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October 2024
Dear community...
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Martine Elias,
Chief Executive Officer
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"Hi everyone,
We’re fresh off the heels of our most exciting and most successful Multiple Myeloma March in the history of Myeloma Canada!
Hundreds, actually thousands of you have, over the past months, invested your heart and soul, time, sweat and energy into organizing, promoting and executing your marches. You all deserve not only a tremendous round of applause, but a well-deserved rest!"
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International Myeloma Society’s annual meeting – some takeaways | |
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This past September 25 – 28, the International Myeloma Society (IMS) held their 21st IMS annual meeting in Rio De Janeiro, Brazil where the latest advancements in multiple myeloma research were discussed. Below is a day-by-day summary prepared by the Multiple Myeloma Research Foundation:
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Day 1 - important updates on treatment combinations for first-line and maintenance therapy for patients with newly diagnosed multiple myeloma (NDMM). Click here
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Day 2 - important updates on new treatment combinations for NDMM, particularly patients aged 65+ years; new report on real-world experience with CAR T-cell therapy for relapsed/refractory multiple myeloma (RRMM). Click here
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Day 3 - the potential of new treatment strategies for patients with RRMM; updates on quadruplet regiments for NDMM. Click here
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Day 4 - updates on the use of various treatments for patients with RRMM, including a new class of myeloma drugs called CELMoDs. Click here
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I - Have your voice heard!
Participate in 2 NEW myeloma patient and caregiver experience surveys
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Myeloma Canada is seeking information from people impacted by myeloma, so we can share their experiences with the Canadian Drug Agency’s pan-Canadian Oncology Drug Review, Expert Review Committee (pERC), and the Institut national d’excellence en santé et en services sociaux (INESSS). These organizations make funding recommendations on oncology drugs approved for sale in Canada to provincial and territorial drug programs. | | |
Survey #1 - Isatuximab + VRd
The treatment combination IsaVRd (isatuximab + bortezomib [Velcade] + lenalidomide [Revlimid] + dexamethasone), will soon be reviewed for reimbursement in individuals with newly diagnosed transplant-ineligible myeloma.
Deadline to participate: November 10, 2024, 11:59 PM EST.
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Survey #2 - Selinexor + Vd
Selinexor in combination with bortezomib (Velcade) and dexamethasone (XVd) will be reconsidered for reimbursement in Quebec for patients with relapsed/refractory myeloma who have received at least 3 prior lines of therapy. We need participation from patients and caregivers across Canada (i.e. regardless of the province in which you live) please.
Deadline to participate: November 10, 2024, 11:59 PM EST.
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The surveys should each take approximately 10 minutes of your time.
If you have any questions about either survey, please write to contact@myeloma.ca and indicate “Drug survey” as the subject.
Thank you in advance for your participation and for helping your fellow Canadians impacted by myeloma!
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II - Making noise this Blood Cancer Awareness Month | | |
September 30th marked the end of Blood Cancer Awareness Month 2024, a global effort that started in 2010 to increase awareness of blood cancers like multiple myeloma, lymphoma and leukemia.
Thank you to Johnson & Johnson Innovative Medicine (Janssen) for facilitating the excellent press opportunities below through Healthing.ca so we could spread awareness for myeloma and share stories of living with the disease across the country:
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Rinat Avitzur: What it feels like: 'I will find ways to make cancer easier for people like myself’
Rinat shares the importance of her support system in the Montreal Gazette, the National Post, the Ottawa Sun, and the Vancouver Sun, all via healthing.ca as well as on Canoe.com.
Read the article
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Nigel Holmes: Maple Ridge man with multiple myeloma finds hope in advancements
Nigel describes the “firehose” of information he encountered after his diagnosis at the age of 36, in the Maple Ridge-Pitt Meadows News.
