[Hopespringpcsg] FW: Canadian Cancer Survivor Network E-letter November 2013

Fri Nov 15 15:11:59 EST 2013

Hi all:

FYI- see E-letter below.

Take care,

Glen

From: Jackie Manthorne [mailto:jmanthorne=survivornet.ca at createsend5.com] On Behalf Of Jackie Manthorne
Sent: November 15, 2013 2:05 PM
To: glen.tolhurst at sympatico.ca
Subject: Canadian Cancer Survivor Network E-letter November 2013

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CCSN November 2013 Eletter

The Canadian Cancer Survivor Network (CCSN) is a national network of patients, families, survivors, friends, community partners, funders and sponsors who have come together to take action to promote the very best standards of care, whether it be early diagnosis, timely treatment and follow-up care, support for cancer patients, or issues related to survivorship or quality of end of life care.

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Special educational webinar on bone health for survivors of breast and prostate cancers

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CCSN has been working recently on an important, yet under recognized health issue for survivors of breast and prostate cancer: bone health. We’ve heard from survivors in a recent survey of our membership that their primary cause of anxiety is the fear of cancer reoccurring or spreading. More than 40% of respondents identified this fear, with 11% highlighting a particular concern about bone metastases (cancer spreading to the bone).

We will be hosting a special webinar on Tuesday, November 26 at 7:00 pm EST to share more information about bone health in cancer. We’ll be joined by Dr. Sandy Sehdev, a medical oncologist who treats many patients whose their cancer has spread to the bone. He will explain how and why cancer spreads to the bone, signs and symptoms, and how to protect the bones to keep them healthy and strong. Dr. Sehdev will also be taking questions from participants about bone health and the information in his presentation. 

Following Dr. Sehdev’s presentation, CCSN president & CEO Jackie Manthorne will share information about the campaign we have undertaken to raise awareness about bone health among patients, survivors and their caregivers, as well as government (who decide what treatments will be available to people who have had cancer spread to the bone).

We hope that you will join us for this informative session! If you would like to attend, please RSVP to Michelle Kiddie at michelle.kiddie at hkstrategies.ca. Log in information will be sent to you closer to the date of the webinar.

Photo: CCSN celebrated National Cancer Survivor Day on June 2, 2013 in Toronto, Vancouver and Calgary, where this picture was taken. From left to right: prostate cancer patient Stewart Campbell, Mona Forrest, secretary of CCSN's Board of Directors, artist Mandy Stobo, and breast cancer patient Alwyn Anderson and the two pieces of artwork by Ms. Stobo. Please check CCSN's Pinterest pages  <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-h/> for additional photos of the three 2013 Survivor Day events.

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Miss our Advocacy Toolkit webinar? Here's how to access it!

If you missed CCSN's live Advocacy Toolkit webinar on Tuesday, November 12, check out the archived webinar!

This informative webinar will be of interest to patients, survivors, family, friends, caregivers, and any member of the community interested in ensuring the best possible care and follow-up for cancer patients and survivors.

Topics discussed

*	The importance of utilizing key advocacy tools to effect change.
*	The practical development and implementation of some of those key tools, including advocacy packages, petitions, postcards and collective letters.
*	The practical steps to hosting a “Day at the Legislature,” one of the most impactful advocacy tools an organization can utilize.

This webinar was given by Ryan Clarke, the President of Advocacy Solutions, who is committed to providing a voice to organizations and individuals through the development and implementation of impactful advocacy strategies. Ryan has spoken about advocacy across Canada and internationally, teaching and training thousands of people on how to make their voices heard.

Click here to access the archived webinar <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-k/> .

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Check out the new sections on asbestos and mesothelioma

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CCSN has added new topics to our website section on Asbestos, Mesothelioma and Lung Cancer on:

*	Asbestos products and exposure <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-u/> 
*	Preventing asbestos exposure at home <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-o/> 
*	Preventing asbestos exposure at work <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-b/> 

Other sections in Asbestos, Mesothelioma and Lung Cancer include:

*	The ABCs of asbestos <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-n/> , including sub-sections on What is asbestos?, the Uses of asbestos, Why asbestos is used, History of asbestos infographic, the Pre-industrial history of asbestos.
*	Asbestos and asbestos-related diseases <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-p/> 

We invite those patients, families and caregivers dealing with asbestos exposure and asbestos-related diseases to share their personal stories with us for inclusion in this section of our website. To discuss this, please get in touch with CCSN president & CEO Jackie Manthorne at jmanthorne at survivornet.ca.

