofwesternpatients.
Forty-sixpatientsevaluatedhadmeanageof46.
21yr,higherpreponderanceofdiseaseamongmalesandahighincidenceofRCMDclass.
3.
Dayyanietal.
Causeofdeathinpatientswithlower-riskmyelodysplasticsyndrome.
Cancer.
2010;116(9):2174-2179.
Thisretrospectivesinglecenterstudyof273deceasedcaseswithlow-riskMDSrecordedcauseofdeathin84%casesasMDS-relateddeath(38%asaresultofinfection,15%duetotransformationintoAML,13%hemorrhageandtherestwerelabeledasdiseaseprogressionorothers).
DIAGNOSISANDPROGNOSIS:1.
Costaetal.
DoweneedtodofluorescenceinsituhybridizationanalysisinmyelodysplasticsyndromesasoftenaswedoLeukRes.
2010;Mar10[Epubaheadofprint].
FishstudiesconfirmedthefindingsofconventionalG-bandingcytogeneticsin99.
4%casesanddetectedabnormalitiesinadditional25%casesinwhichthelatterhadfailed.
NovaluewasseeninconductingFISHincaseswithnormalcytogenetics.
2.
YangWetal.
FISHanalysisinadditiontoG-bandkaryotyping:utilityinevaluationofmyelodysplasticsyndromesLeukRes.
2010;34(4):420-425.
Uponevaluationofaseriesof110MDSpatients,thisreportconcludedthatFISHmaybeinformativeonlyincaseswithfailureofconventionalkaryotypingandwouldhavemarginalutilityincaseswhereG-bandingconclusivelydemon-stratednormalkaryotype.
TREATMENT:GrowthFactor:1.
OlivaENetal.
Darbepoetinalfaforthetreatmentofanemiaassociatedwithmyelodysplasticsyndromes:efficacyandqualityoflife.
LeukLymphoma.
2010;Apr6[Epubaheadofprint].
Fortyonepatientsweretreatedwithadoseof150g/week(increasedto300g/weekinnon-responsivecases).
Responseratesintransfusiondependentpatientswere59%andinnon-transfusiondependentcaseswere56%withincreaseof1ginthemeanHblevelsduring24weeksoftreatment.
Durationofresponsewas22weeksinnontransfusiondependentand15.
1weeksintransfusiondependentcases.
100Questions&AnswersAboutMyelodysplasticSyndromesBy:JasonGotlib,MD,MS;LennFechter,RN,BSNDecember2007/172pp.
,illus.
ISBN:9780763753337/$19.
95**JonesandBartlettPublishers:800-832-0034;www.
JBpub.
comWhetheryou'reanewlydiagnosedpatient,asurvivor,orlovedoneofsomeonesufferingfromMDS,thisbookoffershelp.
Theonlytextavailabletoprovideboththedoctor'sandpatient'sviews,100Questions&AnswersAboutMyelodysplasticSyndromes,providespractical,authoritativeanswersto100ofthemostcommonquestionsasked.
Writtenwithcommentaryfromactualpatients,thisisaninvaluableresourceforanyonestrugglingwiththemedical,physical,andemotionalturmoilofthisdisease.
**AllpricesareinUSdollars.
Toorder,calltheMDSFoundation:1-800-MDS-0839TERMSOFTHEOFFER:AllindividualordersmustbeprepaidbycheckormoneyorderorchargedonVisa,Mastercard,orAmEx.
Canadianresidents,pleaseadd7%GST.
ResidentsofCAandNY,pleaseaddlocalsalestax.
Shippingandhandlingchargesmayapplydependingonthedeliveryzoneandpackageweight.
37DemethylatingAgents:1.
MoonJHetal.
PredictivevalueofpretreatmentriskgroupandbaselineLDHlevelsinMDSpatientsreceivingazacitidinetreatment.
AnnHematol.
2010;Mar17[Epubaheadofprint].
Thisretrospectivestudyoverawindowof2years,2006–2008,assessedout-comesofazacitidinetreatmentof126MDSpatients.
ThestudycomparedmediansurvivalindifferentIPSSandWPSSclasses.
