ASCO, The American Society of Clinical Oncology Annual Meeting, is the world’s largest cancer conference, and it’s happening now, in Chicago and also with online sessions. This year’s theme is: Advancing Equitable Cancer Care Through Innovation #ASCO22. You can check out the program, which features over 200 sessions, here. The online platform includes 85 livestream sessions and more than 2,500 poster presentations.
Our session is Tuesday morning: Where Do You Go When You Put Your Best Foot Forward? Challenges After Upfront Use of Next-Generation TKIs in Driver-Mutated NSCLC. We have a 60 minute panel session during which we will discuss cases in an interactive manner with the audience. For example, we’ll have Question and Answer, Multiple Choice Questions for the Audience, and a “Likely Scale”. Should be fun! Here is the team:
An International Academic Oncologist Perspective
North American/Community Oncology Perspective
A Patient Perspective
A Radiation Oncologist Perspective
Last Fall when I said yes to this exciting opportunity, the ASCO organizers emphasized that it was important for all presenters to be physically present in Chicago for ASCO, but since my health declined I’m now unable to travel. I reached out to the ASCO team to ask if it would be possible in this case to present virtually. Very grateful that the ASCO team highly values the survivor advocate perspective and is willing to work for a process for virtual participation. It’s great to have good teammates!
Speaking of good teammates, a big shoutout to Chris Draft who has been making The White Ribbon Project Ribbons and delivering White Ribbons in multiple languages to many people at ASCO this year, including some of my co-panelists. Thank you, Chris and Team Draft!
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!
This is a good time to let you know that I’ve been experiencing some shortness of breath. It has suddenly gotten much worse, and yesterday a phone call to the nurse updated the team with that news. She thought we should try to move the date of my CT scan up, and took steps to make that happen. I got a call on Thursday afternoon with a reschedule for late Friday evening instead of next Friday. Very thankful for a good care team and the opening at the hospital.
When my friend dropped me at the main entrance to the General campus of The Ottawa Hospital, I thought I would be able to walk (slowly) to the CT scan module, but it turned out that I couldn’t even make it to the COVID screening station. I sat in a wheelchair that was “parked” nearby and texted my friend who came straight away and wheeled me to my CT scan, then to Emergency. A kind nurse there (who had lost both parents to lung cancer) hooked me up to oxygen, and my blood ox is now at 100%. I’m feeling so much better!
Obviously we need to figure out what’s going on and come up with a plan, so we’ve run a few tests and are waiting for results.
I plan to update you again when we know more.
Just checked again and the monitor says my blood oxygen level is still 100% – what a great feeling. Very thankful for oxygen.
That was quick! This morning I received a call with an appointment for my port line to be installed. This is scheduled to happen on Thursday February 17 at 7am. The procedure takes about 45 minutes and is done with conscious sedation. I’ll be there for about 3 hours and won’t be able to drive myself. I should be able to make it to chemo later that day, and the chemo nurse should be able to use the port that day for chemo #22. We know that things can get rescheduled, especially during COVID, but the plan is for me to get a port in just over 3 weeks! That means that this coming Thursday may be the last time nurses need to hunt for a vein to give me chemotherapy. Very exciting! Very grateful!
What a great healthcare team! Yesterday afternoon four skilled and caring nurses give great care at my chemo appointment (you can read that blog post here), and yesterday evening my terrific oncologist, Dr. Garth Nicholas of The Ottawa Hospital Cancer Centre, read that blog post and reached out. We exchanged messages so I could ask questions about the pro’s and con’s of ports and PICC lines. I was pretty sure I would go with a port line before messaging with Dr. Nicholas, but it was good to hear his thoughts in addition to the information in the brochures the nurse gave me yesterday afternoon. Even before the conversation he thought I would want the port line because he pays attention and knows me well enough to know.
Yesterday evening Dr. Nicholas submitted the request for a port line, so it’s already (!) in process and I’m very thankful. There are no guarantees since the request needs approval from the appropriate team for the procedure to take place. I’m very grateful to Dr. Nicholas for submitting the request so quickly and advocating for the port line in that request. Health care providers matter. Advocacy matters. Thank you, Dr. Nicholas, for being an advocate.
Chemo number 19 down this afternoon! I’ve been getting chemo every three weeks since November 2020 and we are so very thankful I’m still going strong. Nineteen rounds, over a year … this is worth celebrating!
