Survivorship! What does this mean for Patients with Bone ...assets.aamds.org/aplastic/files/dms/Sunday_SurvivorshipKeynote_R… · Of a “Cancer” Therapy Survivor Of a (i.e. breast,

1

Survivorship!What does this mean for Patients

with Bone Marrow Failure Diseases?

Survivorship!What does this mean for Patients

with Bone Marrow Failure Diseases?

American Society of HematologyState-of-the-Art SymposiumMonth Day, YearCity, State

American Society of HematologyState-of-the-Art SymposiumMonth Day, YearCity, State

Ruben A. Mesa, MDProfessor of MedicineMayo Clinic College of MedicineScottsdale, AZ, [email protected]

Ruben A. Mesa, MDProfessor of MedicineMayo Clinic College of MedicineScottsdale, AZ, [email protected]

July 12, 2009AA & MDS Patient Conference - Indianapolis

? Survivor Indianapolis?

SurvivorshipSurvivorship

•• What is “Survivorship”?What is “Survivorship”?

•• What Does it Mean for me be aWhat Does it Mean for me be aWhat Does it Mean for me be a What Does it Mean for me be a Survivor?Survivor?

•• How does being a survivor help me?How does being a survivor help me?

2

St. Peter’s Science Fair1982

“ the needs of the ti t fi t”

Charlie and Will Mayo

patient come first”

Mayo Clinic Rochester - June

3

Mayo Clinic Arizona - January

“Survivorship”“Survivorship”A definitionA definition

• SURVIVORSHIP• Noun

• 1. The right of a joint tenant, or g jother person who has a joint interest in an estate, to take the whole estate upon the death of other.

• 2. The state of being a survivor.

Webster’s Online Dictionary

• Survivor• Noun

• 1. One who lives through affliction; "the survivors of the fire were taken tothe survivors of the fire were taken to a hospital".

• 2. One who outlives another; "he left his farm to his survivors".

• 3. An animal that survives in spite of adversity; "only the fittest animals were survivors of the cold winters".

4

Traditional View of “Survivorship”Traditional View of “Survivorship”

DiagnosisOf a “Cancer”

Therapy

Survivor

Of a Cancer(i.e. breast, colon

Prostate, etc.) NoTherapy

Not aSurvivor

IllnessIllness Being WellBeing Well

Positive Spirit Promoting Wellness

Loving Support Being Active

Fighting Back

Good NutritionSleep

LIVING!

IllnessIllness Being WellBeing Well

Medical Treatments•Medicines•Surgery•Radiation•Other

PD CureMPD CureIronman Wisconsin 2008 - 140.6 miles dedicated to MPD Patients

Fundraiser for MPD Research and EducationMPD FoundationcMPD Education Foundation

M

5

MDS

Myeloproliferative DiseasesPMFAML

Overlapping Syndromes

MDS

PNHAplasticAnemia

NonMalignant

Adapted from Young NS et al, Ann Intern Med. 2002;136:534.

Diagnosis of

Observe

SupportCare

Diagnosis ofMDS/ AA/ PNH

TherapyFor

Control

Curative

Therapy

6

What is the science of “Survivorship”

The Changing The Changing Demography of Cancer Demography of Cancer

SurvivorshipSurvivorship

Over 80% of all cancer patients are Over 80% of all cancer patients are treated in the community treated in the community

Cancer for many may be viewed as a Cancer for many may be viewed as a “chronic” illness“chronic” illness

Cancer for most, affects the entire Cancer for most, affects the entire family, and often a communityfamily, and often a community

What is the Purpose of What is the Purpose of Cancer Survivorship Cancer Survivorship

Research?Research?Enhance the Enhance the lengthlength and and quality of survivalquality of survival

for all cancer patients for all cancer patients

Understand, prevent, or reduce theUnderstand, prevent, or reduce theUnderstand, prevent, or reduce the Understand, prevent, or reduce the adverse physiological, psychosocial, and adverse physiological, psychosocial, and economic sequelae associated with cancer economic sequelae associated with cancer and its treatment and its treatment

EEducateducate health professionals about issues health professionals about issues and practices critical to the optimal welland practices critical to the optimal well--being of their patients who have survived being of their patients who have survived cancercancer