MarkedlyWPSShigh/veryhighriskcategoryshowedhigherOSascomparedtoIPSShighriskcategory(14.
9movs.
6.
3morespectively).
Also,highLDHlevelswerefoundtobecorrelatedwithpoorprognosis(OS–13.
9moinhighvs.
20.
6moinnormal).
2.
MustoPetal.
Azacitidineforthetreatmentoflowerriskmyelodysplasticsyndromes:aretrospectivestudyof74patientsenrolledinanItaliannamedpatientprogram.
Cancer.
2010;116(6):1485-1494.
Thestudyfocusedonefficacyandsafetyofazacitidineinlower-riskpatients,84%ofwhomweretransfusiondependentatbaseline.
Azacitidinewasadministeredatadoseof75mg/m2qdwithmajorityreceiving5or7dayregimens.
Athirdofthepatientsweretreatedatafixeddoseof100mgdailyonsimilarregimens.
Treatmentcontinuedforamedianof7cycles.
PerIWG2006criteria,ORR–45.
9%(CR–10.
8%,PR–9.
5%,HI–20.
3%).
TheORRwashigherinpatientscompleting≥4cycles(51.
6%).
MedianDOR6mowithsurvivalbenefitseeninrespondersascomparedtonon-responders.
MajorGr3/4AE-myelo-suppressionandinfection.
PATHOBIOLOGY:1.
SteensmaDPetal.
P39/TsuganecellsareafalsecelllinecontaminatedwithHL-60cellsandarenotsuitableformechanisticstudiesinmyelodysplasticsyndromes.
Haematologica.
2010;Apr26[Epubaheadofprint].
ThisletterreviewsthecontaminationstatusandcautionsagainsttheuseofP39/Tsuganecellsinfuture.
2.
ZhengZetal.
InVitrodeprivationofCD8+CD57+T-cellspromotesthemalignantgrowthofbonemarrowcolonycellsinpatientswithlower-riskmyelodysplasticsyndrome.
ExpHematol.
2010;Apr12[Epubaheadofprint].
Thisstudyreportedonthepresenceofintactimmunesurveillanceelement,i.
e.
CD8+CD57+cellsthatdemonstrateinhibitoryactivityagainstMDSbonemarrowmononuclearcells,butnotagainstthosederivedfromnormalmarrows.
Ofnote,theinhibitoryactivitywasmorepronouncedagainstcyto-geneticallyabnormalcells.
3.
PellagattiAetal.
Deregulatedgeneexpressionpathwaysinmyelodysplasticsyndromehematopoieticstemcells.
Leukemia.
2010;24(4):756-764Thisstudyconductedglobalgeneprofilingin183MDSpatientsand17healthycontrols.
Thestudyhighlightsderegulationofdistinctmolecularpathwayscorrelatingwithdifferentcytogeneticabnormalities.
Trisomy8hadderegulationinimmuneresponsepathway,–7/del7qshowedinvolvementofcellsurvivalpathways,whereasdel5qshowedderailmentofintegrinpathwaysandcellcycleregulation.
4.
LangeKetal.
Telomereshorteningandchromosomalinstabilityinmyelodys-plasticsyndromes.
GenesChromosomesCancer.
2010;49(3):260-269.
Inlinewithearlierdata,theauthorshavereportedtelomereshorteninginMDS.
Additionally,thereportalsoshowedthatnormalandaberrantmetaphasesfromthesamepatienthadnodifferenceintelomericlength,indicatingthediseaseorigininaveryearlystemcell.
NOTE:SpecialJournalissueonMDS1.
HematolOncolClinNorthAm.
2010;24(2)Reviewarticlesondiagnosis,prognosisincludingWHO,IPSSandWPSSsystemevaluations,existingandnewtreatments,ironoverload,and,biology,cytogeneticsandgenomicsofMDS,etc.
WewouldliketothankSuneelMundle,amemberoftheMDSFoundation,forhisassistanceinmonitoringtheseimportantpeer-reviewpublicationsonMDS.
