Transcript Practical challenges after transplant

Practical challenges after
transplant
Suzanne Liebersbach
Clinical nurse specialist
Leeds
UK
[email protected]
Cancer survivors report
 Unprepared/unaware what lies ahead
 Need advice effects of cancer/treatment
 body image/libido
 long term follow up issues
 benefits/ returning to work
 Compare life before and after
 ‘new normal’
 difficult to prepare patient
Cancer survivorship
 Currently 2 million people in UK living with
and beyond cancer
 expected to grow by over 3% per year.
 Reflects the increasing incidence of
cancer and increased survival rates.
 National cancer survivorship initiative
 improving the services and support for
people living with and after cancer
www.ncsi.org.uk/
Challenges after transplant
 Physical challenges
 immune system recovery
 bone health
 risk of secondary cancers
 Practical challenges post transplant
 travel and insurance
 returning to work
 benefits
Bone health
 Loss of bone density after transplant
 previous chemotherapy
 steroids
 dose and length of time
 30 - 50% >1 year = osteoporosis
 Most at risk: Women - low body weight &
physically inactive
www.nos.org.uk/
0845 4590230
What factors affect bone
health?
 Menopause -reduced oestrogen
 Diets low in calcium and vitamin D
 Smoking/Ciclosporin/Alcohol
 effect building mechanisms of the bone
 Age - bone density decreases with age
 Family history of osteoporosis (80% genetic)
 Bone scan at 1 year post transplant
 individualised follow up
Preventative measures
 Maintain/improve bone density
 3-5 per week regular weight bearing activity
 brisk walking, aerobics , climbing stairs
 healthy lifestyle/diet
 oestrogen replacement in women < 51yrs
 testosterone replacement in deficient men
 medication
 bisphosphonates
 calcium/vitamin D
Vitamin D
 Main source from sunlight
 Potential consequences of low vitamin D
 muscle weakness
 bone tenderness
 May help to prevent diabetes/↑ blood pressure
and cardiovascular disease
 Difficulties
 lack of sun/sunburn
 trapped in fat cells
 darker skin requires longer exposure
Pigment melanin - ↓ skins ability to make
vitamin D
Vitamin D replacement
Natural sources – animal based
 fish, egg yolks, cheese, fortified milk, beef
and liver.
Supplementation
 prescription
 chemist (400iu/10micrograms)
 Avoid cod liver oil – Vitamin A content
www.nos.org.uk/
www.fhcrc.org/en/treatment/survivorship/survivalstrategie
s/vitamin-d.html
Cardiac and Vascular
complications
 Transplant patients are at a higher risk of
cardiovascular complications
 2-3 times more likely than age matched general
population
 raised blood pressure
 raised cholesterol
www.bhf.co.org.uk
How to help your heart!
 Management focuses on risk factors and education
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smoking
diet
blood pressure
exercise
cholesterol
diabetes
family history
genetic/lifestyle
 This can be done at general practice
well woman/man clinics
annual basis
Benefits of exercise
 Decrease stress
 Lessen fatigue/Improve sleep
 Slow or stop muscle loss
 Increase range of motion and mobility
 graft versus host disease
 Improve mental health
 DoH- Quality of life of cancer survivors 2012
www.dh.gov.uk/health/2012/12/cancer-proms/
Exercise difficulties
 Muscle weakness caused by steroids
 Fatigue/ lack of sleep
 Unwell
 Recommended during and early after treatment
 most difficult time!
Community exercise programmes:
what we have now
 Existing programmes target a different population
 weight management
 cardiac rehabilitation
 smoking cessation
 Some areas may have local programmes
Community
 Staff generally not trained to care for cancer survivors
 High impact programmes inappropriate early posttransplant
 Low impact programmes may not address needs
Community exercise programmes:
what we need
 Low impact & high impact programmes specific
for clients needs
 peer support
 staff adequately trained ( level 3)
 New initiative: Macmillan & local authorities
developing exercise programmes/classes for
cancer survivors at every leisure centre UK
www.changeforlife.com
Ways to increase exercise
 What did you do before?
 30 minutes a day get your heart rate up
 use stairs, house work, gardening
 ‘get active, feel good’
www.macmillan.org.uk/Cancerinformation/Livingwithandafterca
ncer/Physicalactivity/Physicalactivity.aspx
What is my risk of secondary
cancers after transplant?
 Due to exposure to radiotherapy and
chemotherapy
 2-3 x more likely to develop a secondary cancer
 smoking (36 x)
 unhealthy diet/ over weight (4x)
 Advice is the same as general population
 Reduce risk by detecting early
Reduce risk and detect early
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Colon - change in bowel habit/blood
Mouth- dentist
Smears
Breast- self examination/screening programme
Total body irradiation ?
 www.nationalbreastcancer.org/breast-self-exam
Maintain normal weight
Know your family history
Skin- irregular moles
 www.skincancer.org/skin-cancer-information/early-detection
Testes- self examination
 www.cancer.org/cancer/testicularcancer/moreinformation/doihavetesticu
larcancer/do-i-have-testicular-cancer-self-exam
Infection risks increased- why?