7

Long Term and Late Long Term and Late Effects of Effects of

Cancer TreatmentCancer TreatmentPhysical/MedicalPhysical/Medical (e.g., second cancers, (e.g., second cancers,

cardiac dysfunction, pain, lymphedema, cardiac dysfunction, pain, lymphedema, sexual impairment) sexual impairment)

PsychologicalPsychological (e.g., depression, anxiety, (e.g., depression, anxiety, uncertainty, isolation, altered body uncertainty, isolation, altered body image) image)

KublerKubler--Ross’s Stages of CopingRoss’s Stages of Coping

•• Elisabeth KublerElisabeth Kubler--Ross published Ross published after interviews with 200 terminally ill after interviews with 200 terminally ill patients in 1969patients in 1969pp

•• DenialDenial•• AngerAnger•• BargainingBargaining•• DepressionDepression•• AcceptanceAcceptance

D i l Anger

Acceptance

KublerKubler--Ross’s Stages of CopingRoss’s Stages of Coping--ActualActual

Denial

Bargaining Depression

Anger

8

Long Term and Late Long Term and Late Effects of Effects of

Cancer TreatmentCancer Treatment

SocialSocial (e.g., changes in interpersonal (e.g., changes in interpersonal relationships, concerns regarding health relationships, concerns regarding health or life insurance, job lock/loss, return toor life insurance, job lock/loss, return toor life insurance, job lock/loss, return to or life insurance, job lock/loss, return to school, financial burden) school, financial burden)

ExistentialExistential and and SpiritualSpiritual Issues (e.g., Issues (e.g., sense of purpose or meaning, sense of purpose or meaning, appreciation of life)appreciation of life)

Impact of Adverse Impact of Adverse Disease and Treatment Disease and Treatment

OutcomesOutcomes

Cancer Survivorship, especially longCancer Survivorship, especially long--term, may act as a chronic stressorterm, may act as a chronic stressor

Variables affecting this chronic stress Variables affecting this chronic stress are multiare multi--faceted, integrated, and cross faceted, integrated, and cross various survivorship outcome domains various survivorship outcome domains

Impact of Adverse Impact of Adverse Disease and Treatment Disease and Treatment

OutcomesOutcomes

““Cure” has a cost Cure” has a cost –– damage to organ damage to organ systems, longsystems, long--term and late effects term and late effects

Therapies used against cancer can Therapies used against cancer can cause organ toxicity cause organ toxicity –– which might which might mmanifest as a wide array of chronic anifest as a wide array of chronic diseases that diseases that become clinically evident become clinically evident at different periods of a survivor's life at different periods of a survivor's life

9

Why Do We Need to be Cognizant of Why Do We Need to be Cognizant of this Issue?this Issue?

Lack of familiarity of primary care Lack of familiarity of primary care physicians or other specialists with physicians or other specialists with health risks of the heterogeneous health risks of the heterogeneous population of survivorspopulation of survivors

Lack of evaluation for late effects that Lack of evaluation for late effects that may be modifiable or amenable to early may be modifiable or amenable to early diagnosis and treatment prevent early diagnosis and treatment prevent early detection and appropriate management detection and appropriate management

Lessons Learned From Lessons Learned From Ongoing Research Ongoing Research

Adverse outcomes are chronic or late Adverse outcomes are chronic or late occurring, and more prevalent and serious than occurring, and more prevalent and serious than expected among survivors of both adult and expected among survivors of both adult and pediatric cancer pediatric cancer

The majority of individuals successfully The majority of individuals successfully treated for cancer report adequate to good treated for cancer report adequate to good healthhealth--related quality of life following treatment related quality of life following treatment —— Resilience! Resilience!

But…But…

10

Achieving the New Normal Achieving the New Normal –– What What are the Challenges and the Facilitators?are the Challenges and the Facilitators?

