TORONTO AND DISTRICT MULTIPLE MYELOMA SUPPORT GROUP
Who We Are
The Toronto & District Multiple Myeloma Support Group is comprised of myeloma patients, their caregivers, families, and friends. It grew out of a need for information and support in dealing with this rare cancer.
Our group welcomes patients and their spouses, caregivers, loved ones, significant others, family members and friends to join us as we share support, comfort, information and friendship in a relaxed, informal and confidential environment.
What We Do
The main purpose of the Group is to offer myeloma patients and their loved ones the support and information needed to help them live longer, stronger lives.
The support group provides the following 4 services:
1) In Person and Virtual Meetings
We have an in-person meeting every second month that often has a guest speaker knowledgeable in myeloma, in associated health conditions, or on issues affecting myeloma patients.
We also host "Share and Care" virtual meetings, made up of patients and caregivers. These meetings are an opportunity to share our experiences in the myeloma journey.
Both forms of meetings inform us about advances in treatments, emerging therapies, managing side effects, and other aspects of living with myeloma. While these meetings are largely informational in nature, they are opportunities to talk informally with other myeloma patients and their families, and to share experiences.
Meeting details are provided under the "Meetings" tab of this website.
We produce a video of the guest speaker presentation at most meetings, for the benefit of the Canadian myeloma community. Videos of past meetings are found on the Myeloma Canada youtube channel website at: https://www.youtube.com/user/myelomacanada/videos.
The Toronto & District Multiple Myeloma Support Group is comprised of myeloma patients, their caregivers, families, and friends. It grew out of a need for information and support in dealing with this rare cancer.
Our group welcomes patients and their spouses, caregivers, loved ones, significant others, family members and friends to join us as we share support, comfort, information and friendship in a relaxed, informal and confidential environment.
What We Do
The main purpose of the Group is to offer myeloma patients and their loved ones the support and information needed to help them live longer, stronger lives.
The support group provides the following 4 services:
1) In Person and Virtual Meetings
We have an in-person meeting every second month that often has a guest speaker knowledgeable in myeloma, in associated health conditions, or on issues affecting myeloma patients.
We also host "Share and Care" virtual meetings, made up of patients and caregivers. These meetings are an opportunity to share our experiences in the myeloma journey.
Both forms of meetings inform us about advances in treatments, emerging therapies, managing side effects, and other aspects of living with myeloma. While these meetings are largely informational in nature, they are opportunities to talk informally with other myeloma patients and their families, and to share experiences.
Meeting details are provided under the "Meetings" tab of this website.
We produce a video of the guest speaker presentation at most meetings, for the benefit of the Canadian myeloma community. Videos of past meetings are found on the Myeloma Canada youtube channel website at: https://www.youtube.com/user/myelomacanada/videos.
2) Newsletters and our Brochure
We publish a newsletter every second month which provides information on meetings, usually a transcript of the last meeting, a description of developments in the myeloma community, and a description of myeloma related events in the Toronto area.
Please contact anyone listed under “Contacts” if you wish to be added to the newsletter distribution list. A copy of the latest newsletter is provided here. In addition, you can find archived newsletters on the " Contacts, Archived Newsletters and Links" page of this website. Also, here's a copy of our brochure in pdf format, ready for downloading and printing.
We publish a newsletter every second month which provides information on meetings, usually a transcript of the last meeting, a description of developments in the myeloma community, and a description of myeloma related events in the Toronto area.
Please contact anyone listed under “Contacts” if you wish to be added to the newsletter distribution list. A copy of the latest newsletter is provided here. In addition, you can find archived newsletters on the " Contacts, Archived Newsletters and Links" page of this website. Also, here's a copy of our brochure in pdf format, ready for downloading and printing.
March 2024 Newsletter |
Toronto and District Support Group Brochure |
3. Opportunity to speak with other patients and caregivers
Some patients benefit from speaking one-on-one with another myeloma patient who has navigated the myeloma journey for some time and is willing to share their experience. Click on the “Contacts and Links” tab for a listing of patients or caregivers who would be pleased to speak with you, answer questions, and help you source additional information.
