Practical challenges after Practical challenges after transplant transplant
Suzanne LiebersbachSuzanne LiebersbachClinical nurse specialistClinical nurse specialist
Leeds Leeds UK UK
[email protected]@leeedsth.nhs.uk
Cancer survivors reportCancer survivors report
Unprepared/unaware what lies ahead Unprepared/unaware what lies ahead Need advice effects of cancer/treatmentNeed advice effects of cancer/treatment
body image/libidobody image/libido long term follow up issues long term follow up issues benefits/ returning to workbenefits/ returning to work
Compare life before and after Compare life before and after ‘ ‘new normal’new normal’ difficult to prepare patientdifficult to prepare patient
Cancer survivorshipCancer survivorship
Currently 2 million people in UK living with Currently 2 million people in UK living with and beyond cancerand beyond cancer expected to grow by over 3% per year. expected to grow by over 3% per year.
Reflects the increasing incidence of Reflects the increasing incidence of cancer and increased survival rates. cancer and increased survival rates.
National cancer survivorship initiative National cancer survivorship initiative improving the services and support for improving the services and support for
people living with and after cancer people living with and after cancer
www.ncsi.org.uk/www.ncsi.org.uk/
Challenges after transplantChallenges after transplant
Physical challengesPhysical challenges immune system recoveryimmune system recovery bone healthbone health risk of secondary cancers risk of secondary cancers
Practical challenges post transplant Practical challenges post transplant travel and insurancetravel and insurance returning to workreturning to work benefitsbenefits
Bone healthBone health
Loss of bone density after transplant Loss of bone density after transplant previous chemotherapyprevious chemotherapy steroids steroids
dose and length of time dose and length of time 30 - 50% >1 year = osteoporosis30 - 50% >1 year = osteoporosis
Most at risk: Women - low body weight & physically Most at risk: Women - low body weight & physically inactiveinactive
www.nos.org.uk/www.nos.org.uk/ 0845 45902300845 4590230
What factors affect bone What factors affect bone health? health?
Menopause -reduced oestrogenMenopause -reduced oestrogen Diets low in calcium and vitamin DDiets low in calcium and vitamin D Smoking/Ciclosporin/AlcoholSmoking/Ciclosporin/Alcohol
effect building mechanisms of the bone effect building mechanisms of the bone Age - bone density decreases with age Age - bone density decreases with age Family history of osteoporosis (80% genetic)Family history of osteoporosis (80% genetic)
Bone scan at 1 year post transplantBone scan at 1 year post transplant individualised follow up individualised follow up
Preventative measuresPreventative measures
Maintain/improve bone densityMaintain/improve bone density 3-5 per week regular weight bearing activity 3-5 per week regular weight bearing activity
brisk walking, aerobics , climbing stairs brisk walking, aerobics , climbing stairs
healthy lifestyle/diet healthy lifestyle/diet oestrogen replacement in women < 51yrsoestrogen replacement in women < 51yrs testosterone replacement in deficient mentestosterone replacement in deficient men medication medication
bisphosphonates bisphosphonates calcium/vitamin Dcalcium/vitamin D
Vitamin D Vitamin D Main source from sunlightMain source from sunlight Potential consequences of low vitamin D Potential consequences of low vitamin D
muscle weakness muscle weakness bone tenderness bone tenderness
May help to prevent diabetes/↑ blood pressure and May help to prevent diabetes/↑ blood pressure and cardiovascular disease cardiovascular disease
DifficultiesDifficulties lack of sun/sunburnlack of sun/sunburn trapped in fat cellstrapped in fat cells darker skin requires longer exposure darker skin requires longer exposure
Pigment melanin - ↓ skins ability to make Pigment melanin - ↓ skins ability to make vitamin Dvitamin D
Vitamin D replacementVitamin D replacement
Natural sources – animal basedNatural sources – animal based fish, egg yolks, cheese, fortified milk, beef fish, egg yolks, cheese, fortified milk, beef
and liver.and liver. SupplementationSupplementation
prescription prescription chemist (400iu/10micrograms)chemist (400iu/10micrograms) Avoid cod liver oil – Vitamin A contentAvoid cod liver oil – Vitamin A content
www.nos.org.uk/www.fhcrc.org/en/treatment/survivorship/survivalstrategies/
vitamin-d.html
Cardiac and Vascular Cardiac and Vascular complicationscomplications
