What is a cancer support group worth? Who can place a value on a group like this? We can encourage each other, support each other, lift each other up. We can help each other know we’re not alone. Together we can hold onto hope. Imagine what more we can do!
Together we are the Ottawa Lung Cancer Support Group. The Jelly Bean Gang. The Ottawa Circle. #LungCancerStrong
Here is how we looked on Zoom today. Due to COVID we’ve temporarily pivoted to the online world. Screenshot at 4:09pm EDT, shared with permission. Look at our faithful leader and all these beautiful lung cancer survivors, one on horseback, celebrating one year since diagnosis. Happy “Cancerversary”! Looking good, Ottawa!
Wouldn’t it be good if everyone affected by cancer had a support group to be part of?
In the past couple of days I’ve been part of meetings with two teams that I love working with, the Ontario Institute for Cancer Research (OICR) Patient and Family Advisory Council (PFAC) and the Canadian Cancer Trials Group (CCTG) Patient Representative Committee. Both are made up of brilliant, skilled, dedicated people who have experience with cancer, whether directly or as a care giver, and work hard to advance research while representing the broader cancer community. It’s exciting to be together, speaking with passion and knowledge about improving research for people affected by cancer. These people are dynamos, and together as teams, cancer world changers!
Here are some quick numbers about the OICR:
21,000+ Ontario patients recruited to OICR-supported clinical trials since 2012
2,076 highly qualified personnel across Ontario enhanced their knowledge and skills by participating in OICR-supported projects
590+ collaborations with institutes around the world
… and the CCTG:
Partnerships: 600+ trials in 40+ countries
IND (Investigational New Drug) Program: 38+ years experience in 205+ drug trials
Tissue Bank: 300,000+ samples from 120+ trials
Network: 2100+ investigators at 85+ sites
Research is best when multidisciplinary teams work well together. Research is best when thoughtful survivors, patients, caregivers, family members and caring friends have a real role, participating at every stage in the process. When we form inclusive teams which embrace the authentic voices of people affected by cancer who genuinely care, we work to ensure that genuine cancer patient/survivor perspective is represented and research is better.
The American Association for Cancer ResearchScientist <–> Survivor Program has been inspiring powerful partnerships between scientists and survivors for decades, and accelerating research. How grateful I am for the opportunity to participate in person at the Annual Meeting in Atlanta in 2019. These experiences educate us, connect us, and open doors for further advocacy opportunities.
Fellow cancer advocate Dr. Vicky Forster’s important article, What cancer survivors can teach cancer researchers, was published this week. It speaks about the importance of cancer survivors’ engagement in every stage of the research process. Vicky brings her valuable perspective as both childhood cancer survivor and current cancer researcher.
Vicky and I have enjoyed some energizing conversations! We first met over lunch at the International Psychosocial Oncology Society (IPOS) conference in 2019, when I presented with Diane Manii MSW about our Ottawa lung cancer support group, disseminated information to community members, and influenced professionals to do more for those affected by lung cancer. This was the first IPOS conference to be “patients/survivors included”, and five of us earned scholarships. Together we five also wrote an article about the experience. A gifted thinker and communicator, Vicky was the driving force and major contributor to that article. She also did a TED talk! Here’s the link to her TED talk.
Research matters, and it is best when multidisciplinary teams work together, with thoughtful, authentic survivors’ voices clearly heard. Public and patient engagement matters!
On Monday March 14, The Ottawa Hospital Cancer Centre lab drew blood to be analyzed by Canexia in Vancouver, British Columbia, to test to see if there is a treatable kind of cancer attacking me. We’re still waiting for results and holding onto hope.
Biomarker testing matters.
If the testing comes back with information about a treatable cancer, then taking daily pills could potentially turn my health around. Many lung cancer patients go from extremely poor health to feeling quite well in only a matter of days, once they start taking the right treatment (targeted therapy pills). This is what we are hoping for me. New research, as you probably know, is a game-changer for many people affected by cancer. We are hopeful that there will be some effective new research that will make a difference for me.
It’s possible that I may have to travel to get access to the pills through a clinical trial. We won’t know until we get information from the test. As many of you know, there can be challenges for people affected by lung cancer to get access to the life-extending treatments they need. Advocates fight for drug approvals and funding, for better access to clinical trials and for clinical trials to be offered in more geographical locations. Access matters.