Some people are afraid of chemo and / or very reluctant to take it. Chemo is way easier than it used to be. Everyone is unique and chemo affects everyone uniquely so why not give it a try? I’m finding it’s doable, even after a year, even after eight years of cancer treatments. Every three weeks there are several days when I’m very tired, and there are a few other side effects. This is hard but not too hard with plans in place and a good support team. I started chemo with the hope that there would be a new treatment, a clinical trial ready for me maybe even as soon as last summer. I keep hanging on, hoping for research to come through for me and others like me. More research means more survivors and better survivorship.
So many of us are making the most of the gift of time we are being given, doing our best to live well with lung cancer and/or other kinds of cancer, reach more milestones, make more memories. I work hard at advocacy and supporting people diagnosed with lung cancer and other kinds of cancers because I know it really matters and it makes a difference.
Chemo can bring a mental and / or emotional battle as well as a physical battle. I remember well the very first time I had chemo, back in December 2013, five days after I was diagnosed with stage four lung cancer. I had worked so hard to take good care of my body by living an active life, eating healthy, and using only natural, toxin-free products, and here I was at the cancer centre to have a hole poked in my arm to inject toxic chemotherapy. I cried. I still find this process challenging, but I know it’s worth it because although it brings some harm to my body, it’s kicking cancer to the curb. Every scan this year has been good news that the cancer is stable or slightly smaller. So thankful! Definitely worth it!
After eight years of constant treatments (mostly targeted therapies which are generally much easier on people than chemotherapy is) like so many others I’ve suffered a long list of treatment-related side effects, many of which have lasted through these eight years. Like many other people I have experienced nerve damage, especially to the hands and feet, hearing loss, vision changes, skin problems, digestive issues, changes to nails and hair, and many other things. Survivorship is good and it can bring challenges.
I’m very thankful for over a year of chemotherapy which has helped bring my total up to eight years of stage four cancer survivorship. With so many others affected by lung cancer and other cancers, we hold onto hope for a clinical trial or other form of new treatment that will work for us and keep us going strong for years. I know beyond a shadow of doubt that things can change in the blink of an eye! Having lived in Ottawa Canada most of my life, I’ve seen Winter melt into Spring each year and this helps reinvigorate hope and faith! Yesterday I drove into the Cancer Centre for blood work through such ice and snow that had to use my memory and imagination to figure out where the street lanes were. Today it was mostly melted, the sun was shining and the temperature was a balmy 14 degrees Celcius (57 degrees Fahrenheit) with a beautiful breeze! Such a gorgeous and rare weather experience for December in Ottawa Canada!
I got back home in time to see a lovely friend from church who brought a five-day feast (from her and two other dear souls) for the kids and me, then a few calls and messages from caring, supportive friends. Grateful for many kind friends who make being on chemotherapy so much more doable. It takes a team. We all need support. So much to be thankful for!
Nineteen rounds down and hoping for much more research and many more treatment options for people facing cancer!
I first met Heidi in a Zoom call organized by Team Draft the summer of 2020. Right away it was easy to see that she is a loving person who genuinely cares about people. A few months later she told us (in a zoom call organized by Team Draft) that she was fed up with her cancer center’s reluctance to promote lung cancer awareness, that she had asked her husband Pierre to make a big white ribbon for their door, and then they started making them for friends and strangers. She generously sent them out to everyone on that call, even me in Canada. I was the only Canadian on that call and, knowing that international shipping can be expensive I didn’t want to ask. Heidi’s love and generosity made my concerns seem ridiculous. She wanted to give ribbons to everyone willing to stand up for lung cancer, to make people feel cared for. Heidi is rare and meeting her was very special.
Those first few ribbons have multiplied into a movement! Hundreds of lung cancer advocates are rising up with their ribbon, taking photo’s and posting on social media, raising lung cancer awareness across the US and Canada, and the Netherlands, the Philippines, Ireland and expanding across Europe in partnership with Lung Cancer Europe, as well as other growing international partnerships. Together we are driving change.
Heidi and Pierre have made 832 ribbons, and also assisted at other builds as they traveled around the US on The White Ribbon Project Tour. Heidi and Pierre have paid for all the ribbons they have made and sent, and all their expenses on the six-week tour. As they travelled around, rather than taking donations, Heidi and Pierre encouraged people to invest in their local community, to form a team, host a build or contribute to one, participate in making ribbons with love and giving them with love. Teams have been forming in many communities, and this is where the action happens!
