Protecting Your Health After Transplant (Adults)

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1 Protecting Your Health After Transplant (Adults) Navneet Majhail, MD, MS Medical Director, Health Services Research, National Marrow Donor Program Adjunct Associate Professor of Medicine, University of Minnesota Minneapolis, MN

2 Transplant Survivors Transplant activity has increased over time ~50,000 BMT worldwide each year ~20,000 BMT in the US each year Survival after transplant has steadily improved ~100,000 survivors in the US in 2009 ~250,000 by 2020 and ~500,000 by

3 Long Term Survival After Transplant Survival rates >80% over the next years for patients who survive in remission for 2 years after BMT Survival lags behind healthy population peers Main causes of late mortality Disease recurrence/relapse GVHD Late complications 3

4 What Are Late Complications Complications that occur months to years after BMT New medical issues Persistence or progression of medical issues that arise before transplant or early post-transplant period Result from treatment exposures before, during or after transplant 4

5 Types of Late Complications Organ toxicity Infections Secondary cancers Growth and development issues Psychosocial, sexual, fertility and QOL issues 5

6 Risk Factors for Late Complications Pre-BMT exposures and comorbidities Primary therapy Conditioning regimen GVHD Other exposures (infections, drugs) DIAGNOSIS Pre-BMT BMT Post-BMT Genetic predisposition Age & Gender Lifestyle factors 6 6

7 Late Organ Toxicity Neurologic cognitive dysfunction, neuropathy Eye dry eyes, cataracts Mouth dry mouth, cavities Lungs bronchiolitis obliterans Heart coronary artery disease, cardiomyopathy Liver iron overload, hepatitis Kidney hypertension, chronic kidney disease Bone osteoporosis, avascular necrosis Endocrine hypothyroidism, growth disturbance 7

8 Exposures Mediate Late Organ Toxicity Chronic GVHD Dry eye, caries, dry mouth, bronchiolitis obliterans, genital and urinary tract issues Exposure to corticosteroids TBI Osteoporosis, hypertension, kidney disease, myopathy Coronary artery disease, caries, dry eye, cataracts, endocrine dysfunction 8

9 Late Infections Increased risk for infections in patients with delayed immune recovery (e.g., chronic GVHD, prolonged steroid exposure) International consensus guidelines for prevention of early and late infections published in 2009 Recommendations for vaccinations in transplant recipients M Tomblyn et al, Biol Blood Marrow Transplant, 2009, 15, 1143 M Tomblyn et al, Bone Marrow Transplant, 2009, 44, 521 9

10 Secondary Cancers Cancers that occur after transplant Different from the cancer for which transplant was performed Cancer treatments may cause them or increase their risk Types of second cancers Post-transplant lymphoproliferative disorders (PTLD) MDS/AML Solid cancers 10

11 Risk Factors for Solid Cancers Chronic GVHD squamous cell cancers Skin Oral cavity, tongue and oro-pharynx Total body irradiation non-squamous cell cancers Breast cancer 11

12 Quality of Life After HCT Affects all domains of QOL Autologous BMT - Lowest at ~2 weeks, returns to baseline by 3 months to 1 year Allogeneic BMT - Lowest at ~4 weeks, returns to baseline by 3 months to 1 year in absence of GVHD Patients with chronic GVHD have persisting QOL deficits Continued long-term impairments compared to healthy controls QOL impairments and psychosocial issues in caregivers 12

13 Care of BMT Survivors

14 Transplant center Challenges Limited resources, competing priorities Difficult to follow and collect data on long-term survivors Patient Distance and resources Complex medical issues Not aware of their risks Referring and primary care physicians Competing priorities Lack of knowledge and resources 14

15 It Takes a Village Models of care must meet specialized needs of high risk population Take into account individual patient exposures Multidisciplinary approach Patients and caregivers Transplant centers Wide range of specialists Referring and primary care physicians Other health care providers 15

16 Individual Risks for Late Effects RISKS ARE NOT SAME 10 year old with Hodgkin s lymphoma treated with autologous BMT 60 year old with AML treated with allogeneic BMT and has GVHD 16