Research matters – it matters for testing, for treatment options and for access to those treatments. Research matters, to me and to so many others, for people with lung cancer and so many other kinds of cancer. Advocacy matters! Research matters!
Before I met Kim MacIntosh I knew I would like her, because of the way my friends were speaking of her.
I couldn’t go to the World Conference on Lung Cancer in Toronto in 2018 because I had suffered progression. Andrea and Peggy promised to tell me all about it when they came back, and they did!
There were so many exciting stories: people they’d met, promising new research, fun times, but of all the details in all the stories, Kim was the person who stood out by far! I couldn’t wait to meet this lung cancer survivor advocate that I’d heard so much about.
Kim started driving in to our Ottawa lung cancer support groups – more than an hour each way, and she fit right in with the group. It was so good to get to know this lung cancer sister.
Kim cared about people. She deeply loved her family: husband Dean and daughters Ceilidh and Sadie, her parents, siblings and extended family; and friends, especially her besties. She spoke often of them and participated in all kinds of traditions with them that filled her calendar with meaning, joy and laughter. She knew half of Cornwall, and a good deal of other people as well.
Before Kim was diagnosed with lung cancer she worked as a nurse and had a fierce passion for advocacy. Kim brought her medical and scientific knowledge, her understanding of how the system works, and her prior passion for people and advocacy to her lung cancer advocacy. She could often be overheard encouraging people to apply for their disability parking pass or tax credit, reminding them that they were entitled to it and telling them step by step how to go about applying. Kim cared about people.
Andrea and I compiled this list of highlights of Kim’s lung cancer advocacy:
– early member Ottawa Lung Cancer Support Group (October 2018)
– IASLC World Conference on Lung Cancer, Toronto 2018
– staffed outreach tables at The Ottawa Hospital Cancer Centre
– shared her cancer story at the Ottawa Lung Cancer Patient Summit, November 2019
– went to LUNGevity conference in Washington DC, 2019
– member of the EGFR Resisters
– started the EGFR Canada fb group
– early leader in the Canadian Lung Cancer Advocacy — Breathe Hope fb group
– very strong presence on Twitter and on fb. Shared lots of research etc.
– co-designed the Lung Cancer Strong tee shirts and organized the ordering, printing and distribution
– completed IASLC’s STARs Program in 2019 and attended WCLC 2019 in Barcelona
– participated in June 2019 CCSN/LCC Breakfast and meetings with MPPs on Parliament Hill
– made a video on her experience as a LC patient for CCSN’s Right to Survive campaign
– did a podcast for LCC with Dr. Paul Wheatley-Price
– member of Programs Committee, Lung Cancer Canada
– participated in The White Ribbon Project for lung cancer awareness and travelled in both Ontario & Quebec distributing white ribbons to lung cancer patients, advocates & medical staff
Kim was a good friend to many, a devoted wife and mom, and a fierce advocate for lung cancer and other important causes. She was deeply loved and she is missed. RIP, Kim, and thank you.
Kimberley Ann (Moran) MacIntosh September 30, 1967 – November 17, 2021
Lung cancer advocacy offers a world of opportunity! A variety of sizes and shapes so that everyone who wants to stand up for people affected by lung cancer can find ways to apply best practices to make a difference!
Let me give you a small taste by telling you about my day yesterday, and some of the terrific teams I get to work with …
International Health Advocate Chris Draft called from Atlanta yesterday morning. Great call: inspiring and energising! Team Draft invests in lung cancer advocates: supporting, training, encouraging. Chris is a strategic big picture thinker, always challenging people and organizations to leverage opportunities to do even more good for people affected by lung cancer. #Grateful
A team from The Ottawa Hospital Cancer Centre is working on a resource package that will go out (on paper and electronically) to people who are newly diagnosed with lung cancer. This project matters because it helps fill a gap in patient care. We are a diverse team, representing all key groups: administrators, nurses, psychosocial oncology, doctors, and survivors. This diversity is important to ensure that the package will be as effective as possible, and that it will actually get to people. I spent some of yesterday working on the letter from survivors that is part of the package.