Transplant patients are at a higher risk of Transplant patients are at a higher risk of cardiovascular complicationscardiovascular complications
2-3 times more likely than age matched general 2-3 times more likely than age matched general population population
raised blood pressureraised blood pressure raised cholesterol raised cholesterol
www.bhf.co.org.ukwww.bhf.co.org.uk
How to help your heart!How to help your heart! Management focuses on risk factors and education Management focuses on risk factors and education
smokingsmoking dietdiet blood pressure blood pressure exerciseexercise cholesterol cholesterol diabetesdiabetes family historyfamily history
genetic/lifestylegenetic/lifestyle
This can be done at general practice This can be done at general practice well woman/man clinicswell woman/man clinicsannual basisannual basis
Benefits of exerciseBenefits of exercise
Decrease stressDecrease stress Lessen fatigue/Improve sleep Lessen fatigue/Improve sleep Slow or stop muscle lossSlow or stop muscle loss Increase range of motion and mobilityIncrease range of motion and mobility
graft versus host diseasegraft versus host disease Improve mental healthImprove mental health
DoH- Quality of life of cancer survivors 2012DoH- Quality of life of cancer survivors 2012www.dh.gov.uk/health/2012/12/cancer-proms/
Exercise difficultiesExercise difficulties Muscle weakness caused by steroidsMuscle weakness caused by steroids Fatigue/ lack of sleep Fatigue/ lack of sleep UnwellUnwell Recommended during and early after treatment Recommended during and early after treatment
most difficult time! most difficult time!
Community exercise programmes:Community exercise programmes:what we have now what we have now
Existing programmes target a different populationExisting programmes target a different population weight management weight management cardiac rehabilitationcardiac rehabilitation smoking cessationsmoking cessation
Some areas may have local programmesSome areas may have local programmes
CommunityCommunity Staff generally not trained to care for cancer survivors Staff generally not trained to care for cancer survivors High impact programmes inappropriate early post-High impact programmes inappropriate early post-
transplant transplant Low impact programmes may not address needs Low impact programmes may not address needs
Community exercise programmes:Community exercise programmes:what we need what we need
Low impact & high impact programmes specific Low impact & high impact programmes specific for clients needsfor clients needs peer support peer support staff adequately trained ( level 3)staff adequately trained ( level 3)
New initiative: Macmillan & local authorities New initiative: Macmillan & local authorities developing exercise programmes/classes for developing exercise programmes/classes for cancer survivors at every leisure centre UKcancer survivors at every leisure centre UK
www.changeforlife.comwww.changeforlife.com
Ways to increase exercise What did you do before? 30 minutes a day get your heart rate up30 minutes a day get your heart rate up
use stairs, house work, gardening use stairs, house work, gardening ‘ ‘get active, feel good’ get active, feel good’
www.macmillan.org.uk/Cancerinformation/www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Physicalactivity/Livingwithandaftercancer/Physicalactivity/Physicalactivity.aspxPhysicalactivity.aspx
What is my risk of secondary What is my risk of secondary cancers after transplant?cancers after transplant?
Due to exposure to radiotherapy and Due to exposure to radiotherapy and chemotherapy chemotherapy
2-3 x more likely to develop a secondary cancer2-3 x more likely to develop a secondary cancer
smoking (36 x) smoking (36 x) unhealthy diet/ over weight (4x) unhealthy diet/ over weight (4x)
Advice is the same as general populationAdvice is the same as general population Reduce risk by detecting earlyReduce risk by detecting early
Reduce risk and detect earlyReduce risk and detect early Colon - change in bowel habit/bloodColon - change in bowel habit/blood Mouth- dentist Mouth- dentist Smears Smears Breast- self examination/screening programmeBreast- self examination/screening programme
Total body irradiation ?Total body irradiation ? www.nationalbreastcancer.org/breast-self-examwww.nationalbreastcancer.org/breast-self-exam
Maintain normal weight Maintain normal weight Know your family historyKnow your family history Skin- irregular molesSkin- irregular moles
www.skincancer.org/skin-cancer-information/early-detection
Testes- self examinationTestes- self examination www.cancer.org/cancer/testicularcancer/moreinformation/www.cancer.org/cancer/testicularcancer/moreinformation/
