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


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SATURDAY MARCH 12, 2005 MEETING

Welcome - Everyone was welcomed to the meeting.

OLD BUSINESS

i) Donations
A heart-felt thank you went out to the group for their generous donation of $158.00. These funds will be used for mailings, office supplies, etc.

ii) Cell Phone Program
The Cell Phone Program offers our group an opportunity to fundraise through the donation of working and non-working cell phones. We make anywhere from $2.00 to $10.00 per phone, depending upon the condition. Therefore, if you have any phones that are not being used, please bring them in. Also, if anyone is interested in taking on this project, please let Laura McCallum or Lori Borsos know.

iii) International Myeloma Foundation Meeting
Just a reminder that the International Myeloma Foundation will be hosting a family and patient conference on Friday, July 22nd and Saturday, July 23rd in Toronto. This meeting will provide updates on research, treatments, and supportive care.

iv) Livestrong Bracelets
These bracelets are named after Lance Armstrong who is a testicular cancer survivor, which spread to his brain and lungs. He recovered, and went on to win the Tour De France 5 times. They are provided by the Lance Armstrong Foundation to support all cancer survivors, and may be purchased for $1.50 each (roughly our cost) at the front entrance of the hall. Lance Armstrong has also written three books pertaining to his life after he was diagnosed with cancer.

v) Toronto Cancer Walk
Just a reminder that the Toronto Cancer Walk will be taking place on Sunday, October 16th. We are trying to arrange a multiple myeloma team to part icipate. Final details will be forthcoming.

NEW BUSINESS

i) Website
We now have our own website www.hamilton.myeloma.org.You will be able to access our newsletter and up-to-date information any time.

ii) Velcade
The newspaper article regarding John Packham and the Federal approval of Velcade on January 31, 2005 was discussed. This is a very exciting break-through for multiple myeloma patients. Ortho Biotech Distributes this drug in Ontario. It has not yet been approved by Cancer Care Ontario, and it will be very expensive to purchase. It is offered on compassionate grounds only, but has not yet been approved by the provincial government. It could take eight months or longer for this process to be completed. Therefore, it is suggested by our physicians to send letters to our MPs and MPPs to step up the approval process. An attachment including phone numbers and address has been distributed. The three pertinent provincial contacts include:

Honourable George Smitherman
Minister of Health & Long Term Care
10th Floor, Hepburn Block
80 Grosvenor St.
Toronto, Ontario
M7A 2C4
Fax (416) 326 -1571

Susan Paetkau, Director
Drug programs Branch
5700 Yonge St., 3rd Floor
Toronto, Ontario
M2M 4K5
Phone (416) 327-8095
Fax (416) 327-8123

Cancer Care Ontario
Dr. Brent Zanke
620 University Ave.
Toronto, Ontario
M5G 2L7
Phone (416) 971-9800
Fax (416) 971-6888

WELLWOOD RESOURCE CENTRE

Norma Frankoff reviewed the background of the Wellwood Resource Centre, which is located in the main corridor of the Henderson Hospital. It is a community-based organization that offers supportive care to patients, families, and friends. They make referrals to the community (Cancer Assistance program, Cancer Society, and Juravinski Cancer Centre), provide free monthly educational lecture series pertaining to multiple myeloma, stem cell transplants, living with life-threatening illnesses, etc, and are available to answer any questions you may have.

Their hours of operation are Monday to Friday from 9:00 a.m. to 4:00 p.m. and Monday and Thursday evenings from 6:30 p.m. to 8:30 p.m. You can contact them at 905-389-5884.

They offer peer support which consists of group support, individual support, caregivers, women with breast cancer, and The Living Well With Cancer Support Group for serious issues.They have recently developed a program for teens and young adults whereby they go to a chat room and discuss issues privately with someone in their own age group. Please call Wellwood to register.They offer quality of life programs which are intended to help people stay healthy emotionally and psychologically. These programs include yoga, tai chi, foot massage, therapeutic touch, meditation, quilting, expressive journey through art, and afghans. There are 195 skilled, trained and active volunteers who provide these programs.

The Afghan Program is very popular. Every Thursday morning, volunteers sew, label, and wash afghan squares to donate to people who need a “warm hug”. This program was started five years ago, and the 5,000th afghan was just given away.

The Wellwood Resource Centre is trying to raise money to build another centre in the community, as some people do not want to return to the hospital.A $2 million endowment will be used to keep the new facility open once it is built. This money was donated by Mr. Charles Juravinski. There are plans for a Children’s Program to be implemented when the new building is built. Please feel free to drop in any time!

RESEARCH RESULTS ON ADVOCACY FOR THE PATIENT

Betty Ann Griffiths (Advanced Nurse Practitioner) presented the results of her study on advocacy for the patient. She defined cancer related fatigue (CRF) as being persistent subjective sense of tiredness, related to cancer or cancer treatment that interferes with usual functioning.

There are multiple causes of CRF which could be related to treatment, medication, and decreased blood counts. Indicators of cancer related fatigue include decreased ability to expend energy, sleep disturbances, attention deficits, decreased endurance, and decreased quality of life.

In order to manage these problems, the problem must be identified and treated, the patient’s emotional issues need to be addressed, the patient needs to get adequate rest, and it is important to exercise in order to decrease fatigue and depression. It was advised that the patient should take naps only during the day. There is a need to alternate between restorative rest and restorative energy. If unable to sleep soundly during the night, the patient may need to speak to his/her health care team. Insomnia increases daytime fatigue. Energizing activities such as short walks, getting involved in hobbies for short periods, and anything that distracts pleasantly is often energizing. If the patient has poor diet habits, nutritional counseling is helpful.

Emotional issues or concerns should be discussed with members of the health care team. Low mood for extended periods of time can be a sign of depression. Twenty-five percent of patients diagnosed with cancer will also be diagnosed with depression. Treatment improves quality of life. Sometimes just talking about concerns and getting accurate information about concerns relieves stress, and improves ability to adapt to living with your diagnosis. Study results demonstrated that feeling connected with a health care team member was an enabling factor in discussion regarding emotional/spiritual issues.

In summary, Betty Ann found that the cause of fatigue in cancer patients is multi-factorial. Most patients experience a gradual decrease in fatigue, and then it returns to normal. The duration of fatigue for those patients undergoing bone marrow transplant is prolonged. Self-care interventions are helpful. Exercise and restorative therapy decrease anxiety and depression, and increase tolerance for physical activity.

NEXT MEETING

The next meeting will take place on Saturday, May 14th at 1:00 p.m. at the Linden Park community Church.