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October 2000 Volume 4, Issue 1:
Myeloma Support North Of The Border
By Dave Dent
The Toronto and District Multiple Myeloma Support Group
The Toronto and District Multiple Myeloma Support Group was formed in August of 1997. Marion and Emile State organized a first meeting of about 20 MM'ers and caregivers. Under their leadership, the group has grown over the past three years to 160 members, with about 40 to 60 attending each meeting. The membership covers the Greater Toronto Area, with members from close by communities such as Hamilton and Oshawa.

The mission of the group is to provide a forum for multiple myeloma patients, caregivers, families and other interested parties to provide each other mutual support, to share experiences and to provide education and information on treatment options, new developments, local and international contacts, and related support.

Dr. Keith Stewart of Princess Margaret Hospital acts as advisor to the group and the McCarty Cancer Foundation provides financial support for its meeting room and mailings.

The format of the meetings is a three-part affair. After new members introduce themselves, a guest speaker addresses different aspects of treatment, then answers questions from the group.

Toronto has a rich base of medical research and the group has benefited tremendously from experts giving of their time. Past topics have included pain management, nutrition, and depression. Dr. Stewart briefs the group about once a year on new developments and treatment options for myeloma and fields questions from the group. Once or twice a year a panel of patients replaces the guest speaker. The panelists describe their treatment strategies and experiences, from side effects to coping strategies for long waits in doctor's offices and hospitals.

The second part of the meeting is a brief break with refreshments and informal networking. In the third part of the meeting, breakout groups are formed for people to be able to discuss their issues in different areas. At present, four breakout groups are used: a transplant group (patients planning or who have had transplants), a non-transplant group (patients using a non-transplant strategy), a thalidomide group (patients using thalidomide), and a caregivers group.

A newsletter is prepared after each meeting so all members have the benefit of key points and new items that come up at each meeting. Marion State ensures that pamphlets on multiple myeloma and treatment options are available at each meeting for newcomers, and that people are aware of the International Myeloma Foundation (IMF), its website, and its Internet list-server for myeloma patients.

One of the highlights for the group was the March 1998 IMF Patient & Family Seminar in Toronto. Members were uniformly thrilled to have the access to so many experts in myeloma and the time and patience of those experts in answering their questions.

The Toronto and District Multiple Myeloma Support Group meets every second month from 2:00pm-4:30pm at Bathurst-Clark Library, 900 Clark Avenue West, Thornhill, Ontario, Canada. The remaining meetings for 2000 will be held on October 14 and December 9. Meetings scheduled for 2001 will take place on February 10, April 21, June 23 and August 25. For further information, please contact Marion or Emile State at (905) 669-565 or estate@netcom.ca, Betty Parish at (416) 516-1716, or Mike Kacsor at (416) 461-9747.

Dave Dent is a caregiver and long time member of the Toronto and District Multiple Myeloma Support Group.

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