Time for an update about my health and treatment …
The lung cancer pill that I take daily is working very well, for the most part. Most of the cancer has shrunk and stopped acting like cancer, which is what the pills are supposed to do. But, cancer cells are not always all identical. In my case, right now, most of the cancer is under control, but some of the cancer isn’t. Some is growing and causing problems, so we need to take action.
I’m very thankful for my great health care team and the new addition to my treatment plan. We will add five radiation treatments to zap those pesky spots. Adding on some radiation is best practices, often called “weeding the garden”. Radiation starts on Monday, five days in a row, then back to taking the same routine of pills. Just a little bump in the road.
I’m very thankful for supportive friends who are giving strength and love, praying and offering to do groceries and bring meals and muffins. I’m thankful that I’ve been walking about 10,000 steps a day, stretching and doing weights. There is so much to be thankful for, including beautiful Fall colours!
So, good news that the pill continues to work effectively against most of the cancer. Good news that I’m in good hands with a solid treatment plan. Great news that I’ve got support. This is just a bump in the road, and we are holding onto hope.
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.
My hope factor increased today and I hope yours will as well! I got an update today that improved my world! Researchers are working on bringing a whole lot of good our way, and I can’t wait to tell you about it!
Over a year ago I participated in the American Association for Cancer Research Scientist <–> Survivor Program. Today through Wednesday, the AACR is putting on a Virtual Meeting on COVID-19 and Cancer. I really want to tell you about two virtual sessions I attended today: one about clinical trials, and the other about vaccine development.
I was very excited to hear the clinical trials forum speakers talk about how their clinical trial communities have reacted to world changes brought on by COVID-19. I’ve heard some people express fear that clinical trials might take a back seat to COVID-19, but there’s a lot more good reason for hope and optimism! Speakers in today’s forum described how they had worked creatively to overcome challenges, leverage tools and technologies, while focusing on patient safety and accuracy of data.
This pandemic has shifted the focus of many clinical trials to be more patient-centric. Researchers and doctors are finding that telehealth can work really well, and many tests are being done closer to home, sometimes even at home, thanks to the quick pivoting of regulators and investigators which makes clinical trials work effectively in these different times.
Decentralizing clinical trials improves and expands access. Clinical trials accrual is increasing, as is diversity. Underserved populations are being recruited, getting improved access to clinical trials. This is important good news!
Leaders in clinical trial research are not just reacting quickly to unusual times, they are also taking advantage of what they are learning to reimagine and work for a future with better, faster, simpler and cheaper ways of making innovative new life-extending therapies available to people affected by cancer.
The vaccine development symposium was fascinating, exciting and inspiring! Researchers are working at breakneck speed, crushing previous vaccine development records and producing hopeful results. Researchers made it clear that they are building on earlier work of MERS, SARS and other researchers who laid the framework upon which current work is built. Pandemic preparedness matters. #ResearchMatters
So grateful for front line workers, researchers and all who work to make research happen. Thank you.
More details about the events below these pictures from the awesome AACR Annual Meeting 2019 #AACR19 …
FORUM 1: REGULATORY AND OPERATIONAL IMPLICATIONS OF CANCER CLINICALTRIAL CHANGES DURING COVID-19
MODERATOR: KEITH T. FLAHERTY, MASSACHUSETTS GENERAL HOSPITAL BOSTON, MASSACHUSETTS
José Baselga, AstraZeneca, Gaithersburg, Maryland James Doroshow, National Cancer Institute, Bethesda, Maryland Kristen M. Hege, Bristol-Myers Squibb, San Francisco, California Paul G. Kluetz, U.S. Food and Drug Administration, Silver Spring, Maryland Patricia M. LoRusso, Yale University School of Medicine, New Haven, Connecticut Caroline Robert, INSERM U981 (Gustave Roussy), Villejuif, France
SYMPOSIUM 3: COVID-19 VACCINE DEVELOPMENT 2:20-4:20 P.M.
Introduction E. John Wherry, University of Pennsylvania, Philadelphia, Pennsylvania
Rapid SARS-CoV-2 mRNA vaccine development enabled by prototype pathogen preparedness Kizzmekia S. Corbett, National Institutes of Allergy and Infectious Diseases (NIAID), Bethesda Maryland
Pan-HLA prediction of SARS-CoV-2 epitopes* Katie M. Campbell, University of California, Los Angeles, California
Sequence-based prediction of SARS-CoV-2 vaccine targets using a mass spectrometry-based bioinformatics predictor identifies immunogenic T cell epitopes* Asaf Poran, BioNTech US, Cambridge, Massachusetts
A computational approach to identify a possible SARS-CoV-2 vaccine from receptor binding domain peptide sequence on spike glycoproteins* Majid Al-Zahrani, King Abdulaziz University, Jeddah, Saudi Arabia
Synthetic DNA for EID outbreaks including SARS-CoV2 David Weiner, The Wistar Institute, Philadelphia, Pennsylvania Closing Remarks / Discussion E. John Wherry
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.
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.)
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.
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?
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.
HUGE THANK YOU to all who have given so far in our 12 Days of Giving to Lung Cancer Clinical Trials!!
THANK YOU for giving to lung cancer clinical trials!!! You are making a difference for people now and into the future! It takes a team to tackle lung cancer. Thank you #team!
Your gift will help people living with lung cancer experience longer and better survivorship, and it will contribute to the eradication of lung cancer. That means so much. Thank you.
