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MM and WM Patient Association, the Netherlands

MM and WM Patient Association, the Netherlands. Introduction Aims Activities MM Treatment protocol By Lia van Ginneken Vice-chair CKP Secretary EMP. MM&WM Patient Association. Founded in 1983 More than 1600 members, - 900 MM patients - 250 WM patients

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MM and WM Patient Association, the Netherlands

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  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/forachildren 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?

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