4) Information
We offer printed information material at our meetings. We also work closely with Myeloma Canada (www.myeloma.ca). Their website contains a wealth of information. It also contains the Myeloma Patient Handbook, an excellent overview of the disease and treatments, linked here:
https://www.myelomacanada.ca/pixms/uploads/serve/ckeditor/myeloma_canada_patient_handbook_10_2017-2.pdf
The "Contacts, Links and Archived Newsletters" page of this website also contains information on other valuable sources of information and support.
Travel Insurance Update
Be careful if you buy Travel Insurance as a Cancer Patient, and practice Personal Risk Management if you travel
Travel Insurance can reimburse you for that portion of a claim not covered by OHIP or your Provincial health plan for out of country or out of province Emergency Medical Services, Transportation Home, and the costs arising from the Trip Interruption. These uncovered costs can run into hundreds of thousands of dollars, particularly if they involve US healthcare.
However, these policies generally have a “pre-existing condition exclusion”. This means that they will not cover you if the claim arose from a condition that existed prior to the inception of the policy – such as multiple myeloma.
NEW: In response to earlier versions of this notice, patients have contacted us and advised of 2 insurers that have recently provided Travel Insurance coverage to myeloma patients with a 7 day “Stability Period”. This means that the pre-existing condition exclusion will not apply if the traveller is “Stable” for at least 7 days prior to travel. Stability is carefully defined and an applicant should read the policy wordings and documentation provided. The insurers are Medi-Quote, www.mediquote.ca, and Travel Guardian, travelguardian.ca. No attempt has been made to analyze these policies for other provisions and a careful comparison should be undertaken if you get quotes from both.
Do not expect an “off the shelf” policy wording such as those available with some premium credit cards to provide coverage. Ideally, contact your Agent or Broker and seek their assistance in tailoring the correct policy.
Note that many employer-sponsored group insurance programs include Travel Insurance coverage, and if one joined the program before the diagnosis of myeloma, the pre-existing conditions exclusion may not apply.
Another consideration is whether to go ahead and buy the coverage anyway, as it may provide coverage for other risks while travelling.
In any event, consider augmenting your Travel First Aid Kit with antibiotics for respiratory and gastro-intestinal infections, a topical antibiotic cream and even antibiotic eye drops, especially if you are immuno-compromised. Knowing when the next flight home is may also be prudent, as in some cases one can fly home at the first signs of illness instead of using foreign medical services.
It would be appreciated if you could contact Jan Wleugel, a member of the Toronto Myeloma Support Group Steering Committee: janwleugel@gmail.com, if you are successful in obtaining this coverage from an insurer other than Medi-Quote or Travel Guardian with a short “Stability Period” (such as 7 days) and/or without the “pre-existing conditions” exclusion. Please provide the name of the insurer, the name of the broker or agent, and ideally a copy of the insurance policy. We will not share your name with the group, but we may assist people by sharing the name of the insurer and/or broker and contact
Canadian Myeloma Research Group(CMRG) Seminars
Dr Donna Reece, Chief Medical Officer of CMRG is leading a series of seminars that will be of great interest to myeloma patients.
Date: Thursday, April 25, 2024, 2:00 pm to 3: 00pm
TOPIC: New Myeloma Treatments – CAR-T, BiTE, and New Drugs in Canada
Registration link: us06web.zoom.us/meeting/register/tZEpf-CrqDgiGdCA75XlSBrXPTYQ7Hc48Hun#/registration
Speakers: Suzanne Rowland, NP, Dr Donna Reece
Location: ZOOM
After registering, you will receive a confirmation email containing information about joining the meeting.
The following is Dr Reece's description of the seminars and their value to myeloma patients:
"Since it is critical to arm our patients with as much information as possible, I am excited to spearhead a CMRG Research Educational Webinar Series for patients and other stakeholders. While this will start with” Myeloma Basics", it will later provide up-to-date research information on Canadian trials, including CMRG ones, and details of the emerging—but limited--drug access programs from some Pharma companies. It looks like it will be many months (even years) before the new immune platforms will be funded via provincial algorithms; I am also concerned about obtaining eventual funding for all the new approaches so they can be given in sequence. There is a lot to discuss.
We are fortunate that both Suzanne Rowland (Myeloma Nurse Practitioner who just retired from Princess Margaret) and Ledia Mataj (our CMRG administrator who is also a physiotherapist) will also be offering their unique perspectives during this series. And there will be time to take questions."
CMRG Seminar Series |
Be Careful if you buy Travel Insurance as a Cancer Patient |