InsuranceandDrugReimbursementResourceGuideWehaveassembledalistingofinsuranceanddrugreimbursementresourcesforMDSpatients.
Itisimportanttoknowthatthereissupportforthosewhocannotaffordmedicineorotherhealthcarecosts.
Wehopethisnewresourcewillbebeneficialinhelp-ingyouwithyourmedicalneeds.
ThisguidetoassistanceprogramsintheUnitedStatesisavailablefordownloadfromtheFoundation'swebsiteorcanbeorderedinbookletformuponrequest.
themyelodysplasticsyndromesfoundation,inc.
38MDSFoundationPublicationsPatientInformation&EducationalMaterialsAvailablefromtheMDSFoundationTheMDSNewsMDSEssentials:Foundation'sE-NewsletterPatientDiaryUnderstandingMyelodysplasticSyndromes:APatientHandbookTransfusion-DependentIronOverloadandMDS:AHandbookforPatientsInsuranceandReimbursementResourcesforMDSPatientsPlannedGivingProgram:AGuidetoFinancialPlanningAllofthesematerialsareavailablefreeofchargefromtheFoundation.
MDSHandbooksNowAvailableinMultipleLanguagesUnderstandingMyelodysplasticSyndromes:APatientHandbookTransfusion-DependentIronOverloadandMDS:AHandbookforPatientsInadditiontoEnglish,theHandbookisavailableinthefollowinglanguages:NewfromtheMDSFoundation.
.
.
ItTakesTimetoRealizeYourGoalsWhatDoesMyBoneMarrowDoARABICHEBREWROMANIANCZECHHUNGARIANRUSSIANDUTCHITALIANSPANISHFRENCHJAPANESESWEDISHGERMANPOLISHTURKISHGREEKPORTUGUESEInadditiontoEnglish,theHandbookisavailableinthefollowinglanguages:ARABICHEBREWROMANIANCZECHHUNGARIANRUSSIANDUTCHITALIANSPANISHFRENCHJAPANESESWEDISHGERMANPOLISHTURKISHGREEKPORTUGUESE39ContributionstotheMDSFoundationThankYou!
SusanJ.
FerberInmemoryofDr.
JeromeFerberNewYork,NYPeetandAldeaneSootLakeOswego,ORAlfredandDorothyHardingMedford,NJPaulDaveWinchester-HampshireUnitedKingdomMarilynSlotnickTomsRiver,NJLaurenM.
Hollanderc/oUnitedWayofNewYorkCityNewYork,NYJosephArtusoBerwyn,PABillPearsonHamilton,OntarioCanadaMaryMiyawakiHonolulu,HIEleanorJostromWhiting,NJSrivatsanRajagopalCupertino,CAVirginiaJ.
MillerExport,PASalehYugudaIbadan,OyoNigeriaJamesHoustonCountyFermanaghN.
IrelandLarryBeckSalina,KSRaymondMallesWarminster,PennsylvaniaMerckPartnershipforGivingPrinceton,NewJerseyPfizerFoundationMatchingGiftProgramsPrinceton,NewJerseyUnitedHealthGroupEmployeeGivingCampaignPrinceton,NewJerseyMaryK.
ParkinsonAnnapolis,MDMichaelLosowandTalecrisBiotherapeuticsResearchTrianglePark,NCRajeevB.
PrabhakarWalnutCreek,CAJohnandEllenStukenbergColumbus,OHSandyMadrigalDavenport,IARobert&ElizabethWeissWilmette,ILVeronicaTaylorHuntersville,NCEugeneR.
TempleDunedin,FLWaystoSupporttheFoundation'sWorkAllYearLongIfyouwishtosupporttheworkoftheFoundationinthebattleagainstMDS,pleaserememberusandconsiderdonatingallyearlong.
Everypennyhelps.
Alldonationsaretax-deductible.
TheMDSFoundationisverygratefulfortheheartfeltsupportofitsdonors.
Ourworkasanon-profitorganizationdependsonpublicfunding,andwehopethatyouincludeusasoneoftheworthycharitiesthatyousupportthisyear.
