1. MM and WM Patient Association, the Netherlands Introduction Aims Activities MM Treatment protocol By Lia van Ginneken Vice-chair CKP Secretary EMP

2. MM&WM Patient Association -Founded in 1983 -More than 1600 members, - 900 MM patients - 250 WM patients - others are relatives and supporters -Funded by the government (Ministry of Health ) and Cancer League (KWF) -Member of Dutch umbrella organisations and EMP, ECPC, Eurordis

3. Organisational structure Membership organisation Governing board: 8 members/4 MT Voluntary staff: appr. 50 (incl. 25 support group leaders)

4. Organisational structure/cont. Meetings: - Board: 4 times/year - MT:4 times /year - Board-Support group leaders: 2 times/year - AGM yearly E-mail and tel. contact

5. AIMS To support the interest of MM and WM patients through: 1. Patient support contacts 2. Distribution of information on the diseases 3. Patient advocacy 4. Stimulation of research

6. Activity 1. Patient support contacts * Patient support groups -19 support groups -25 support group leaders -Meetings twice /year: invite spekers or socialise * Telefoon contacts/helpline * Talk list on the web/e-mail comm. * Yearly Symposia (e.g.AGM)

7. Activity 2: Distribution of Information on the diseases Publications: -Patient handbook -Quarterly newsletter -Information for health professionals Web-site: -Information -Talklist/fora children of patients young patients

8. Activity 3: Patient advocacy -Stimulate the availabilty of treatments and medication for all -Stimulate implementation of new medication -Safe RMP when needed -Input in clinical trial -Quality of care (hospitals) -Symposia ( National and International )

9. Activity 4: stimulate research -Fundraising: ‘Stimulans’ to fund research projects e.g. Doctors’delay Information need of MM patients (Univ. Maastricht) Patient history/experience -Contacts with industry a.o.

10. Treatment protocol MM The Netherlands For patients outside trials

11. First line treatment < 65: Intensive therapy with: 3 cycles of Thalidomide, Adriamycine and Dexamethason Followed by: Cyclophosphamide, Adriamycine and Dexamethason + stem cell harvest Consolidation therapy with: High dose Melphalan + autologous SCT

12. First line treatment > 66 First choice: Melphalan, Prednison +Thalidomide (MPT) In case of renal failure: Bortezomib +/- Dexamethason Very frail patients: Start corticosteroids Maintenance therapy can be considered with: Thalidomide

13. Refractair or relapse Either: Bortezomib + dexamethason, min 6 cycles Or: Lenalidomide + dexamethason, min 6 cycles Or: Thalidomide + dexamethason If needed: low dose cyclophosphamide can be added.

14. Choice for second line therapy is made on individual basis depending on: -Preceding treatment -Side effects like polyneuropathy, kidney problems, trombose risks etc.

15. Supportive treatment -Bisfosfonates (APD iv or Clodronate oral) -Erythropoietine (in case of anemia) -Antibiotics (profylaxes) -(IV immunoglobuline)

16. Thank you for your attention! Questions?