Practical challenges after transplant

1. Practical challenges after transplant Suzanne Liebersbach Clinical nurse specialist Leeds UK suzanne.liebersbach@leeedsth.nhs.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 www.ncsi.org.uk/

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 30 - 50% >1 year = osteoporosis Most at risk: Women - low body weight & physically inactive www.nos.org.uk/ 0845 4590230

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 www.nos.org.uk/ www.fhcrc.org/en/treatment/survivorship/survivalstrategies/vitamin-d.html • 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 www.bhf.co.org.uk

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 www.dh.gov.uk/health/2012/12/cancer-proms/

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 www.changeforlife.com

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’ www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Physicalactivity/Physicalactivity.aspx

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 ? 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/doihavetesticularcancer/do-i-have-testicular-cancer-self-exam

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 www.allinex.org 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 www.fitfortravel.nhs.uk/ www.nathnac.org/travel/traveladvice.htm

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 • www.sunprecautions.com/ • www.equatorsun.com/ • www.sports-sunglasses-eyewear.co.uk/html/windproof_eyewear.html

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 • 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/Campaigns/WorkingThroughCancer/WorkItOut/WorkItOutPart2.pdf

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 – www.dwp.gov.uk • www.gov.uk/

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 • 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

36. 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

37. 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

38. Any questions?