MM and WM Patient Association, the Netherlands

IntroductionAimsActivitiesMM Treatment protocol

By Lia van GinnekenVice-chair CKPSecretary EMP

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

Organisational structure

Membership organisation

Governing board: 8 members/4 MT

Voluntary staff: appr. 50 (incl. 25 support group leaders)

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

AIMS

To support the interest of MM and WM patients through:

1. Patient support contacts2. Distribution of information on

the diseases3. Patient advocacy4. Stimulation of research

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)

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

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)

Activity 4: stimulate research

- Fundraising: ‘Stimulans’to fund research projects

e.g. Doctors’delayInformation need of MM patients (Univ. Maastricht)Patient history/experience

- Contacts with industrya.o.

Treatment protocol MM The Netherlands

For patients outside trials

First line treatment < 65:

Intensive therapy with: 3 cycles ofThalidomide, Adriamycine and Dexamethason

Followed by:Cyclophosphamide, Adriamycine and Dexamethason + stem cell harvest

Consolidation therapy with:High dose Melphalan + autologous SCT

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

Refractair or relapse

Either: Bortezomib + dexamethason, min 6 cyclesOr:

Lenalidomide + dexamethason, min 6 cyclesOr:

Thalidomide + dexamethason

If needed: low dose cyclophosphamidecan be added.

Choice for second line therapy is made on individual basis

depending on:- Preceding treatment- Side effects like

polyneuropathy, kidney problems, trombose risks etc.

Supportive treatment

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

Thank you for your attention!

Questions?