Challenges to Recovery Challenges to Recovery Physical Physical

Long Term and Late Effects of Long Term and Late Effects of Cancer and its Treatment Cancer and its Treatment

SymptomsSymptoms

Medical Sequelae Medical Sequelae

CoCo--MorbiditiesMorbidities

Challenges to Recovery Challenges to Recovery

Emotional Emotional Fear of Recurrence, Depression, Fear of Recurrence, Depression,

Uncertainty, Distress Uncertainty, Distress

SocioSocio--Economic Economic Isolation, Stigma, Altered Roles Isolation, Stigma, Altered Roles

(work, Family)(work, Family)

11

Risk Factors for Poor Risk Factors for Poor Outcomes Outcomes

MedicalMedical

More advanced disease More advanced disease -- intense or intense or i t t ti t t taggressive treatment aggressive treatment

Other/multiple coOther/multiple co--morbid medical morbid medical conditions conditions Poor doctor/patient relationshipPoor doctor/patient relationship

Risk Factors for Poor Risk Factors for Poor Outcomes Outcomes

Psychological / Personal Psychological / Personal Rigid coping style Rigid coping style Multiple social stressors; Low Multiple social stressors; Low

income/education income/education Poor marital/interpersonal Poor marital/interpersonal

l ti hil ti hirelationship relationship Younger ageYounger age

Social Social Lack of social support Lack of social support Limited access to service resources Limited access to service resources Cultural mores, Social stigmaCultural mores, Social stigma

Positive Response to Positive Response to Challenges Challenges

ResilenceResilence

CopingCoping

Health and Help Seeking BehaviorHealth and Help Seeking Behavior

Benefit Finding (PostBenefit Finding (Post--Traumatic Traumatic Growth)Growth)

12

Factors Associated with Factors Associated with Good HRQOL Outcomes Good HRQOL Outcomes Access to (State of the art?) Care Access to (State of the art?) Care

Having (and using) a social support network Having (and using) a social support network

C i d AdjC i d AdjCoping and AdjustmentCoping and Adjustment

Being an active participant in one’s care (and Being an active participant in one’s care (and one’s health behaviors!) one’s health behaviors!)

Finding or having a sense of purpose or Finding or having a sense of purpose or meaning in one’s lifemeaning in one’s life

Unanswered Questions Unanswered Questions and Future Research and Future Research

•• Examining Examining

Emerging Late and LongEmerging Late and Long--Term Effects of Term Effects of cancer and its treatmentcancer and its treatment

Examining the Barriers and Facilitators that Examining the Barriers and Facilitators that affect achievement of the “New Normal”affect achievement of the “New Normal”

Are there ways one might go back to the “old” Are there ways one might go back to the “old” normal?? normal??

13

Continuing Scientific NeedsContinuing Scientific NeedsWhy is this information important?Why is this information important?Prevent, detect early, or intervene (medical, Prevent, detect early, or intervene (medical, behavioral) to decrease morbidity and mortalitybehavioral) to decrease morbidity and mortality

Guide followGuide follow--up care and practice up care and practice

Consonant with our overall missions as Consonant with our overall missions as scientists and care providers scientists and care providers –– This is what we This is what we are here to do!are here to do!

Reduce the burden of cancerReduce the burden of cancer--related related illnessillness

How does survivorship relate to Bone Marrow Failure Diseases?

MDS and AAMDS and AASpanning a SpectrumSpanning a Spectrum

Young Old

Feel WellFeel Lousy

Severe Mild

Treatment None

Curable Treatable

14

Challenges for AA/MDS/PNH PatientsChallenges for AA/MDS/PNH PatientsMedicalMedical

•• Side effects of low blood countsSide effects of low blood counts

•• Side effects of treatmentsSide effects of treatmentsSide effects of treatmentsSide effects of treatments

•• Risk of disease progressionRisk of disease progression

Challenges for AA/MDS/PNH PatientsChallenges for AA/MDS/PNH PatientsNonNon--MedicalMedical

•• Financial Challenges of care or RxFinancial Challenges of care or Rx

•• Stress of uncertainty with futureStress of uncertainty with futureStress of uncertainty with futureStress of uncertainty with future

•• Confusion over your illness with Confusion over your illness with friends and familyfriends and family

15

What Tools can help YOU be a Survivor?