What happens after lung cancer researchers apply for funding? A team of reviewers invest many hours carefully reading their research proposals, discerning strengths and weaknesses and evaluating, then gathering to discuss which they will recommend to receive funding. I spent time yesterday reading a research proposal as part of a review process.
The Patient Representatives Team of the Canadian Cancer Trials Group (CCTG) met (online) yesterday, so (among other things) I got to hear research updates from some amazing people, and present what’s happening with the lung site. Clinical trials are getting back on track after some things had slowed down due to COVID. Good news! Research matters!
The Canadian Cancer Research Alliance is supporting a project to gather recommendations for cancer research. I applied and was honoured and humbled to join the team. We were each asked to submit our five key Canadian cancer research priorities. What cancer research do you think is most important for the coming years? Yesterday the Ontario team met to discuss the priorities we had submitted, and worked together to discern the most important. Other regional teams will be meeting in days to come, and the rest of the process will unfold. What a tremendous opportunity to together influence Canadian cancer research priorities! Our voices matter.
There is a new CCTG lung cancer research idea that has been worked on and debated about for months. I’m excited about it, and have spoken up for it in CCTG Lung Executive meetings. Yesterday another CCTG patient representative and I agreed to be involved as collaborators on the grant application. Research brings hope!
There are many opportunities for lung cancer advocacy. We need more people to step up and be part of the team! I enjoy investing a lot of time and energy, but you don’t have to do the same things I do. There are a wide variety of opportunities to make a real difference! We need people with different skill sets to bring their unique abilities and commit whatever amount of time they choose. It’s up to us. Advocacy matters! #Team
Every day I give thanks for terrific teams and advocates, and that I’m well and able to do this work. Please don’t hesitate to reach out if you have questions or comments. #ResearchMatters #Hope #Gratitude
Early data indicates that Repotrectinib shows promise for treating people with ROS1 or NTRK lung cancer! Turning Point Therapeutics is working with the US-FDA to modify this clinical trial to potentially accelerate approval times.* We are very excited about this future potential for our friends with ROS1 or NTRK lung cancer!
John has been living with NTRK lung cancer for 6.5 years. Thanks to his oncologist, Bayer, and permission from Health Canada, he has been able to take Larotrectinib (which targets NTRK cancer) for the past 16 months. Data from the phase 1 clinical trial for Larotrectinib (LOXO-101) was presented in 2016, showing that it works well for people with NTRK. In 2019, Larotrectinib (“Vitrakvi”) was approved by Health Canada, and not just for lung cancer. Larotrectinib (“Vitrakvi”) works against NTRK cancer in multiple sites, including colon, melanoma and thyroid. Most importantly for John and those who care about him, Larotrectinib is working well for him. Research matters, and so does access to new treatments.
This may be the first time you’ve heard of NTRK lung cancer. It is one of the more newly talked about kinds of lung cancers. It is only in recent years that we’ve had treatment options for it, and many cancer centres in Canada don’t even test for it yet. I often wonder how many people there are who have NTRK like John, but are not receiving the appropriate treatment because they’ve never been tested for NTRK.
If people who are diagnosed with lung cancer don’t get biomarker testing, then no one knows what specific kind of lung cancer they have. Biomarker testing matters, because if we don’t know which specific kind of lung cancer, they can potentially miss out on years of good quality life. That is unacceptable. 100% biomarker testing matters.
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 ResearchCancer 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.
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
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.
The pipers are lung cancer fundraisers. Cheers to all who fundraise for lung cancer. Cheers and thank you!
Cheers to all fundraisers in the Super Bowl Challenge! Here are the current Top 5: Team Angie Downs & Fred Hutch Lung Cancer Research Center / Seattle Cancer Care Alliance; Lisa Moran & Lung Cancer Colorado Fund; “Team Hope,” (Christie Malnati, Sandy Shea and Kathy Weber) & International Lung Cancer (ILC) Foundation; Gina Hollenbeck & Baptist Memorial Health Care Foundation Memphis; Dy Wakefield & The American Lung Association Charleston SC. Great causes! I urge you to give! I especially want you to support Team Jill, but above all, give to lung cancer, please! Everyone who fundraises is a winner because we are all raising funds for a good cause.
Team Jill is currently in 6th place, but that can change in a hurry! We are coming up to the deadline and it’s not too late to give!