Wehaveenclosedapre-addressedcontributionenvelopetomakeiteasier.
YouwillreceiveanMDSFoundationenamellapelpininappreciationofyourdonation.
Thankyouforyoursupport.
GiftstotheFoundationTheMDSFoundationreliesentirelyongiftsandmembershipfeestofurtheritswork.
WewouldliketoacknowledgethegenerosityofthefollowingindividualsandorganizationsthathaverecentlyprovidedgiftstotheFoundation:ASpecialThankYoutoWewouldliketoespeciallythankGabrielle'sAngelFoundationforCancerResearchfortheirgenerousgrantintheamountof$45,000.
00insupportofyounginvestigatorsthroughtheMDSFoundation.
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ALivingEndowmentdonationhasbeenmadeinhonorof:BillandLizKindredThisdonationwassubmittedby:MarcellaCouturiauxWestIslip,NYALivingEndowmentdonationhasbeenmadeinhonorof:GordonShaferThisdonationwassubmittedby:GeoffandSandyGoldwormJupiter,FLALivingEndowmentdonationhasbeenmadeinhonorof:RobertArtanartes&FamilyThisdonationwassubmittedby:GeoffandSandyGoldwormJupiter,FLALivingEndowmentdonationhasbeenmadeinhonorof:FariborzGhadarThisdonationwassubmittedby:RobertJ.
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TheFoundation'sBoardofDirectorsJohnM.
Bennett,MDProfessorofMedicine,EmeritusLaboratoryMedicineandPathologyUniversityofRochesterMedicalCenterRochester,NewYork,U.
S.
A.
DavidT.
Bowen,MDConsultantHaematologistTheLeedsTeachingHospitalsLeedsGeneralInfirmaryLeeds,UnitedKingdomMarioCazzola,MDProfessorofHematologyUniversityofPaviaSchoolofMedicineHead,DepartmentofHematologyIRCCSPoliclinicoS.
MatteoPavia,ItalyTheoJ.
M.
deWitte,MD,PhDProfessorofHematologyUniversityMedicalCenterNijmegenSt.
RadboudNijmegen,TheNetherlandsElihuEstey,MDProfessor,DivisionofHematologyUniversityofWashingtonMedicalCenterMemberFredHutchinsonCancerResearchCenterSeattleCancerCareAllianceSeattle,Washington,U.
S.
A.
PierreFenaux,MDProfessorofHematologyHpitalAvicenneUniversityParis13Bobigny,FrancePeterL.
Greenberg,MDProfessorofMedicine/HematologyStanfordUniversitySchoolofMedicineStanford,California,U.
S.
A.
TerryHamblin,DM,FRCP,FRCPathProfessorofImmunohaematologySouthamptonUniversityBournemouth,UnitedKingdomEvaHellstrm-Lindberg,MD,PhDAssociateProfessorofHematologyKarolinskaInstitutetInstitutionforMedicineHuddingeUniversityHospitalStockholm,SwedenAlanF.
List,MDExecutiveVicePresidentPhysician-in-Chief,andMorsaniChairH.
LeeMoffittCancerCenter&ResearchInstituteTampa,Florida,U.
S.
A.
JohnMolle,CPAJRMFinancialAssociates,LLCFlemington,NewJersey,U.
S.
A.
GhulamJ.
Mufti,MDProfessorofHaemato-OncologyUniversityofLondonKing'sCollegeHospitalLondon,UnitedKingdomCharlotteM.
Niemeyer,MDProfessorofPediatricsUniversityChildren'sHospitalFreiburg,GermanyStephenD.
Nimer,MDHead,DivisionofHematologicOncologyMemorialSloan-KetteringCancerCenterNewYork,NewYork,U.
S.
A.
RobertJ.
Weinberg,Esq.
PepperHamiltonLLPPhiladelphia,Pennsylvania,U.
S.
A.
EmeritusMemberFranzSchmalzl,MDMDSFoundationInformationthemyelodysplasticsyndromesfoundation,inc.
TheMDSFoundationisapubliclysupportedorganization,exemptfromfederalincometaxundersection501(c)(3)oftheIRScode.