• Knowledge

• Partnership with your healthcare team

• Physical “Wellness”

• Emotional “Wellness”

Knowledge as a weapon

• Learning more about your disease

• Learning about what to expect in your futurefuture

• Teaching those around you in your circle

• Advocating on behalf of other patients with your disease

16

WWW.aamds.org

• Disease Information• Are you a newly diagnosed patient? Call our toll-free Helpline to learn more

about your disease and treatment options. Call 800.747.2820 in the United States or call 301.279.7202 outside the United States.A new diagnosis - or the ongoing challenge - of bone marrow failure raises many questions for you and your loved ones. To give you answers, we provide a wide range of information to assist you in managing your illness. Please take a moment to join us and advance our ability to provide hope, information and life-saving support.

fAbout the DiseasesDrug InformationEducational MaterialsFind an ExpertAsk The ExpertsQ&A LibraryResources DirectoryNewsletter / eBulletins


• Knowledge




THE MEDICAL INTERVIEW

• THE MOST COMMON PROCEDURE, • >100-200,000 scheduled visits,

plus bedside, informal, family, telephone interactionstelephone interactions

• BASIS OF ALL CLINICAL WORK• acute and chronic, birth to death• activities of curing, caring,

changing lifestyles, prevention

17

New words

CHURCHILL

“I'M ALWAYS READY TO LEARN, ALTHOUGH I DO NOT ALWAYS LIKEALTHOUGH I DO NOT ALWAYS LIKE

BEING TAUGHT.”

“D t ’ ld f hi d“Doctor’s old fashionedrole as a listener is making a comeback”

18

Information flow

What I say What I hear

Patient Physician

What I understand

or mean

What I understand

or meanBridge

What I hear What I say

Ask-Tell-Ask

• (Ask) About diagnosis, reason for biopsy, test, etc.

• (Tell) In simple language what you understand(A k) Cl if i i• (Ask) Clarifying questions

• (Tell) Your understanding, etc.• (Ask)………….

• Continue until feel adequate info.

19


• Knowledge




FACT-An Mean (SD)

Godin LAS

P Value Compared to

Controls

Disease N BFI Mean (SD)

BFI FACT-An Controls (BFI) 275 2.2 (1.80) ---- ---- ---- ---- Controls (FACT-An) 1078 ---- 77.1 (19.9) ---- ---- ---- Controls (Godin LAS) 306 ---- ---- 45.8 ---- ----

MPD Patients (All) 1158 4.9 (2.42) 47.3 (19.03) 25.2 (24 8)

<0.0001 <0.0001 (24.8)

Essential Thrombocythemia 300 4.4 (2.28) 51.6 (17.64) 27.5 (22.7)

<0.0001 <0.0001

Polycythemia Vera 397 5.1 (2.45) 46.5 (19.82) 25.9 (26.1)

<0.0001 <0.0001

Myelofibrosis with Myeloid Metaplasia

450 5.2 (2.42) 45.5 (18.79) 23.1 (24.8)

<0.0001 <0.0001

Mesa et. al. Cancer 2007;109:

Fatigue also an issue in “asymptomatic” Fatigue also an issue in “asymptomatic” patientspatients

•• 279 “Asymptomatic”279 “Asymptomatic”•• No anemia, clots, non aspirin No anemia, clots, non aspirin

meds, splenomegalymeds, splenomegaly•• PV 42% ET 31% PMF 27%PV 42% ET 31% PMF 27%•• PV 42%, ET 31%, PMF 27%PV 42%, ET 31%, PMF 27%

•• Over 70% self report fatigueOver 70% self report fatigue•• Worse than published “norms”Worse than published “norms”•• 3% medically disabled only 3% medically disabled only

from fatiguefrom fatigue

20

Exercise Activities in 1179 MPD Patients

70.8%

40.0%

60.0%

80.0%

100.0%

1.9% 3.0% 3.8% 4.3% 6.4% 7.5% 8.3%14.6%16.7%

21.5%

0.0%

20.0%

Team Sports

Raquet Sports

Pilates

Step Mach

ines

Jogging/Running

Elliptica

lYoga

SwimmingCycl

ing

Weights

Walking

Mesa et. al. Cancer 2007;109:68-7

Main Obstacle to Exercise in MPD Patients

85.8%

60.0%

80.0%

100.0%

10.0% 11.8%14.6%

19.2% 20.7%

30.0%

36.2%

0.0%

20.0%

40.0%

Splenic Sx Pain (Arms) Other Neuropathy Pain (Back) Pain (Legs) Dyspnea Fatigue

Mesa et. al. Cancer 2007;109:68-7

What do we mean by QOL?What do we mean by QOL?

