Canadian Cancer Society

Lung Cancer and the Canadian Cancer Society

Posted by

1

In my earlier days advocating for people affected by lung cancer, I heard rumours that the Canadian Cancer Society (CCS) didn’t give a fair amount of funds for lung cancer research. I did not know if that was true and believed it was important to find out. I determined to investigate, and learn how to advocate about this, but the Canadian Cancer Society seemed so big. I felt intimidated at first and did not know how to start.

Advocacy is relational work, and with encouragement from Chris Draft I worked on getting to know people at the CCS (and other organizations) and building relationships. People from the CCS reached out to me also and asked me to participate with them in various ways. They were interested and listened empathetically as I informed them about lung cancer.

For several years now I have been working with the Canadian Cancer Society. I have served as a panel member, speaking into the decision-making process about which research gets funded. I’ve shared my story quite a few times to raise support for cancer research in Canada and to inform and increase support for people affected by cancer. And of course there have been many conversations with thought-provoking questions and honest dialogue.

This year my lung cancer story is being used again as part of their holiday fundraiser, and also another big fundraiser in the new year. I’m glad to be part of significant cancer research fundraising as a multidisciplinary team member and that my advocacy training and life experience can make a difference.

Earlier this Fall I was also invited to be part of a panel member for the CCS Breakthrough Team Grants: Transforming Low Survival Cancers, specifically lung cancer and pancreatic cancer. (More info here.) It was very exciting to be asked to be part of this, especially due to the lung cancer focus, and I quickly agreed and submitted my “paperwork” to sign up.

Since advocacy is relational work, like so many other advocates I have worked hard to build relationships and partner with researchers and advocates from coast to coast to coast (and around the world). This has gone so well that when I filled out my Conflict of Interest form for the CCS Breakthrough Team Grants I realized that I knew and had partnered in research with a very large number of the research team members who had applied for funding. It was not a huge surprise, but very disappointing that the CCS team (after careful review) determined that I know and have worked with too many applicants to be a panel member this time. This time did not work out, but I’m definitely open to future opportunities.

The Canadian Cancer Trials Group (CCTG) is a national program of the Canadian Cancer Society. I’ve been part of the patient representative committee and lung executive with the CCTG since 2018. I’ve also spoken about lung cancer at CCTG Annual Meetings several times. Very grateful for the good work the CCTG does.

For quite a few years, I have been continuing to have conversations with people from the CCS about things related to lung cancer. They are generally eager to engage, and we are thrilled that this year there is special lung cancer specific funding available and that lung cancer researchers have applied. This increases hope and potentially can make a huge difference for many people affected by the deadliest cancer.

On average, 82 people in Canada are diagnosed with lung cancer every day. Lung cancer is the deadliest cancer, killing more people than the next three deadliest cancers combined.

More research means more survivors and better survivorship. Here’s to more research!

Dr. Vicky Forster and I at the Toronto CCS offices October 2019

November is Lung Cancer Awareness Month (LCAM). What is your Cancer Centre doing for #LCAM?

Three More Reasons to Hold onto Hope

Posted by

4

In a challenging season, there are opportunities to be seized. When life is hard, there is still good going on. Here are three more reasons to hold onto hope…

3) Canadian Cancer Society/Canadian Institutes of Health Research Cancer Survivorship Team Grants

Last summer Jennifer Wilson, director of research operations for the Canadian Cancer Society, asked me to serve with some awesome review panelists to help decide which survivorship team research projects would receive funding. The $10 million competition, CCS/CIHR Cancer Survivorship Team Grants, had the goal of improving health outcomes for cancer survivors. We anticipated that at least four teams would be funded, but then just before the announcement could be made, COVID-19 struck.

Everything changed.

Prior to COVID-19, this $10M competition would have been the largest investment in cancer survivorship research ever made in Canada at one time.

The recipients were announced this month. During the delay brought on by COVID-19, additional partner funds were secured from the Alberta Cancer Foundation and McMaster University, which enabled SIX grants!!

Jennifer Wilson and team worked hard during a global pandemic to make the largest investment in cancer survivorship research even larger! Way to go team! Here is the announcement

  • Fellow panelist Dr. Vicky Forster and I at the Toronto CCS offices Autumn 2019

2) Great news! The US FDA approved SEVEN new lung cancer treatments in May 2020 (during COVID-19)!!

Tabrecta – Capmatinib (METex14)

Retevmo – Selpercatinib (RET)

Opdivo – Nivolumab + Yervoy – Ipilimumab

Tecentriq – Atezolizumab (first line)

Alunbrig – Brigatinib (ALK)

Opdivo – Nivolumab + Yervoy – Ipilimumab + chemo

Ramucirumab – Cyramza + erlotinib – Tarceva (EGFRex19 or ex21)

WOW! WOW!! WOW!!!

What tremendous achievement from multiple teams! Time to celebrate!! #ResearchMatters

1) What a feeling!

This is insignificant in comparison, but I am also thankful because I have feeling in my hands this evening.