Huge thank you to Team Draft and Chris Draft for your hard work putting on the Super Bowl Challenge, developing leaders and supporting people affected by lung cancer around the world. You make a real difference. Today marks eight years since Keasha Draft’s passing. Chris, you have put in far more work than we realize and you deserve far more appreciation than we show. THANK YOU.
Sunday the 29th is the last day to give to the Super Bowl Challenge, but we will continue to accept donations for clinical trials into January. I’ll be honest with you. I would LOVE to win the Super Bowl Challenge, earn a trip to Florida in the Winter, the experience of a lifetime and opportunity to share lung cancer’s story with that huge platform … but …
What really matters is that we pull together as a team to tackle lung cancer. What matters is that we rally together for better care for people affected by lung cancer. Clinical trials matter because they actually extend lives.
Anyone can get lung cancer. I am frequently contacted by people shocked and saddened by a diagnosis, whether their own or someone they love. Lung cancer affects almost everyone.
Research is changing the story & saving lives, so we need more research! I have a deep passion for driving change in this field and sadness that so far we have raised less than $1000.
It’s not too late to raise more money for lung cancer research!
It takes a #team to tackle lung cancer. Join us!
Would you please consider giving if you haven’t yet? Would you have family or friends who you might ask to give to this important cause? Please invite them. This is a good year end tax deductible investment. It could extend your own life or the life of someone you love.
It’s not too late to give to lung cancer clinical trials. Please give, #team!
What do you think of when you think of lung cancer?
Before I was diagnosed, I did not know much beyond the connection between smoking and lung cancer.
For decades, an enormous anti-smoking, lung cancer prevention campaign has been waged. Huge amounts of energy and funding have been invested, but prevention alone is not enough. In spite of prevention efforts, the Canadian Cancer Society estimates that 29,300 Canadians will be diagnosed with lung cancer in 2019. That’s the size of a town.
A town-full of people diagnosed with lung cancer each year.
Clearly a prevention campaign is not enough.
Candid conversations which evaluate the past and examine the present shine light on paths into the future.
It’s time for lung cancer to shift to a well-rounded campaign which dedicates appropriate resourcing to five pillars of lung cancer:
Awareness, Early Detection, Treatment, Research and Survivorship.
When we allocate funding appropriately, we will drive change in lung cancer survivorship.
A town full of people each year! Who will get lung cancer next year?
Anyone can get lung cancer.
The research we fund today might extend your life.
All it takes is two. Put two lung cancer survivors together and anything could happen! Get three together and it could be a support group!
There’s nothing like meeting someone you really connect with! It has happened time and time again, the spark, the recognition that someone else gets it, they understand your experience, and they care.
Two survivors together is powerful. There is strength in numbers, and two is enough. Get three and now we’re really cooking! There is no telling what could happen!
Two survivors plus a social worker or psychologist, or any third who is willing to lead, and all kinds of good could come of that. Just ask Alyson and Christine about what happened in Winnipeg less than a year ago. The lung cancer support group they started in Spring of 2019 stood up and clapped with gratitude for them. They just celebrated the holidays with a party this week! What a difference this support group is making! Way to go, Alyson, Christine, Mike, Kelly and team!
It may seem hard to start a support group, but it’s not too hard. People do it all the time. Support groups are best practices and they do good for people around the world. It’s not too hard to start one. There are courses in leading groups, lots of books, experienced leaders, and other resources to learn from. Right in cancer centres all over the world, there are loads of trained, caring people working in psychosocial oncology. It’s not too late to learn. Alyson and Christine asked a lot of questions when they were getting started, and a social worker here in Ottawa helped them connect with teammates in Winnipeg. Reach out! Ask questions! Support groups are best practices, and lots of people could benefit if we had more of them.
We’re very grateful for the lung cancer support group in Ottawa. It was started (in October 2017) by Social Worker Diane Manii and a team here in Ottawa, with Lung Cancer Canada and the Ottawa Regional Cancer Foundation. It continues with their support and the support of The Ottawa Hospital. There is much generosity toward the Ottawa support group, and strong support within the group. The group has also started reaching out at the Cancer Centre with monthly hope tables (since August 2018) which are greatly appreciated. The group participated in Ottawa Race Weekend (#LungCancerStrong) in May 2019, raising funds as “Lung Cancer Team Canada” for Lung Cancer Canada, and growing numbers are participating in political advocacy for lung cancer.
I’m very grateful for the women and men I’ve met through our Ottawa support group. They are silver linings of lung cancer.
If you don’t have a support group and you would like to explore starting one, please start looking around and asking questions. You may be in an area where it may not look like there are enough people or resources for a lung cancer specific group, but don’t let that discourage you. People are willing to help; reach out!
Once you have three, there’s no telling what you can do!
To celebrate support groups and survivorship, please give generously to lung cancer research!
Here’s to all the care givers, whether family or friends, and neighbours and even strangers who reach out with care, knowing that people going through lung cancer, or any tough time, need extra care. It’s not good to be alone. We all need team. Cheers to the people who reach out with kindness, compassion, care, comfort, empathy, gentleness, grace, support, understanding, muffins, meals, encouragement.
We all benefit from from kind words and actions. How much better our world is when people are uplifting, inspiring, cheering, caring and giving.
Reverend Dr. Martin Luther King said, Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.
Cheers to all the people who shine a light. Cheers to everyone who makes this world a better place by walking – even part of the way – through the valley with someone who has received difficult news like a lung cancer diagnosis. Cheers and THANK YOU.
It’s not good to be alone. We are better together, stronger together. #TeamMatters
Cheers to everyone who makes a difference through caring!
To celebrate care givers and survivorship, please give generously to lung cancer research!
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!