•• While QOL is to large extent in the While QOL is to large extent in the eye of the beholder, it is generally eye of the beholder, it is generally considered to have several domains:considered to have several domains:

Presence and Severity of Symptoms

Ability to Function

Quality of Interpersonal Interactions

Sense of Well-Being

Transcendence

Physical

Social

Psychological

Emotional

Intellectual

Spiritual

21

Internet Based Quality of Life Study in 359 MDS PatientsInternet Based Quality of Life Study in 359 MDS Patients

Patient RecruitmentPatient Recruitment••Mayo Clinic MDS PatientsMayo Clinic MDS Patients••MDS Foundation Centers of ExcellenceMDS Foundation Centers of Excellence

MDS Health-Related QOL Study

MDS Foundation Centers of ExcellenceMDS Foundation Centers of Excellence••MDS Foundation and CMPD Foundation webpagesMDS Foundation and CMPD Foundation webpages

••AdministrationAdministration••Internet alone Internet alone -- anonymousanonymous


Survey ContentSurvey Content••DemographicsDemographics••MDS Features (subtype, treatments, blood counts)MDS Features (subtype, treatments, blood counts)CC M biditi (Ch l I d )M biditi (Ch l I d )

MDS Health-Related QOL Study

••CoCo--Morbidities (Charlson Index)Morbidities (Charlson Index)

••Validated QOL InstrumentsValidated QOL Instruments••Brief Fatigue InventoryBrief Fatigue Inventory••FACTFACT--ANAN••Godin Leisure Time Activity Score (LAS)Godin Leisure Time Activity Score (LAS)

Steensma DP, Heptinstall KV et al Leuk Res 2008; 32:691-8

22


ResultsResults••Most MDS patients have a reduced QOL and a significant Most MDS patients have a reduced QOL and a significant symptom burdensymptom burden••90% of survey respondents complained of “excessive” fatigue90% of survey respondents complained of “excessive” fatigue••QOL worse than published controls for both validated instruments (P<0.0001)QOL worse than published controls for both validated instruments (P<0.0001)

••Does Fatigue Correlate With Anemia?Does Fatigue Correlate With Anemia?••Fatigue levels were independent of:Fatigue levels were independent of:

••Hemoglobin levelsHemoglobin levels••Transfusion DependenceTransfusion Dependence••Not explained by coNot explained by co--morbiditiesmorbidities

Some Specific Issues Facing Some Specific Issues Facing Patients With MDS (1)Patients With MDS (1)

•• Fatigue Fatigue •• Specific symptoms related to Specific symptoms related to low blood countslow blood counts

•• shortness of breath, palpitations, leg shortness of breath, palpitations, leg swelling; recurrent infections; bleeding/easy swelling; recurrent infections; bleeding/easy bruisingbruising

•• Specific symptoms related to Specific symptoms related to treatmentstreatments•• Nausea/vomiting, poor appetite, rash, Nausea/vomiting, poor appetite, rash,

soreness at injection sites, catheter issuessoreness at injection sites, catheter issues•• Inconvenience of doctor visits and treatmentsInconvenience of doctor visits and treatments•• Financial challenges related to health care and Financial challenges related to health care and

loss of incomeloss of income

Some Specific Issues Facing Some Specific Issues Facing Patients With MDS (2)Patients With MDS (2)

•• UncertaintyUncertainty about the futureabout the future•• Worries about family (e.g., their coping), job/companyWorries about family (e.g., their coping), job/company•• Worries about paying the billsWorries about paying the bills•• Worries about being a burdenWorries about being a burden•• Worries about what else the disease will do… the Worries about what else the disease will do… the

indignityindignity•• Existential concernsExistential concerns•• Existential concernsExistential concerns

•• People treat you differently than they did beforePeople treat you differently than they did before•• Difficulty sleeping, restless legs Difficulty sleeping, restless legs –– can lead to can lead to

irritability/poorer coping with stress, conflict with partnerirritability/poorer coping with stress, conflict with partner•• Fears related to intimacy, changes in sexual performanceFears related to intimacy, changes in sexual performance•• Having to cut back on, or being unable to participate in, Having to cut back on, or being unable to participate in,

things you enjoythings you enjoy

23

What more can I do to feel better?What more can I do to feel better?