Read the article
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Mélanie St-Jacques: «Je savais que quelque chose clochait»: elle doit retourner chez le médecin six fois pour se faire diagnostiquer un cancer du sang. (“I knew something was wrong": she had to go back to the doctor six times to be diagnosed with blood cancer.)
Mélanie tells her diagnosis story in French in the Journal de Montréal, Journal de Québec, QUB.ca and TVA Nouvelles.
Read the article (in French)
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...and Martine Elias, Myeloma Canada’s CEO: The changing landscape of multiple myeloma
Martine was featured in the Toronto Star, describing the state of research, awareness, and access to healthcare in Canada for folks living with myeloma.
Read the article
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A huge thank you to Rinat, Nigel, Mélanie and everyone who worked so hard to make myeloma matter this past September! Myeloma is the second most common form of blood cancer, with approximately 11 Canadians diagnosed daily. Let’s get out there and raise awareness, today and every day! | | |
I - Register for the Colorectal Cancer Resource & Action Network’s (CCRAN) virtual symposium on early age onset cancer across tumour types | | |
Addressing the detrimental impacts of early age onset cancer (EAOC): Access to timely diagnosis and management across tumour types including colorectal cancer, breast cancer, lung cancer, gynecologic cancers, liver cancer, bile duct cancer, pancreatic cancer, and more.
Cancer rates are rising among people under 50. It’s more important than ever to be informed and proactive. This Symposium brings together top experts, researchers, and fellow patient advocates to explore the unique challenges of early age onset cancer detection, diagnosis, and treatment.
Myeloma Canada is proud to be working with the CCRAN on this important issue, as well as on a national survey of EAOC’s patients’ experiences which will be presented at the Symposium.
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Colorectal Cancer Resource & Action Network (CCRAN) is a patient-focused organization | | |
II - Final edition of the 2024
Mini Mag
The Multiple Myeloma March Mini Mag is your one-stop shop for the latest news and updates on the Multiple Myeloma March 2024.
- Fundraising update: You did it!
- Video memories
- Creative billboard campaigns
- Photos our eternal gratitude, and more!
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III - Myeloma Awareness InfoTable Day at Lakeridge Health | | |
Brian Snowdon and Chantel Wicks | |
On September 18th, 2024, Brian Snowdon, leader of the Peterborough & Kawartha Lakes Support Group, and Chantel Wicks, Regional Manager of Community Engagement & Development at Myeloma Canada, teamed up to host a Myeloma Awareness InfoTable Day at the R.S. McLaughlin Durham Regional Cancer Centre, Lakeridge Health in Oshawa, Ontario.
Representing both the Peterborough & Kawartha Lakes Support Group and the Durham Region Support Group, along with providing information for the AL amyloidosis community, Brian and Chantel connected with visitors impacted by myeloma. They shared educational resources, introduced local support groups, and highlighted how Myeloma Canada can assist those affected by the disease.
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What's new at Myeloma Canada | |
I - NEW InfoSheet: “Managing osteonecrosis of the jaw (ONJ) and other mouth issues associated with myeloma and its treatment.”
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New title added to InfoSheets series on managing side effects!
This month, we address osteonecrosis of the jaw (ONJ) and other mouth issues associated with myeloma and its treatment.
Good oral health is always important, even more so when you're undergoing myeloma treatment. It's best to identify and treat dental problems and oral infections before you start chemotherapy, undergo a stem cell transplant, or start taking bone protector drugs.
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II - A peek at the PAC
Read the third edition of "A peek at the PAC" for news from your Patient Advisory Council (PAC).
This month we'll hear from the Ontario representatives.
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III - Howdy from the IMF Support Group Leaders Summit!
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This past month, Myeloma Canada, along with a few of our support group leaders, had the pleasure to attend the International Myeloma Foundation (IMF) Support Group Leaders Summit in San Antonio, Texas. The event brought together leaders from across the United States to share ideas, build connections, and celebrate their vital roles in supporting the myeloma community. | |
Emmanuel Mercier, Jane Greggio, Chantel Wicks | | |
For us, it was an excellent opportunity to network, generate new ideas, learn, and support peers in our collective mission to improve the lives of people affected by myeloma.