doihavetesticularcancer/do-i-have-testicular-cancer-self-examdoihavetesticularcancer/do-i-have-testicular-cancer-self-exam
Infection risks increased- why?Infection risks increased- why?Immuno-suppressive drugs e.g. steroidsImmuno-suppressive drugs e.g. steroidsGraft versus host diseaseGraft versus host diseaseSlow immune system recovery Slow immune system recovery
1-2 years?1-2 years? some may never fully recoversome may never fully recover
Spleen may not function normallySpleen may not function normally
Reduce your infection risk!Reduce your infection risk!Don’t smokeDon’t smokeConsider taking penicillin V life longConsider taking penicillin V life longKnow your own infection historyKnow your own infection historyBe alert to symptoms and seek helpBe alert to symptoms and seek helpEmergency antibiotic stockEmergency antibiotic stock
understand drug and what its for!!understand drug and what its for!!Good relationship with GP (and Good relationship with GP (and
receptionist!!)receptionist!!)Get vaccinatedGet vaccinated
Vaccinations after transplant Vaccinations after transplant Our guidelines have been adapted for the UK Our guidelines have been adapted for the UK
from the international guidelines from the international guidelines can be found on allinex websitecan be found on allinex website www.allinex.orgwww.allinex.org
6-12 months after transplant6-12 months after transplant restart as if childhood restart as if childhood Annual flu Annual flu
immune response to vaccines may be impaired immune response to vaccines may be impaired Boosters likelyBoosters likely
Travel- vaccinationsTravel- vaccinations
Vaccinations as per recommendations for Vaccinations as per recommendations for countrycountry immune response to vaccines may be immune response to vaccines may be
impaired impaired immune recovery may be slowimmune recovery may be slow corticosteroidscorticosteroids
Practice nurse/travel clinic/transplant team Practice nurse/travel clinic/transplant team Risk vs benefit Risk vs benefit
www.fitfortravel.nhs.uk/ www.nathnac.org/travel/traveladvice.htm
MalariaMalaria No anti malaria tablets provide total protectionNo anti malaria tablets provide total protection
parasite multiplies faster in patients with parasite multiplies faster in patients with reduced immune functionreduced immune function
cover up and use repellent cover up and use repellent mosquito netmosquito net
Areas less at risk?Areas less at risk?
Travel - GeneralTravel - General
Recommend UK only up to 1 year post transplantRecommend UK only up to 1 year post transplant GvHDGvHD ↑ ↑ infection riskinfection risk
Immune systemImmune system flightflight swimmingswimming medical supportmedical support
Take extra medication in case of delaysTake extra medication in case of delays original packagingoriginal packaging keep bulk in suitcasekeep bulk in suitcase ? antibiotics? antibiotics consultant letterconsultant letter
Travel - sunTravel - sun
Sun exposure can cause GvHD to flareSun exposure can cause GvHD to flare GvHD can destroy the sweat glandsGvHD can destroy the sweat glands
less able to tolerates heat less able to tolerates heat
SunscreenSunscreenSun protecting clothingSun protecting clothing
www.sunprecautions.com/www.sunprecautions.com/www.equatorsun.com/www.equatorsun.com/www.sports-sunglasses-eyewear.co.uk/html/www.sports-sunglasses-eyewear.co.uk/html/
windproof_eyewear.htmlwindproof_eyewear.html
Getting Insurance!Getting Insurance!
Cancer usually deemed as a pre existing Cancer usually deemed as a pre existing conditioncondition
Individual companies will have a different Individual companies will have a different view of the increased risk you represent view of the increased risk you represent
Likelihood of you cancelling holiday is a Likelihood of you cancelling holiday is a major factor whether they will cover you major factor whether they will cover you
Where you are going?Where you are going?USA expensive USA expensive
Getting InsuranceGetting Insurance
European health insurance card ( EHIC)European health insurance card ( EHIC)treatment in the same way as resident of that treatment in the same way as resident of that
countrycountry Be prepared for difficult questionsBe prepared for difficult questions Have information at the readyHave information at the ready Search for a couple at a time Search for a couple at a time expect high quote – not always relative to your expect high quote – not always relative to your
personal circumstancespersonal circumstances keep trying!!! keep trying!!!