…Medications are frequently …Medications are frequently not enoughnot enough

GoalsGoals

•• OptimizeOptimize•• FlexibilityFlexibility•• Heart/ lung functionHeart/ lung function•• Muscle toneMuscle tone•• Improve strengthImprove strength•• Improve sleepImprove sleep•• Improve fatigueImprove fatigue

24

Range of NeedsRange of Needs

•• Early stage:Early stage:•• Define limitations (or perceived limitations)Define limitations (or perceived limitations)•• Needs may mirror those of all adultsNeeds may mirror those of all adults

•• Moderate stages:Moderate stages:•• Overcoming barriers related to diseaseOvercoming barriers related to disease•• Overcoming medication side effectsOvercoming medication side effects

•• Advanced stage:Advanced stage:•• Maximize mobilityMaximize mobility•• Maximize flexibilityMaximize flexibility

Evans et. al. Oncology 2002;16 (9 Suppl 10):109-115


25

Vicious CycleVicious Cycle

FatigueFatigue

Loss ofLoss of

DeconditioningDeconditioning

Loss ofLoss ofMuscleMuscle BeingBeing

SedentarySedentary

EvidenceEvidence

•• Rehabilitation for “Cancer” patientsRehabilitation for “Cancer” patients•• Correcting anemiaCorrecting anemia•• Aerobic conditioning to improve VO2 MaxAerobic conditioning to improve VO2 Max•• Progressive resistance exercisesProgressive resistance exercises

•• Improves fatiguesImproves fatigues•• Decreases muscles wastingDecreases muscles wasting


Exercise During Chemo for Exercise During Chemo for Hematologic MalignancyHematologic Malignancy

•• Treadmill walking program beginning the day Treadmill walking program beginning the day after completing chemotherapyafter completing chemotherapy

•• Daily during hospitalizationDaily during hospitalization•• Patients were able to maintain physical Patients were able to maintain physical

performance despite hospitalization (mean of 30 performance despite hospitalization (mean of 30 days (10days (10--49)49)

Dimeo et. al. Support Care Cancer 2003;11:623

26

Dimeo et. al. Support Care Cancer 2003;11:623

Exercise during Exercise during Stem Cell TransplantStem Cell Transplant

•• Hayes et. al. BMT 2004;33:553Hayes et. al. BMT 2004;33:553--555555•• Randomized trial between exerciseRandomized trial between exercise

•• Moderate intensity 20Moderate intensity 20--40 minutes 3x/week (mixed)40 minutes 3x/week (mixed)•• Control groupControl group

St t hiSt t hi•• StretchingStretching•• Exercise improved QOL (by metrics) prior to Exercise improved QOL (by metrics) prior to

transplant (P<0.01)transplant (P<0.01)•• Better QOL metrics in intervention group Better QOL metrics in intervention group

(P<0.05)(P<0.05)

Hayes et. al. BMT 2004;33:553Hayes et. al. BMT 2004;33:553--555555

27

Aerobic Capacity and QOLAerobic Capacity and QOL

Hayes et. al. BMT 2004;33:553Hayes et. al. BMT 2004;33:553--555555


• Knowledge




28

The challengeThe challengeRealistic hope/faith

DenialFatalism

RecognizingRecognizing

•• PhysicalPhysical•• FatigueFatigue•• PainPain•• Med side effectsMed side effects

•• EmotionalEmotional•• LonelinessLoneliness•• DepressionDepression•• FrustrationFrustration

•• InsomniaInsomnia•• etcetc

•• ConflictConflict•• IsolationIsolation•• Etc.Etc.

The goalThe goal

Mrs. B’s journal

29

“In 5 years we will have regrets and remorse for the things gwe did not do, rather than what we did.”

30

What have I learned?What have I learned?

•• Don’t wait to go to AlaskaDon’t wait to go to Alaska

The Race (with No Finish Line)The Race (with No Finish Line)

Medicines

Surgery

Transplant

Illness Wellness

Exercise

Spirituality

Family Nutrition

Quotes from Erma BombeckQuotes from Erma BombeckWritten as she was dying from CancerWritten as she was dying from Cancer

•• If I had my life to live over I would…If I had my life to live over I would…

•• Have gone to bed when I was sick Have gone to bed when I was sick instead of pretending the earth would instead of pretending the earth would go into a holding pattern if I weren’t go into a holding pattern if I weren’t there for a daythere for a day

31

I would have...I would have...