Last year we placed 4th and the top 3 fundraisers were winners. Many of you told me you were watching the donations, ready to give more if it would bump us into top 3, but you didn’t give because your amount wasn’t quite enough.
Please don’t wait for someone else. Please step up now! It takes a #team to tackle lung cancer. We need everyone!
If all of us gave what we could, it might bump us into top 3. Whether or not it does, it would be money given to a good cause. So please give what you can, whether it’s $10, $100, $1000, $10,000 or more. Lung cancer research extends lives!
A clinical trial partly funded by The Ottawa Regional Cancer Foundation extended my life back in 2015. If not for that clinical trial, my kids probably would have lost their Mom at ages 14, 12 & 8. We are grateful beyond words to everyone who donated to make that clinical trial happen.
We fundraise so that other young kids won’t lose their Mom so young.
We fundraise because research extends lives of even the worst cancer killer by far (lung cancer). Every dollar you give makes a difference.
Every dollar helps. Please give what you can.
It’s not too late to give to lung cancer clinical trials. Please step up and give, #team!
Cheers to the clinical trials teams, oncologists, surgeons, clerks, cleaners, administrators, managers, volunteers, leaders, and everyone who is glue to hold it together and/or oil to keep things running smoothly. #Team matters so much! The work you do matters and we see you leaping and dancing and rushing around to do it well.
Clinical trial protocols are complicated and they can change, updates occur, and so many important details to track. Machinery must be working properly, instruments calibrated, supplies stocked, and so much more behind-the-scenes that we patients don’t notice. Thank you!
The work you do matters and our lives depend on you. Thank you #team!
We may not say it much, but we are grateful for you and the good work you do. Thank you! Extra thank you’s to those of you who are working during important family times this holiday season. Cheers to you!
An extra big thank you to all of you who put in extra work as our Ottawa Hospital made the EPIC switch to electronic records. May 2020 be better!
Extra thank you’s to Dr. Paul Wheatley-Price, Medical Oncologist who goes the extra mile, gets glowing reviews from patients, is President of Lung Cancer Canada, and ran the marathon in May for people affected by lung cancer. Every movement needs strong leadership. Thank you for generously giving your self and your leadership skills to lung cancer.
It’s not too late to give to lung cancer clinical trials. Please give in honour of our #team!
Clinical trials mean life for people with lung cancer. They not only make a difference for people in the future. Clinical trials extend lives right now. Clinical trials matter!
Hope Matters. We all need hope, especially in hard times. Everyone goes through them, and in the midst of the darkness, hope is an act of defiance.
In Spring 2015, my health was bad. After a year and a half of first chemo then targeted therapy, I was weak and concerned that there might not be any more treatment options for me. My kids were 8, 11 and 14.
We were incredibly thankful for the clinical trial that my oncologist told me about. It brought hope, and I eagerly signed up. I wrote about it at the time, and here in An Act of Defiance, where I told the story of asking my family to plant an apple tree for me for my birthday in the Spring of 2015. The pear tree immediately brought to mind this story of hope.
Apple trees take years to bear fruit. Would I live to see it? Only one way to find out! Fast forward to 2019: we have harvested loads of apples and are very thankful I’m alive to enjoy them. Choose hope!
Hope is an act of defiance! When times are tough we can run low on hope. Hope matters. We need to nurture the hope within us, and when running low on hope, ask for help! #HopeMatters
That clinical trial kept me alive for over a year and a half, long enough for new and better treatment options to become available. I’m on my second treatment line since that clinical trial. I’m alive (and so very thankful) today because of grace and that clinical trial.
Research works. It is working to help give more and more people longer and better survivorship! Lung cancer research matters because people matter.
Four and a half years later I am filled with gratitude for that clinical trial and all who funded it, giving me the gift of extra years of life, such important years that I’ve cherished with my family and friends. My kids are now 12, 16 and 18. We’re incredibly grateful for these years.
Four and a half years later I know from the depth of my being that research matters. Four and a half years later I keep shouting from the rooftops: RESEARCH MATTERS!
I’m raising funds this month, posting these 12 days of giving to lung cancer clinical trials. Please give generously: your gift could mean years of life for someone like me, and what a difference that makes for so many!
To celebrate SiX years of lung cancer survivorship, please give generously to lung cancer research!