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
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.
The Super Bowl Challenge is over, but the fundraising continues! It’s not too late to give to support people affected by lung cancer! Please note Team Jill’s new Canadian page 2020 link: http://donate.ottawacancer.ca/goto/teamjill
Going to the Super Bowl is the cherry on top of the real prize which is really about raising money and challenging our communities to stand up for people affected by lung cancer. The Super Bowl Challenge is over but the fundraising is not!
I’m here, alive more than 6 years after diagnosis. The lung cancer is controlled by one pill each day. We’re not ready to call this a chronic disease like diabetes, but for people with a diagnosis like mine, the median survival is 6.8 years. Those 6 years mean a lot. My kids have gone from being 6, 10 and 12 at time of diagnosis, to now being all teenagers. What a privilege, what a gift to be here with them! These 6 years mean a LOT!
Research matters! Research means more people with lung cancer will live longer. It is imperative that research is ongoing, and also that everyone diagnosed with lung cancer in Canada gets access to the best treatments available. That means biomarker testing and faster approval of effective treatments. Clinical trials give people access to new effective treatments.
It’s a shame we weren’t able to raise more money and create more access to treatments. We are continuing to work on opening up pathways: it shouldn’t be so hard to give money for lung cancer research!
Team Jill’s Canadian page has been migrated to its brand new 2020 link! Since that’s ready, Team Jill will be fundraising more actively again until the Feb. 3 deadline!
Once we raise $5000USD, 90% of the total raised will go to Ottawa lung cancer clinical trials. The other 10% will go to Team Draft’s excellent lung cancer initiatives.
Chris Draft gives tremendous support and leadership to lung cancer survivors and advocates around the world. He has made a strategic difference here in Ottawa, connecting with Louise and the Evening of Hope Team, Elizabeth Dessureault and her family, Kayla and Jordan MacWilliam and their community, and many more. We are grateful for him and his wisdom and encouragement.
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!
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!
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!
What is the connection between geese and lung cancer research? Why did “research” immediately spring to mind for the Sixth Day of Giving to Lung Cancer Clinical Trials?
The connection is the goose that laid the golden eggs. That is research. It may not feel like it to some researchers working away in their lab, but it is true!
This is a fabulously exciting time in lung cancer research! New treatments are being approved and people are living longer and better. We are expanding the horizon of the possible.
LUNGevity put out a compelling video last month with stories from people directly affected by lung cancer clinical trials. The link is below. Please take three minutes to watch it. “In the last three years, the FDA has approved more lung cancer treatments than in the last three decades, thanks to clinical trial patients.” The survivor stories are gripping.
I’ve been to just a few of the many conferences where lung cancer research has been presented this year, and it is phenomenal! There is no rush quite like the realization that thousands of brilliant and dedicated people are working hard all over the world to find cures for people affected by cancer.
We are seeing success! The research is working! New treatments for lung cancer are being approved at record rate! People are living longer and better.
We’re not there yet.
Research keeps laying golden eggs. Let’s be generous in our support.
Research works. Research matters. People matter. We need more research.
If you were thinking about giving me a Christmas present this year, or making a tax-deductible end of year donation, please give to lung cancer research here. Thank you.
Click here to see the video It will open up to another page where you can click on the big picture to watch it. You can also see individual stories if you click on the smaller pictures below. It was an honour to be part of this project, because clinical trials matter. Thank you, Linda, Jack, LUNGevity and the whole team. You did a great job!
#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #ThankYou
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.