2023 Meetings!

OTTAWA-GATINEAU MULTIPLE MYELOMA COMMUNITY NETWORK  supporting patients with myeloma

2023 Spring Zoom Meeting Agenda

The Ottawa-Gatineau Multiple Myeloma Community Network invites Myeloma patients, family, caregivers and friends to our 2023 spring monthly information and sharing meetings. The mission of the Community Network is to provide hope and to empower Myeloma patients, family, caregivers and friends through education, advocacy, patient care and support and sharing experiences.

Based on the feedback from our patients, the continuing uncertainties surrounding Covid -19 and the critical importance for myeloma patients to physically distance we will continue to hold all our spring sessions on Zoom. Please contact either Robin Sully or Jean Shepherd at the below emails if you are new to the group and would like to participate in the sessions. The meetings will start at 7:00PM and last an hour and a half.  Zoom details to join the meetings will be provided prior to each session. We look forward to “seeing” you!

Wednesday, February 1st we will be joined by Martina Elias, Executive Director Myeloma Canada (MC) and her colleague Aidan Robertson to talk about MC, the drug approval process in Canada and MC’s advocacy engagement to help ensure our access to new treatments.

Wednesday, March 1st  will be a share and care meeting. A chance to meet new members; share experiences with myeloma patients and caregivers; and to catch up on recent local and national myeloma advocacy,  education, research and fundraising initiatives.

Wednesday, April 5th  we will be joined by  Dr. Alissa Visram who will talk about new developments in myeloma research and treatments at OGH and nationally.

Wednesday, May 3rd (to be confirmed)  Dr Sofia Lebel, U of O,  will join us to consider and discuss cancer recurrence anxiety among myeloma patients.

Wednesday, June 7th (to be confirmed)Thrombosis is a frequent and potentially life threatening side effect of myeloma treatments. Dr A. Delluc has been invited to talk about the incidence of thrombosis, its diagnosis and treatment.

Come join us virtually!

For more information on the Ottawa –Gatineau Community Network please contact: Robin Sully at 613 622 5461; maplecrest2553@xplornet.ca or Jean Shepherd at 613 277 4886; jean.shepherd@rogers.com

getting healthy!

WHAT IS Cancer PEP?

Cancer PEP (Cancer – Patient Empowerment Program) is a comprehensive daily home-based 6-month Empowerment Program offered by an Oncologist and a Psychology Professor Scientist (husband and wife team). For 26 weeks receive a daily email and short PEP video – teaching and encouraging home-based health-promoting activities:

  1. Aerobic exercise
  2. Strength training
  3. Anti-cancer diet
  4. Relaxation and stress reduction techniques
  5. Relationship and connection teaching

The program includes weekly teaching videos including a cooking class, and other essential health-promoting skills, and a biweekly videoconference for interested participants. We will teach you the science on how to form healthy habits and let go of unhealthy ones. Click play on the introductory video below to learn more about this program.

see: cancerpep.org

November Meeting!

Our next meeting which will be this Wednesday November 2nd at 7pm.

We are happy introduce the newest member of the hematology team.

Dr Cipkar will join us via Zoom.  

He will introduce himself and talk about his role, and is happy to try and address any questions.

For those who registered for our September meeting, the same link should work for this meeting (and the series). 

Contact: Jean Shepherd <jean.shepherd@rogers.com>

October Meeting Update! Latest on Daratumumab!

Our next meeting which will be this Wednesday October 5th at 7pm. Our planned speaker Sophie Lebel has had to withdraw this week but agreed to reschedule her talk about cancer recurrence, the issues and anxieties to a future date (TBD).

We are very pleased to have Tina Crosbie,Clinical Pharmacist, Hematology at the Ottawa Hospital give a presentation on Daratumumab administered by SubCutaneous injection (which substantially reduces the treatment time compared with IV infusion).

She will cover how Cancer Care Ontario aka Ontario Health is now funding Daratumumab SC for patients in Ontario (after a long delay from the CVOID pandemic).  Tina will also discuss how this is starting to launch at the Ottawa Hospital, and will try to answer your questions about this exciting recent development.

Steps to a Cure

The Ottawa/Gatineau Steps to a Cure Myeloma March is only two weeks away.   Let’s walk the walk, raising money for critical research … moving one step closer to a cure. 

If you have not already done so, you are encouraged to register on-line for the march at Stepstoacure.ca .  Whether you are attending the in-person event, or participating in your own virtual walk, your support of the 2022 Multiple Myeloma Steps to a Cure March is absolutely crucial.  Funds raised will go toward furthering important myeloma research projects, under the auspices of both Myeloma Canada and The Ottawa Hospital’s Myeloma Research Team.   (While you can register on site, the process will be greatly facilitated if you register in advance through the on-line link identified above).

The in-person event is being held at the Ron Kolbus Center in Britannia Park, with the official kick off at 1:00pm, and registration open from 12:30pm.  We look forward to seeing many of you there, and together with those undertaking their own virtual walk, we wish everyone a safe and enjoyable time.  (Please walk at whatever pace and distance you are comfortable with.) 

Together we can make the 2022 Steps to a Cure Myeloma March another memorable event.  

Thank you in advance for your participation and contributions!

If you have any questions related to the event, please do not hesitate to contact us.

Frank Shepherd & Glenn Hussey

Co-Chairs, Steps to a Cure

Frank Shepherd – frank.shepherd@rogers.com

Glenn Hussey –  helene-glenn@rogers.com  

COVID vaccines and myeloma

Our first meeting this fall is on Tuesday September 13th at 7pm on Zoom.  Dr. Bhella will present results of the VIP study, which aimed to look at whether people with blood cancers (like Myeloma) mount a protective antibody response to COVID-19 vaccination (as this group was not included in the earlier COVID-19 vaccination trials).  Dr. Bhella is a lead researcher on the study.

We will also have an opportunity for a Share and Care discussion and will get an update on our Myeloma Walk Steps to a Cure (which takes place on September 25th) from Glenn and Frank.

Come together!

VIRTUAL MEETINGS UPDATE!

Tuesday September 13th
VIP study results and discussion with Dr.Bhella, a lead researcher on the study.

Wednesday October 5th
Cancer recurrence anxiety  – Sofie Lebel.
(Sofie presented on cancer related fatigue (CRF) in the Spring).

Wednesday November 2nd
A member of our myeloma medical doctors to share clinic news and any new developments in myeloma research and treatments.

Wednesday December 7th

Speaker to be confirmed

Cancer Related Fatigue

Our next Support Group meeting is on Wednesday June 1st  at 7pm.  

Our guest speaker is Dr.Sophie Lebel. Professor in Clinical Psychology at the University of Ottawa, who will talk about cancer-related fatigue – an important issue for many of us.  

Sophie has provided an information sheet on  Cancer-related fatigue (CRF), below.

For more information on the Ottawa – Gatineau Community Network please contact: Robin Sully at 613 622 5461; maplecrest2553@ explornet.ca or Jean Shepherd at 613 277 4886; jean.shepherd@rogers.com