1. Practical challenges after transplant
Suzanne Liebersbach
Clinical nurse specialist
Leeds UK

2. 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

3. 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

4. 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

5. Bone health Loss of bone density after transplant
previous chemotherapy
steroids
dose and length of time
% >1 year = osteoporosis
Most at risk: Women - low body weight & physically inactive

6. 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

7. 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

8. 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

9. 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

10. 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

11. How to help your heart!
Management focuses on risk factors and education
smoking
diet
blood pressure
exercise
cholesterol
diabetes
family history
genetic/lifestyle
This can be done at general practice
well woman/man clinics
annual basis

12. 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

13. Exercise difficulties
Muscle weakness caused by steroids
Fatigue/ lack of sleep
Unwell
Recommended during and early after treatment
most difficult time!

14. 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 post-transplant
Low impact programmes may not address needs

15. 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

16. 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’

17. 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

18. Reduce risk and detect early
Colon - change in bowel habit/blood
Mouth- dentist
Smears
Breast- self examination/screening programme
Total body irradiation ?
Maintain normal weight
Know your family history
Skin- irregular moles
Testes- self examination

19. 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

20. 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

21. Vaccinations after transplant
Our guidelines have been adapted for the UK from the international guidelines
can be found on allinex website
6-12 months after transplant
restart as if childhood
Annual flu
immune response to vaccines may be impaired
Boosters likely

22. 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

23. 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?

24. 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

25. Travel - sun Sun exposure can cause GvHD to flare
GvHD can destroy the sweat glands
less able to tolerates heat
Sunscreen
Sun protecting clothing

26. 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

27. 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

28. 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

29. Returning to work Macmillan tool kit for employers and employees
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

30. 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

31. 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

32. 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 –

33. 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

34. 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

35. Useful information National marrow donor programme-APP www.cancer.net
Sleep and fatigue
cramps
Welfare rights
Cancer survivor's companion - available from amazon

36. Benefits Macmillan benefits advisor 0808 808 0000 Mon – Fri 9-8pm
Macmillan support line
Macmillan.org.uk/benefits advisors
Benefit enquiry line

37. Turn 2 us www.turn2us.com Grants and support available
Assistance with debts caused by illness
Buying item specific for illness
blender if need soft diet
washing machine
new mattress

38. Any questions?