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Join one of our advisory councils!

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CCSN has three advisory councils:

*	Breast Cancer Advisory Council
*	Prostate Cancer Advisory Council
*	Asbestos and Mesothelioma Advisory Council

Each council provides expert advice to the Board and CEO.They are made up of patients, survivors, caregivers, family members and healthcare professionals interested in working hand in hand with other patients.

The main responsibilities of the councils are to:

*	Provide insight about their cancer experiences.
*	Provide advice about the relevant cancer section of CCSN’s website.
*	Help CCSN to recruit patients, survivors and caregivers for studies, surveys and research as well as personally participating in them.
*	Speak at conferences and to media on important issues.
*	Suggest topics and speakers for CCSN educational meetings, webinars or conferences.
*	Accompany CCSN Board and staff on visits to politicians and other decision makers.
*	Suggest ways in which CCSN can better respond to the needs of  patients, survivors, caregivers and families.

We hope you will join! Please get in touch with Jackie at jmanthorne at survivornet.ca if you would like additional information.

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New sections in CCSN's website section on chemo-induced nausea and vomiting 

A cancer diagnosis can be a very traumatic event and will raise many questions for those impacted including life expectancy, treatments and their side effects.  Healthcare providers will provide as much information as they can to best answer questions and concerns; however some cancer issues are not necessarily top of mind during a healthcare visit and there may still be a need for additional information.

One important issue that CCSN believes is not being appropriately or uniformly addressed across Canada and where patient information and education is lacking is chemotherapy induced nausea and vomiting (CINV). CCSN believes that knowing the facts about CINV will help people undergoing cancer treatment take an active role in his or her health and better manage their quality of life.

Explore this section <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-x/> , which contains information on resources, treatment, videos and more about CINV.

Topics addressed include:

*	What is chemo-induced nausea and vomiting? <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-m/> 
*	What you need to know about preventing chemo-induced nasuea and vomiting <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-c/> 
*	Chemo-induced nausea and vomiting overview <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-q/> 
*	Chemo-induced nausea and vomiting resources <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-a/> 
*	Chemo-induced nausea and vomiting videos <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-f/> 
*	A patient charter for CINV management (UK) <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-z/> 

If you would like to share your experiences with chemo-induced nausea and vomiting or issues related to accessing treatment for it, please get in touch with CCSN prestident & CEO Jackie Manthorne at jmanthorne at survivornet.ca.

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Jackie Manthorne, president & CEO of CCSN, in an on-line video series about biosimilars

Amgen Canada is proud to share an online video series they have developed on biosimilars. The videos were released recently in the digital version of The Globe & Mail.

For the past several months, Amgen has worked with The Globe & Mail to create these online videos that cover the key issues on biosimilars. Participants included Amgen Canada’s Karen Burke, who provided perspective on biosimilars in general; Jackie Manthorne, CEO from the Canadian Cancer Survivor Network, who provided the patient perspective; and Michael Reilly, Executive Director from the Alliance for Safe Biologic Medicines, who provided a global perspective on biosimilars, with a focus on why manufacturing matters.

We hope you will enjoy the video <http://ccsn.createsend1.com/t/r-l-ndikkjk-jjdhluuuhl-v/> !

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Canadian Cancer Survivor Network
1750 Courtwood Crescent, Suite 210 (note new suite number)
Ottawa, ON K2C 2B5
Telephone: 613-898-1871
Email: info at survivornet.ca
Website: www.survivornet.ca

Twitter pages

@survivornet.ca
@bestbreastnews,  which concentrates on information on breast health and breast cancer
@canadianmeso, which is about asbestos and mestothelioma
@CanadaCINV, which is about chemo-induced nausea and vomiting

Facebook

http://www.facebook.com/CanadianSurvivorNet
Our second FB page is about asbestos and mesothelioma:  https://www.facebook.com/CanadianMeso

Pinterest

http://pinterest.com/survivornetwork/

Jackie Manthorne's Cancer Blog: http://jackiemanthornescancerblog.blogspot.com/

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