Multiple Myeloma Support Group
Hamilton & District
Hamilton, Ontario, Canada


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SATURDAY SEPTEMBER 10, 2005 MEETING

Welcome - Everyone was welcomed to the meeting.

OLD BUSINESS

i) Quilts:

The last five quilts from Wellwood were offered to the group.

NEW BUSINESS

i) Marathon in Hawaii – Claire and Andrew Baillie:

In the fall of last year, Myra Baillie was diagnosed with multiple myeloma. The seven months that followed brought her pain, discomfort, and uncertainty as she progressed through numerous treatments, including chemotherapy, radiation therapy, blood transfusions as well as new drug therapy. Her family was overwhelmed by the courage, dedication, and fight she gave to battle it. This situation brought the family even closer together, and they realized that family was the most important thing in their lives. On May 11th, Myra passed away at the age of 57, due to complications in her treatment.

While adapting to life without their mother, Claire and Andrew have decided to embark on an experience that is both physically challenging and personally meaningful. Through a group called “Team in Training”, and the Leukemia & Lymphoma Society of Canada, both Claire and Andrew have dedicated themselves to run the Honolulu Marathon (42 km) on December 11th (seven months to the day their mom passed away). Over the next five months, they will be training with experienced coaches and spirited runners to complete their first marathon in memory of their mother.

With the help of their dad and Jane, Claire and Andrew have set a joint fundraising goal of $15,000. The money raised from this event will go directly to fund research, community education and patient services for those suffering from blood cancers such as leukemia, lymphoma and myeloma.

Donations can be made through the following methods:

(A) By calling toll free – 1-877-668-8326 (TEAM) and make a donation using your credit care (Please ensure that donation is on behalf of Claire and Andrew Baillie).

(B) Through the internet at http://www.active.com/donate/tnttor/Baillie.

(C) By mailing a cheque with their name included on the donation. The cheque can be mailed to:

Team in Training
The Leukemia & Lymphoma Society of Canada
936 The East Mall
Toronto, Ontario
M9B 6J9
Canada

If additional information is required, feel free to contact either Claire ([email protected]), Andrew ([email protected]) or Jane ([email protected])

ii) Stem Cell Transplant: Dr. R. Foley

Dr. Foley gave an overview of the background and history of multiple myeloma. He then went on to discuss the transplant synopsis. Patients are initially treated with chemotherapy called VAD for six months. They are then given chemotherapy (cyclophosphamide) and daily injections of G-CSF. Stem cells are then collected for transplant. Later, the patient will receive melphalan, and stem cells are returned. If successful, there is usually an average of three to four years before the myeloma will return once transplant has been performed.

The collection of stem cells may be done in one day. The stem cells can be frozen for up to 10 years. Stem cells are saved if there are enough left over. The first collection of stem cells is usually better quality than collecting them the second time around. The quality of the stem cells may not be very good if kept too long. Stem cells are collected through a pheresis line. The blood is drawn off, and is put through the pheresis machine; resulting in a bag of stem cells. Five million stem cells will be utilized in the transplant to guarantee engraftment. It is better to use your own stem cells, as stem cells from siblings can cause cause graft-versus-host disease (your body rejects the donor’s stem cells). Using your own stem cells is not a cure for multiple myeloma. However, it may give you an opportunity for a longer life span. In some centres, tandem transplants (one right after the other) can be performed if after transplant, the patient has more than five percent myeloma cells. It is not recommended for patients who have achieved a remission after the first transplant. As peripheral blood stem cells are now used instead of bone marrow, the procedure does not need to be performed in the operating room.

Side effects of transplant may consist of mucositis, which could cause decrease in appetite due to sore throat, diarrhea, numbness, and severe fatigue.

Dr. Foley went on to discuss new treatments for multiple myeloma which include:

(a) Thalidomide: This drug was prescribed in 1957 for woman with nausea during pregnancy. However, in 1962, it was removed from the market as it was causing severe birth defects. This drug has a powerful effect on myeloma while the patient is on it, however it may have a tendency to cause blood clots.

(b) Velcade: This drug has a dramatic effect on myeloma. It is given intravenously. However, it may cause heart problems.

iii) Revlamid Update:

Lori Borsos updated the group on revlamid coming to Canada. This drug is now available at Princess Margaret Hospital in Toronto on a patient-to-patient basis, but is still not available in Hamilton.

iv) Fundraising:

If anyone is interested in fundraising for myeloma research, kits are available.

v) CHML Talk Show

On Tuesday morning at 7:40 a.m., 900 CHML will be hosting a talk show regarding velcade. The guest speaker will be a woman who’s mother passed away, as she was unable to obtain access to this drug.

vi) Velcade Petition:

You are encouraged to collect signatures for a petition that states “we want funding of velcade for multiple myeloma”. You may obtain a copy of the petition by contacting Lori Borsos [email protected] or Laura McCallum [email protected] and they will e-mail you a copy of the petition.

vii) Bank on a Cure:

The International Myeloma Foundation (IMF) requires another 3,000 DNA samples (from saliva) to be retrieved for research purposes. They are making progress. Kits will be available at the next meeting.

viii) Funding for Velcade Rejected:

The government has rejected funding for velcade in Ontario at the present time due to a lack of data from the drug company. Ortho-Biotech has promised that the data will be made available by January 2006. All other provinces in the country have been approved.

There is a private clinic in Toronto who will provide the drug, but it costs $25,000 to join the clinic, $1,500 per month for administration of the drug, and $7,500 to purchase the drug from them. Other than this, there is no other mechanism for obtaining velcade.

We need to contact our MPP, write to the Ministry of Health (Mr. Smitherman, Health Critic, or Elizabeth Witmer), and sign the petition stating we need emergency access to this drug.

We will personally be taking the petition to Queen’s Park. Everyone will be notified of the date (mid to late October). The Toronto, London and Hamilton support groups will all be included.

ix) Toronto Marathon Walk:

Laura will be taking part with her family in the Toronto Marathon Walk on Sunday, Oct. 16th. Registration forms are located on the back table.

NEXT MEETING

The next meeting will take place on Saturday, November 12 at 1:00 p.m. at the Linden Park community Church.