••Burned the pink candle Burned the pink candle sculpted like a rose before it sculpted like a rose before it melted in storagemelted in storage


••Sat on the lawn with my grass Sat on the lawn with my grass stainsstains


••Talked less and listened moreTalked less and listened more

32


•• Invited friends over to dinner Invited friends over to dinner even if the carpet was stained even if the carpet was stained or the sofa fadedor the sofa faded


••Shared more of the Shared more of the responsibility carried by my responsibility carried by my husbandhusband


••Never have insisted the car Never have insisted the car windows be rolled up on a windows be rolled up on a summer day because my hair summer day because my hair had just been teased and had just been teased and sprayedsprayed

33


••Don’t worry about who Don’t worry about who doesn’t like you, who has doesn’t like you, who has more or who is doing what. more or who is doing what. Instead, cherish the Instead, cherish the relationships we have with relationships we have with those who do love us.those who do love us.


••Never have bought anything Never have bought anything just because it was practical, just because it was practical, wouldn’t show soil, or was wouldn’t show soil, or was guaranteed to last a lifetimeguaranteed to last a lifetime


•• Instead of wishing away nine Instead of wishing away nine months of pregnancy, I’d months of pregnancy, I’d have cherished every moment have cherished every moment and realized that the and realized that the wonderment growing inside wonderment growing inside me was the only chance in life me was the only chance in life to assist God in a miracleto assist God in a miracle

34


••Taken the time to listen to my Taken the time to listen to my grandfather ramble about his grandfather ramble about his youthyouth


••Cried and laughed less while Cried and laughed less while watching TV and more while watching TV and more while watching lifewatching life


••But mostly, given another But mostly, given another shot at life, I would seize shot at life, I would seize every minute… look at it and every minute… look at it and really see it… live it and never really see it… live it and never give it back. Stop sweating give it back. Stop sweating the small stuff.the small stuff.

35

Carpe DiemCarpe Diem

Seize the day!Seize the day!

Mayo ClinicMayo ClinicGenerations of MPD FocusGenerations of MPD Focus

ona

nvill

e

Dr Solberg

Dr. Silverstein Dr. Petit

Ariz

o

Dr. Camoriano

Dr. Slack

Jack

son Dr. Solberg

Dr. Rivera

Dr. Moreno-Aspitia

RochesterDr. Hanson Dr. Li

AcknowledgementsAcknowledgements•• MD Anderson Cancer CenterMD Anderson Cancer Center

••S. VerstovsekS. Verstovsek••J. CortesJ. Cortes••C. TamC. Tam••H. KantarjianH. Kantarjian

•• DFCIDFCI--BostonBoston••Martha WadleighMartha Wadleigh••D. Gary GillilandD. Gary Gilliland

•• CornellCornell--WeillWeill••R. SilverR. Silver

•• MSKCCMSKCC••R. LevineR. Levine

•• Mt. SinaiMt. Sinai••R. HoffmanR. Hoffman

•• StanfordStanford

MPD Research Alliance

Mayo - Mt. Sinai - Harvard

International Colleagues••J. ThieleJ. Thiele••H.M. KvasnickaH.M. Kvasnicka••T. BarbuiT. Barbui••G. FinazziG. Finazzi••A. VannucchiA. Vannucchi••G. BarosiG. Barosi••F. CervantesF. Cervantes••J.T. ReillyJ.T. Reilly••P. CampbellP. Campbell••B DupriezB DupriezStanfordStanford

••J. GotlibJ. Gotlib•• U. of ChicagoU. of Chicago

••J. VardimanJ. Vardiman••T. OdenikeT. Odenike

•• U. of IndianaU. of Indiana••A. OraziA. Orazi

CMPD EDUCATION FOUNDATION

B. DupriezB. Dupriez

Documents

Survivorship! What does this mean for Patients with Bone ...assets.aamds.org/aplastic/files/dms/Sunday_SurvivorshipKeynote_R… · Of a “Cancer” Therapy Survivor Of a (i.e. breast,