We are very grateful for teams in Canada like Lisa and Bill Weir who have made 244 ribbons, Alvin and Carolanne Johns who have made 45, the Monds’ team who made 20, and others who are in process of team building.
The Ottawa team held a community build in solidarity with The White Ribbon Project Tour. People contributed their time, talents, supplies, food, drink, even hand sanitizer. In keeping with the inclusivity of The WRP, patients, caregivers, survivors, family, friends, doctors, nurses, administrators, politicians and others were invited. There was much love and laughter at our outdoor venue that hot August afternoon. What a gift to be together, building relationships as well as ribbons, loving and serving our community.
The Ottawa team knows that advocacy is relational work which doesn’t just happen during Lung Cancer Awareness Month in November. We are committed to making people aware and making people feel loved year round. That’s why we set up outreach tables in our cancer centre to welcome people, show them love and give them information. We started annual summits to gather the community and offer learning opportunities. We also gathered a team to put together a welcome package which includes a letter from lung cancer survivors with contact information. This is given out year round, to everyone newly diagnosed. The Ottawa team made a choice to be involved in making people aware, and making sure people know they are loved.
What is your cancer centre doing for Lung Cancer Awareness Month this November? What is the plan for lung cancer every day?
The White Ribbon Project is committed to making sure people affected by lung cancer know they are not alone. Together we are committed to changing the public perception of lung cancer. Together we are driving change. It takes a team of people who decide to take action to get the job done. Let’s work together!
Cheers to the researchers, and the whole team who has helped keep this mom of three alive for seven years since a stage four lung cancer diagnosis December 2013!
I’m so grateful to be here! My life is enriched through knowing and spending time with a variety of very special people (whether online, on the phone or in person). I’m blessed with dear friends and meaningful work as a lung cancer survivor advocate. This weekend, two of my fellow lung cancer survivor advocates sisters gave our family this feast to celebrate my seventh “cancerversary”, along with a beautiful card. Thank you, Andrea and Kim! (photo’s of people all taken before COVID).
This seventh year has meant a lot because my youngest turned 13. She was only 6 when I was diagnosed, and she doesn’t have many memories from before then. During these seven years she has grown and matured, and I catch so many glimpses of the amazing young woman she is becoming. Now we’re in this brief, sweet spot where all three are teens. Parenting adolescents isn’t easy, but it’s a privilege and there is so much joy. The oldest is doing well in his second year of Electrical Engineering and Physics at University, and the middle one is currently enjoying a high school co-op placement perfectly suited to him and his love of music and music education. What a gift to walk with them through this season! #ResearchMatters
Here are some photo’s of the kids from the past seven years. We are so grateful for milestones and memories!
We owe a debt of gratitude to the researchers who, through creative brilliance, steadfast discipline and diligent tenacity navigate the twists and turns, false starts and dead ends that form the research pathway from bench to bedside, from idea to effective treatment.
And the whole team of administrators, statisticians, economists, funders, panel members, visionaries, regulators, encouragers, and so very many more very necessary and important team members, Thank you!
Way to go, team! Thank you! Thank you for working to keep me alive these seven years! On behalf of family, friends and communities, THANK YOU!!!
We had no idea I’d still be alive seven years after diagnosis. Please keep working hard with urgency so that I and others like me can live longer and better!
Many thanks to all you who have prayed, called, and messaged this week while I’ve been undergoing daily radiation treatments. I’m very grateful for your care and support. Cancer can be hard in many ways, and many of you know firsthand what it is like to be diagnosed or to walk with someone diagnosed with cancer.
We all need support, and this week has powerfully reinforced the difference supportive caring people make for someone facing cancer. Treatments this week have been challenging, and your words and actions have tremendously encouraged and helped. Thank you.
Never doubt the difference you can make for someone.
This is why I’m so passionate about lung cancer support groups. They can make a huge difference! It doesn’t take much to start one up. If you’d like to talk about it, please reach out. Helping get another support group going is definitely something worth investing time and energy in!
Four down and one to go! I’m so grateful I’m not journeying alone.
(All photo’s were taken prior to COVID-19, except the one of our Ottawa lung cancer support group meeting by zoom.)