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!
I’m alive today because of biomarker testing, research, and access to new treatment options. Yes, and great care from my oncologist, Dr. Garth Nicholas, and healthcare team at The Ottawa Hospital Cancer Centre.
I was diagnosed with stage 4 ALK+ lung cancer in 2013 when my children were only 6, 10 and 12.
I started on chemo, then four different targeted therapies … Most treatment lines lasted only a year or two; each gift of time meant more life, more time with family and friends, more opportunities to serve as a lung cancer advocate
Every month, every year has meant memories and milestones, opportunities to celebrate life and be with my kids as they have grown.
My youngest was just about to start grade one when I had a cold with a cough that wouldn’t go away which was eventually diagnosed as lung cancer. Now she is in grade 9, just started high school. My middle child can play almost every musical instrument and will graduate high school this year. My oldest, who was in grade 7 when I was diagnosed, is now in third year university, studying Electrical Engineering and Physics.
I can’t tell you how thankful I am to still be with them. Very thankful for biomarker testing, research and access to new treatments… and my terrific healthcare team.
Targeted therapy is such a game changer. New targeted treatments are so much better than chemotherapy – it’s a night and day difference – and these new treatments keep getting better and better!
Targeted therapy means more energy, more good days, more ability, more time for the people we love, more time for what matters, more life.
My children are my top priority. I am also passionate about lung cancer advocacy. I started on Lorlatinib in 2018, and it has given me great quality of life, so I have been able to invest about 30-40 hours a week in lung cancer advocacy.
This is an excerpt from a presentation I’ve been making (as part of a team) to a number of groups this month. Next come many slides with pictures and quotes from people affected by lung cancer, people who I love, who are like family to me. They are living life more fully, because they have access to new life-extending treatments called targeted therapies. These are people who matter and are worth fighting for. I’m honoured to “bring them with me” as part of these presentations, and appreciate very much their willingness to share pictures and stories with the goal of increasing access to new drugs.
The presentation is about the importance of fighting for people to get access for new targeted therapies, because this is a matter of life and death and people matter. Research alone isn’t enough. We need to enlarge the boundaries of our concept of research to also include biomarker testing and access.
What are new drugs worth if we don’t do biomarker testing to find out which people will likely benefit from the new treatment? With 100% biomarker testing we will know specifically which type of cancer more people have, and be able to match more people with effective treatments. With 100% biomarker testing, we will also be able to more quickly accrue more patients to our clinical trials so the trials will show results more quickly, and effective new treatments can get approved and funded sooner.
What is the value of researchers working hard to develop effective new treatments, if people cannot get access to them? Access matters. It is often a matter of life and death. We must work to close the gaps and make sure people can benefit from research. Could you imagine how hard it would be to be a dying cancer patient who knows there is an effective treatment that would very likely extend their life, but they can’t get access to it? How hard would it be to be the patient’s loved one? The patient’s oncologist?
Biomarker Testing + Research + Access = Life
On this World Cancer Research Day, let’s celebrate research and researchers! Let’s celebrate fundraisers, administrators and patient partners! Let’s celebrate the entire research team! Let’s broaden our concept of research and fight together for more people to benefit from effective new research.
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
“How did it go?” I can’t tell you how many times I’ve been asked that question the past few days!
I travelled to Toronto last week to meet with MPPs at Queen’s Park, to share my story with the hope that …
… and that’s the real issue. What was I hoping for? Well, you know how I feel about funding lung cancer research. Lung cancer causes 27% of cancer deaths in Canada but research only gets 7 cents for each cancer dollar. That’s not fair! I hope for lung cancer research to be fair!
Last week, though, we weren’t asking for research dollars.
On Wednesday morning, Canadian Cancer Survivors Network and Lung Cancer Canada hosted a #Right2Survive Breakfast, with quite a good turnout. Thank you to all of you who contacted your Ontario MPP. Many good conversations were had, and several people spoke from the podium. I took pictures whenever I remembered to, and a professional photographer was present. One of the MPPs told me her people were always telling her to take more pictures and tweet more. I finally had time to tweet during the train trip home! (I’m @JillHW – please follow me if you’re not already!)
I think my cards were an effective way to get across the main point from my story – that lung cancer research makes a real difference for families like ours (and is worth funding) – very powerfully and quickly. Access to innovative new treatments has extended my life! Everyone I gave my card to looked at it, and I think the message hit home.
I listened as MPPs shared personal stories of losing loved ones to lung cancer. Some of the people in the room were clearly already committed to the cause. Others seemed very interested and open to further conversations and deeper commitments. I was grateful for everyone’s presence there and spoke with as many as I was able. Many good conversations were happening around the room!
One speaker noted that lung cancer kills over 20,000 Canadians every year, the size of a small city every year!
Our three main messages for the day were: screening programs (save lives, time and money), lung cancer patients deserve timely and affordable access to innovative treatments, and patient voices must be heard!
After breakfast, several of us observed Question Period in the Legislature. What an interesting experience! (My first time.) For those who may not know, our provincial government has recently introduced a new plan for families with an autistic child or children. They claim it will help more families, but it works out to less funding per family. Families have been protesting, and that day quite a large number were in the gallery. One after another, members of the opposition introduced families and described their situation and how the funding changes would negatively affect them. It was very sad, very hard to listen to, but it reinforced to me the importance of telling our stories. Clearly the Opposition together had determined this was the best strategy to sway the Government, and I can tell you that it was powerful.
After Question Period, quite a few meetings were scheduled with MPPs. I wasn’t very nervous about meeting with MPP John Fraser, because I had sat beside him at the pre-election town hall meeting at which I spoke last Spring, and he was very encouraging. This time he expressed interest in our messages and appreciation that I had traveled all the way to meet him there in his Toronto office rather than in Ottawa. He honoured me by listening intently and saying how important my story is. My fellow advocates had many similar experiences in their meetings.
So, how did it go? To be honest, I’m not sure. I plan to ask the organizers what they think, once they’ve had time to process it. They’re the experts. I’m just a voice of lung cancer, telling my story, representing countless others, and trying to do that well.
I hope that it makes a difference – even the smallest difference. That’s what I hope for.