 Immuno-suppressive drugs e.g. steroids
 Graft versus host disease
 Slow immune system recovery
 1-2 years?
 some may never fully recover
 Spleen may not function normally
Reduce your infection risk!
 Don’t smoke
 Consider taking penicillin V life long
 Know your own infection history
 Be alert to symptoms and seek help
 Emergency antibiotic stock
 understand drug and what its for!!
 Good relationship with GP (and
receptionist!!)
 Get vaccinated
Vaccinations after transplant
 Our guidelines have been adapted for the UK
from the international guidelines
 can be found on allinex website
www.allinex.org
 6-12 months after transplant
 restart as if childhood
 Annual flu
 immune response to vaccines may be
impaired
Boosters likely
Travel- vaccinations
 Vaccinations as per recommendations for
country
 immune response to vaccines may be
impaired
 immune recovery may be slow
 corticosteroids
 Practice nurse/travel clinic/transplant team
 Risk vs benefit
www.fitfortravel.nhs.uk/
www.nathnac.org/travel/traveladvice.htm
Malaria
 No anti malaria tablets provide total protection
 parasite multiplies faster in patients with
reduced immune function
 cover up and use repellent
 mosquito net
 Areas less at risk?
Travel - General
 Recommend UK only up to 1 year post transplant
 GvHD
 ↑ infection risk
 Immune system
 flight
 swimming
 medical support
 Take extra medication in case of delays
 original packaging
 keep bulk in suitcase
 ? antibiotics
 consultant letter
Travel - sun
 Sun exposure can cause GvHD to flare
 GvHD can destroy the sweat glands
 less able to tolerates heat
 Sunscreen
 Sun protecting clothing
www.sunprecautions.com/
www.equatorsun.com/
www.sports-sunglasseseyewear.co.uk/html/windproof_eyewear.html
Getting Insurance!
 Cancer usually deemed as a pre existing
condition
 Individual companies will have a different
view of the increased risk you represent
 Likelihood of you cancelling holiday is a
major factor whether they will cover you
 Where you are going?
USA expensive
Getting Insurance
 European health insurance card ( EHIC)
treatment in the same way as resident of that
country
 Be prepared for difficult questions
 Have information at the ready
 Search for a couple at a time
 expect high quote – not always relative to your
personal circumstances
 keep trying!!!
 Macmillan website
Returning back to work
 Ready physically and emotionally?
 Vulnerable time
 skills lost/skills needed/confidence
 2010 equality act
 employer cannot discriminate against you
because you have cancer
 legally obliged to make reasonable
adjustments to help you do your job
Returning to work
 Disability employment advisor based at main job
centres
 reduce stress of searching for work
 correct benefits
 help with retraining for new job or existing
 liaise with manager suitable work alternative
 Macmillan tool kit for employers and employees
 http://www.macmillan.org.uk/Documents/GetInvolved/Campaign
s/WorkingThroughCancer/WorkItOut/WorkItOutPart2.pdf
Returning to work
 Start to think early on
 flexible working arrangements
 shorter hours/phased return
 change of employment
 Communicate with managers early
 attending clinic appointments/sickness
Benefits
 Where to find out what you are entitled too
 social worker – some do not deal with
benefits
 welfare rights officer
 Macmillan support
 citizens advice bureau
 May change over time
 blue badge scheme
 Know when they run out/prepare ahead
Benefit changes
 Job seekers now ESA (employment
support allowance)
 Disability living allowance- PIP (personal
independence payments)
 may take 5 yrs to be fully implemented
 point scheme – physical care and mobility
 PIP tool kit – www.dwp.gov.uk
www.gov.uk/
Services
 ‘Moving on’ ‘look good feel better’
Step down programmes- usually 6 week
programme
 Find out what’s available in your area
 Needs may change over time
 Support groups/Peer support
 Psychological issues/support
 recognise signs of not coping
Cancer survivors needs
 Information on the long-term effects of
living with and beyond treatment
 Individual assessment and care planning
 Access/referral to specialist medical care
 Advice on returning to work and benefits
 Support to self-manage your condition
 Access and information about support
services
Useful information
 National marrow donor programme-APP
 www.cancer.net
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Sleep and fatigue
www.macmillan.org.uk/
www.nhs.uk/
www.patient.co.uk/health/cramps-in-the-leg
cramps
www.adviceguide.org.uk/
Welfare rights
Cancer survivor's companion - available from amazon
Benefits
 Macmillan benefits advisor 0808 808 0000 Mon – Fri 9-
8pm
 Macmillan support line 0808 808 0000
 Macmillan.org.uk/benefits advisors
 Benefit enquiry line 0800 882 200
 www.gov.uk/browse/benefits
 www.citizinsadvice.co.uk/getadvice/benefit/calculator
Turn 2 us
 Grants and support available
 Assistance with debts caused by illness
 Buying item specific for illness
 blender if need soft diet
 washing machine
 new mattress
www.turn2us.com
Any questions?