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.
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.
Thank you for supporting Team Jill in the Super Bowl Challenge! Together we raised over $1000., whether you count in Canadian or American dollars! That is over $1000 that would not have been raised if Team Jill hadn’t taken action to raise lung cancer funds, and if some of you hadn’t taken action to give them. Thank you! Thank you also for your many encouraging words of support, the “likes”, retweets, shares, etc. This kind of support matters too! While writing this, another person gave $50. Thank you!
All together so far, the Super Bowl Challenge has raised over $77,000 USD. That is money that might not otherwise be raised for lung cancer. The SBC has ended, but you can still give until Feb. 3rd. Thank you Chris Draft and Team Draft for the work you put in to make the Super Bowl Challenge happen this year. What a great opportunity for cancer centres and other charities to raise funds and get huge publicity for the important work they are doing!
As the year-end draws near, I’m thankful for life and meds that help keep me healthy, thankful for all I was able to accomplish this past year. A lot of the work I’m doing is new for lung cancer. For example, I’m the first Canadian Cancer Trials Group lung site patient representative who has been affected by lung cancer. Before my oncologist asked me to sign up, Carol had been kindly representing lung cancer patients, even though her cancer experience was a different kind of cancer. We owe a debt of gratitude for the good lung cancer work being done by people not affected by it. Much lung cancer work has been left undone. Many groups are only starting to wrestle with how to include the patient voice. Some are not yet convinced of its value. Being the first in new territory is harder, like carving a path in the jungle. (My University degree in Engineering where I was sometimes the only woman in classes of a few hundred men, and summer work where there was no women’s washroom, helped prepare me for this, along with summer work tree planting and working as a surveyor – not in a jungle, but in all kinds of terrain in the Ottawa region.) I work, not just to do the work, but also to carve paths to (hopefully!) make it easier for others who will come after me.
There are a few interesting projects in the works, which may be announced soon. I’m also sharing my story at my hospital in January, and continuing with my usual volunteering as patient representative for the Canadian Cancer Trials Group, The International Lung Cancer Foundation, and at The Ottawa Hospital. Our monthly support group and outreach tables at the Cancer Centre will be ongoing as usual. Too many to list them all!
Here’s a great opportunity for anyone affected by lung cancer in the Ottawa area. Back in November, Dr. Dugald Seely, Founder and Director, Ottawa Integrative Cancer Centre and Prof at uOttawa, set up a meeting with Andrea Redway and me. He wanted input from people with lung cancer experience as his team worked on developing a program for people affected by lung cancer. (He had also spoken at our summit in November.) So nice when others take the initiative for lung cancer. The free program starts January 23, and runs Thursday afternoons. Here’s the link for info and registration. Thank you, Dugald and OICC!
As 2019 draws to a close and we make the most of each last day that we are given of this decade, I have been doing a lot of reflecting. I may share some of it with you, but in case I don’t blog again before January, Happy New Year to you and yours! May the next decade be filled with love, joy, peace and thankfulness.
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!