Practical challenges after Practical challenges after transplant transplant

Suzanne LiebersbachSuzanne LiebersbachClinical nurse specialistClinical nurse specialist

Leeds Leeds UK UK

suzanne.liebersbach@leeedsth.nhs.uksuzanne.liebersbach@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?