Neuropathy (nerve damage / dysfunction) is a common side effect from some cancer treatments. My hands have been generally numb or in significant pain (usually burning, stabbing or electrical) for the past six and a half years of survivorship. I try to keep perspective, since these are side effects of drugs that are keeping me alive.

Tonight I was making biscuits, and as I rubbed my hands together to remove bits of dough, I realised that I could feel the palms of my hands. They felt almost normal, and they still do, a few hours later. Happiness and gratitude! So thankful to be alive six and a half years after diagnosis!! My kids were 6, 10 & 12 at diagnosis, and now they are 13, 17 & 19. That means so much! I’m so glad I get to be here with them. So very grateful!

The costs of survivorship are real. New and improved treatment options mean that (in general) people are living longer and better post diagnosis. Survival rates vary significantly, but about two thirds of people will live at least five years after a cancer diagnosis. This means that over one million Canadians are now living with cancer, and that number is expected to rise dramatically in the next twenty years. (Canadian Cancer Society statistics)

Research matters, to improve both quantity and quality of life.

Research brings hope.

Hold onto hope.

Research and Hope

Posted by

1

Research makes a world of difference! Research is a reason to hope, and daily there are advances in cancer research.

Patients, survivors and caregivers can speak into the research process, making it better. There is need for people who have cancer experience to participate as research advocates.

I’m glad to finally have my computer back and running, the corrupted hard drive replaced. Not having a computer made life and advocacy much more challenging. Even without it, I’ve been busy with a lot of lung cancer activities, including ongoing research advocacy with the Canadian Cancer Trials Group and the International Lung Cancer Foundation.

If you are a lung cancer survivor advocate who is interested in learning and growing as a research advocate, please consider applying to the (IASLC) International Association for the Study of Lung Cancer’s “STARS” program, in which I participated as a mentor for six months last year. Such a great learning opportunity! You’ll need a reference and to set aside a few hours to apply. (The AACR Scientist <–> Survivor Program is also excellent, and open to advocates for all cancers.)

Awesome STARS advocates at the World Conference on Lung Cancer, Barcelona, September 2019.

I spoke as part of a team to a group of patient advisors at The Ottawa Hospital in January, with the goal of working together to improve cancer clinical trials. They were engaged and inspiring! We are walking in new territory and innovating new pathways. I’m hopeful.

Our monthly lung cancer hope outreach tables at the Cancer Centre continue with good coordinating work from Andrea Redway, with support from The Ottawa Hospital, Lung Cancer Canada and the IASLC. It is clear that the information and conversations make a real difference for survivors who stop by, many are newly diagnosed or in process of being diagnosed, which is one of the most challenging parts of the lung cancer journey. We are privileged to invite them into community, share information and stories, and (perhaps most importantly) listen. It is clear by their facial expressions and body language that they tend to leave much more uplifted and encouraged. We have an amazing team of compassionate and skilled people. From time to time, we talk about the emotional toll it takes on our team. Most agree that it leaves us feeling a little emotional fatigue by the end of the day, but after a bit of rest we are restored. Overall, this work brings so much joy and fulfilment to team members. We get along well and enjoy each others’ company. It’s really good to work together as a team. I’m very grateful for these people and other teammates who invest a day each month.

Some of our outreach table team members chatting with Dr. Paul Wheatley-Price in January. (That day I spent a lot of time talking with Ottawa Hospital employees as well as patients!)

There are many amazing people doing good work for people affected by lung cancer and other cancers. What a privilege to get to know some of them, and sometimes connect them with each other! It brings me joy to connect people to form strategic partnerships.

It was great to meet Amy Desjardins, Director of the Canadian Cancer Society, Ottawa Region, in person in January, and to learn that their holiday fundraising appeal which used my story has raised over $280,000 for cancer research.

I’m part of several online lung cancer communities, which offer information, empathy and support. I’ve met many hundreds of people around the world through these groups, and it’s exciting to meet in person. When Kim told me that she was coming to Ottawa for the Family Day long week-end, I asked my kids how they felt about having her family over for dinner. They jokingly gave me the “Stranger Danger” talk! They are very supportive of my lung cancer work because we’ve talked about it and they understand how important lung cancer survivor community and advocacy are. They know that it’s up to us to support people and stand up for better outcomes for people with lung cancer. We were very happy to welcome Kim and her family into our home. It was great to spend time together.

I continue to connect with many people affected by lung cancer and spend hours each month listening, encouraging and seeking to inspire hope. It’s an honour. We have the choice to live in hope or fear, so why not choose hope?

I’m doing a little art these days when I can set aside the time.

Did I mention that my youngest turned 13 recently? That’s right, now all three are teens and life is wonderful! I can’t tell you how grateful I am to be alive and be here with them and for them. I cherish these precious moments, and hope for many more. I dedicate time and effort to advocacy with hope that this will help improve outcomes for others affected by lung cancer, today and in the days to come.

My 13yo made this cake for a little Leap Year Day party we held with some good friends!