Representing Myeloma Canada were Emmanuel Mercier, Support Group Leader (SGL) of the Saguenay Myeloma Support Group – Eastern Quebec Network; Jane Greggio, SGL of the Niagara Region Multiple Myeloma Support Network; and Chantel Wicks, Myeloma Canada’s Regional Manager of Community Engagement and Development.
If you're traveling to the US or live near the border and want to connect with a US support group, visit Myeloma Canada’s 'Find support' page on myeloma.ca and select the 'United States' box.
To find a local or online support group, or learn more about our peer support programs, click here.
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Spotlight on Gisèle Fournier:
Friends and outdoor activities, critical to myeloma care
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Hello! I am Gisèle Fournier and I live with multiple myeloma.
Let's travel back to spring 2020 for a short moment. What was happening at that time? Amongst other things, the beginnings of a pandemic.
After having worked for 20 years in France and Switzerland, I was in the midst of preparing my move back to Quebec when a first confinement started in Switzerland. My relocation project, already complex, suddenly became much more difficult...
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Each year Myeloma Canada hosts InfoSessions for people living with myeloma and their families, as well as healthcare professionals. InfoSessions feature guest speakers from the medical community in cities across Canada and are generally half-day sessions, covering the many aspects of living with myeloma and its management.
Our 2024 InfoSessions are now over. Stay tuned for our 2025 calendar!
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Join us online from the comfort of your own home! All you need is a computer, tablet or smart phone, and an internet connection.
Ongoing Research in Myeloma: Developing Less Invasive Detection Methods Using Blood-Based Cell-Free DNA Tests
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Speaker: Dory Abelman, PhD Candidate at the University of Toronto, Department of Medical Biophysics. Jointly supervised by Dr. Trevor Pugh and Dr. Suzanne Trudel Labs, Princess Margaret Cancer Centre, Toronto, ON
November 14th, 2024
6:30 pm – 7:30 pm (EDT)
For more information, click here.
Join Dory Abelman for a talk on research into new, less invasive methods for monitoring multiple myeloma. Dory will discuss how his research uses cell-free DNA (cfDNA) from a blood test to detect genetic changes as a potentially less invasive alternative to bone marrow biopsies.
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Dory Abelman
PhD Candidate, University of Toronto
Department of Medical Biophysics
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Among past webinars to watch:
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Max out for Myeloma: Olympic weightlifter takes on myeloma
Olympic weightlifter Terrace Boath has taken her strength beyond the platform this season by launching Max Out for Myeloma, a powerful fundraiser in honour of her father, Brian Krushel, who was diagnosed with multiple myeloma in 2018.
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With a goal of raising $5,000, Terrace will generously donate all proceeds directly to Myeloma Canada!
You can support Terrace’s campaign in two ways:
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Pledge a donation of any amount for each kilo Terrace successfully lifts during her competitive season (Oct 2024 - May 2025).
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Purchase a "Max Out for Myeloma" t-shirt for $35.
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Olympic weightlifter Terrace Boath | | |
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Follow “Max Out for Myeloma” on Instagram here
Join Terrace in her journey to make a powerful impact in the fight against myeloma and help her max out for this important cause.
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Turn your passion into a fun fundraising event...
We're here to help!
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Please consult our website at myeloma.ca for up-to-date news and information,
as well as the following helpful links:
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Myeloma Canada's promise: To improve the lives and empower all Canadians affected by myeloma, accelerate access to the best care, while supporting the pursuit of its cure and prevention. | |
Follow us on social media for the most up-to-date information and resources: | |
Si vous préférez recevoir vos communications en français, écrivez-nous à contact@myelome.ca. | |
To donate to Myeloma Canada
please visit myeloma.ca or call us toll-free at 1-888-798-5771.
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