Macmillan website Macmillan website
Returning back to workReturning back to work
Ready physically and emotionally?Ready physically and emotionally? Vulnerable timeVulnerable time
skills lost/skills needed/confidence skills lost/skills needed/confidence
2010 equality act2010 equality act employer cannot discriminate against you employer cannot discriminate against you
because you have cancerbecause you have cancer legally obliged to make reasonable legally obliged to make reasonable
adjustments to help you do your job adjustments to help you do your job
Returning to workReturning to work
Disability employment advisor based at main job Disability employment advisor based at main job centrescentres reduce stress of searching for workreduce stress of searching for work correct benefits correct benefits help with retraining for new job or existinghelp with retraining for new job or existing liaise with manager suitable work alternative liaise with manager suitable work alternative
Macmillan tool kit for employers and employees Macmillan tool kit for employers and employees http://www.macmillan.org.uk/Documents/GetInvolved/http://www.macmillan.org.uk/Documents/GetInvolved/
Campaigns/WorkingThroughCancer/WorkItOut/WorkItOutPart2.pdfCampaigns/WorkingThroughCancer/WorkItOut/WorkItOutPart2.pdf
Returning to workReturning to work
Start to think early onStart to think early on flexible working arrangementsflexible working arrangements shorter hours/phased returnshorter hours/phased return change of employmentchange of employment
Communicate with managers earlyCommunicate with managers early attending clinic appointments/sicknessattending clinic appointments/sickness
BenefitsBenefits
Where to find out what you are entitled tooWhere to find out what you are entitled too social worker – some do not deal with social worker – some do not deal with
benefitsbenefits welfare rights officerwelfare rights officer Macmillan supportMacmillan support citizens advice bureaucitizens advice bureau
May change over timeMay change over time blue badge scheme blue badge scheme
Know when they run out/prepare ahead Know when they run out/prepare ahead
Benefit changesBenefit changes
Job seekers now ESA (employment Job seekers now ESA (employment support allowance)support allowance)
Disability living allowance- PIP (personal Disability living allowance- PIP (personal independence payments)independence payments) may take 5 yrs to be fully implementedmay take 5 yrs to be fully implemented point scheme – physical care and mobilitypoint scheme – physical care and mobility PIP tool kit – PIP tool kit – www.dwp.gov.ukwww.dwp.gov.uk www.gov.uk/www.gov.uk/
ServicesServices
‘‘Moving on’ ‘look good feel better’Moving on’ ‘look good feel better’Step down programmes- usually 6 week Step down programmes- usually 6 week
programmeprogramme
Find out what’s available in your areaFind out what’s available in your area Needs may change over time Needs may change over time Support groups/Peer support Support groups/Peer support Psychological issues/supportPsychological issues/support
recognise signs of not copingrecognise signs of not coping
Cancer survivors needsCancer survivors needs
Information on the long-term effects of Information on the long-term effects of living with and beyond treatment living with and beyond treatment
Individual assessment and care planningIndividual assessment and care planningAccess/referral to specialist medical care Access/referral to specialist medical care Advice on returning to work and benefitsAdvice on returning to work and benefitsSupport to self-manage your conditionSupport to self-manage your conditionAccess and information about support Access and information about support
services services
Useful informationUseful information
National marrow donor programme-APP www.cancer.netwww.cancer.net
Sleep and fatigueSleep and fatigue www.macmillan.org.uk/www.macmillan.org.uk/ www.nhs.uk/www.nhs.uk/ www.patient.co.uk/health/cramps-in-the-legwww.patient.co.uk/health/cramps-in-the-leg
crampscramps www.adviceguide.org.uk/ www.adviceguide.org.uk/
Welfare rightsWelfare rights Cancer survivor's companion - available from amazon Cancer survivor's companion - available from amazon
BenefitsBenefits
Macmillan benefits advisor 0808 808 0000 Mon – Fri 9-Macmillan benefits advisor 0808 808 0000 Mon – Fri 9-8pm 8pm
Macmillan support line 0808 808 0000Macmillan support line 0808 808 0000 Macmillan.org.uk/benefits advisors Macmillan.org.uk/benefits advisors Benefit enquiry line 0800 882 200Benefit enquiry line 0800 882 200
www.gov.uk/browse/benefitswww.gov.uk/browse/benefits www.citizinsadvice.co.uk/getadvice/benefit/calculatorwww.citizinsadvice.co.uk/getadvice/benefit/calculator
Turn 2 usTurn 2 us
Grants and support availableGrants and support available Assistance with debts caused by illnessAssistance with debts caused by illness Buying item specific for illness Buying item specific for illness
blender if need soft diet blender if need soft diet washing machine washing machine new mattress new mattress
www.turn2us.comwww.turn2us.com
Any questions?Any questions?
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