17 Recommended Screening and Preventative Practices for Long-Term Survivors after HCT Co-published in: Biology of Blood and Marrow Transplantation, 2012; 18: 348 Bone Marrow Transplantation, 2012; 47: 337 Hematology Oncology and Stem Cell Therapy, 2012; 5: 1 Revista Brasileira de Hematologia e Hemoterapia, 2012; 34: 109

18 Example: Oral Complications All BMT recipients Educate about preventive oral health and dental maintenance Counsel to avoid smoking and chewing tobacco, avoid intraoral piercing Clinical oral evaluation at 6 mo, 1 yr and then yearly Dentist or oral medicine specialist evaluation at 1 yr and then yearly Pediatric recipients Assessment of teeth development Chronic GVHD patients Clinical oral evaluation every 6 mo More frequent dentist or oral medicine specialist consultations may be considered 18

19 Potential Limitations Working Group acknowledged limitations based guidelines on available literature and expert consensus opinion regarding best practice Limited number of clinical trials and prospective studies Evolution of BMT practice late effects take time to develop and characterize Implementation in resource limited countries General health recommendations vary by country Recognized the need for ongoing research and for periodic update of the guidelines 19

20 Example 35 year old female, 100 days after unrelated donor BMT for AML Healthy prior to diagnosis of AML Exposures include 1 cycle of induction chemotherapy, myeloablative conditioning using Bu-Cy No history of acute GVHD 20

21 Scenarios: With and Without Chronic GVHD Organ No GVHD GVHD Immune system -Vaccinations -PCP prophylaxis x 6 mo Ocular -Clinical evaluation at 6 mo, 1 yr and then yearly -Ophthalmologic exam at 1 yr, subsequent as needed Oral -Clinical evaluation at 6 mo, 1 yr and then yearly -Evaluation by dentist at 1 yr and then yearly -Vaccinations -PCP & encapsulated organism prophylaxis for duration of immune suppression -Monitor CMV based on risk factors -Clinical evaluation at 6 mo, 1 yr and then yearly -Ophthalmologic exam at 1 yr, subsequent as needed -Both may be performed more frequently if needed -Clinical evaluation at 6 mo, 1 yr and then yearly -Evaluation by dentist at 1 yr and then yearly -May be performed more frequently 21

22 Scenarios: With and Without Chronic GVHD Organ No GVHD GVHD Pulmonary -Clinical evaluation at 6 mo, 1 yr and then yearly Cardiac Muscle Second cancers Mucocutaneous -Assess cardiovascular risk at 1 yr and then yearly -General population guidelines for physical activity -Encourage skin self exam -Mammogram starting at age 40 -Annual gynecologic exam -Clinical evaluation at 6 mo, 1 yr and then yearly -Assess cardiovascular risk at 1 yr and then yearly -General population guidelines for physical activity -Periodic clinical evaluation for myopathy -Encourage skin self exam -Mammogram starting at age 40 -Clinical/dental evaluation with focus on oropharyngeal cancer -Annual gynecologic exam -May be performed more frequently if indicated + other organ systems 22

23 Free Resources for Patients/Physicians Patient guidelines include: Simple medical descriptions Checklist to bring to physician visits Glossary of medical terms Order BeTheMatch.org/patient Physician version available at BeTheMatch.org/md-guidelines 23

24 App Version Patient and physician versions Choose risk factors (age group, gender, GVHD, steroid exposure, TBI) and get individualized recommendations functionality Glossary Sign up to receive Living Now Like us on Facebook 24

25 App Version 25

26 Children s Oncology Group Guidelines Focus on childhood cancer survivors Section dedicated to transplant recipients Health links for patients for several survivorship issues and late complications 26

27 Using the Followup Guidelines Educate and inform yourself about your exposures before, during and after BMT Keep a record of your treatments Share the guidelines with your provider Some centers/providers may follow a different schedule and/or tests can use the guidelines as a template for discussing appropriate followup care based on your specific exposures 27

28 Resources

29 BeTheMatch.org/Patient 29

30 ExploreBMT.org 30

31 31

32 Other Resources for BMT Survivors 32

33 Questions?

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