I’m so grateful for friends! Several of my friends are Speech-Language Pathologists, which means that they are experts who do tremendously important work helping people communicate better. Some S-LP’s are experts in helping people swallow better, and today a swallowing expert colleague of one of my S-LP friends came over to watch me swallow a variety of things and give me information about how to avoid choking or aspiration pneumonia. I learned that while swallowing is something we generally do without much thought, it’s actually quite complex and there are many ways it can potentially go wrong. I’ll need a barium swallow test (which involves ingesting radioactive food & drink, and watching what happens to it) to give us more insight into what exactly is going on when I am swallowing.
I was very grateful for the swallowing expert who came over today. She taught me about the mechanics of swallowing, and gave me a long list of practical tips to help things go down more easily. I feel more empowered to fuel my body better with less risk.
The very brief summary of the plan is to patiently stick with puréed soup and other soft mushy foods. Definitely worth it if that means avoiding pneumonia!
I’m so very grateful for friends and colleagues of friends!
Well, that bump was bigger than expected! Sadly the radiation in October did not do the cancer-crushing work we were hoping it would. My recovery wasn’t going as well as anticipated, and tests showed I had pneumonia as well as cancer growth. My oncologist and I discussed chemotherapy, which is the only treatment option available to me currently.
My oncologist and I both reached out to some Canadian lung cancer researchers to investigate whether there might be a clinical trial suitable for me available in Canada, either now or in the near future. I was disappointed but not surprised to learn that there is nothing on the horizon.
There are some possibilities in the US, so I applied for the “ALK Second Opinion Program”, which is funded by some generous people affected by the same kind of lung cancer that is affecting me (ALK). I learned within a couple of hours that my application was accepted, so the program will pay for me to have an online appointment with one of the top ALK researchers in the world. I have met most of the doctors on their list, and it is a tough decision because they are not only brilliant but also very kind. I plan to go with the Boston team because, although Dr. Alice Shaw is not spending much time seeing patients there now, they may have a clinical trial appropriate for me in future, and Boston is much easier to travel to than Nashville or Colorado. My oncologist has very kindly offered to participate in the online appointment with me, and one of my dear ALK sisters has offered to walk with me through this process. I’m very grateful for the support.
I had my first chemo of 2020 on Monday November 30. It hit pretty hard, and I had to go to emergency with a fever which turned out to be another round of pneumonia. Antibiotics helped a lot, and I’m feeling much better. I’m still very tired, coughing a fair bit, and having problems swallowing (since August). Thankfully there is soup, and I’m very grateful for friends who have brought so much soup!! It’s great to have different kinds of soup that I don’t typically make, and it’s so nice to not have to make it myself!
My next chemo is Monday December 21, which will get me through the holidays, as my awesome oncologist noted. The following one is scheduled for January 11. Apart from the blood tests on the Fridays before, I’m hoping to not need any additional hospital visits! 😀
This is quite a change from the targeted therapy lifestyle, which tends to be much more smooth sailing, with fewer appointments and blood tests. I’m so very grateful for my many years of reasonably good health while living with stage four lung cancer. I never expected to live seven years past my diagnosis, and now I have much more hope than I did at diagnosis. I am hopeful for new treatment options. I hope that the chemo I’m on now will work more effectively with fewer side effects than the older harsher chemo I took in 2013-14. I hope researchers will develop new treatment options that will be available just when I need them. That has been my roller coaster adventure ride with lung cancer these seven years, and I hope for more! Oh yes I do!!
More than that, I hope for more research to extend the lives of many more people affected by lung cancer, because there are so many of us and we all want life and need hope. So if you know any lung cancer researchers, please thank them for the good work they are doing and encourage them to keep up the good work with diligence and urgency. So many of us are counting on them!
I’ve worked hard to keep doing light weights, stretching and walking through the Fall. My daily step count has fallen below my usual 9000-10,000, but I haven’t given up hope!
So grateful for friends, for so many delicious soups (and other yummy things!), and for so many calls and messages. This has really sustained me and helped keep me buoyed up.
I don’t talk about my faith a lot, and I would never want anyone to feel like I’m pushing Christianity on anyone. I want to be clear, please stop reading if you are feeling offended. My relationship with God means so much to me, and keeps me going. God is good all the time, and I am grateful for the love of God poured out through Jesus, and the ever-present comfort of the Holy Spirit. It’s the love of Jesus that motivates my advocacy, and any good I do is because of God working through me.
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.)
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.
A team of five cancer advocates are excited to announce that the article we wrote was published today!
A year ago today, Diane Manii and I were travelling to Banff Alberta to participate in an international conference for professionals who support people living with cancer.
My goal was to represent people with lung cancer and introduce myself to as many people as I could, kindly challenging them to do more for people affected by lung cancer.
I brought a pile of Canadian flag pins from the office of Catherine McKenna, my elected official. I’d been to her office for pins quite a few times in recent years, and her staff were always generous with pins and pleased to talk about lung cancer with me. Pins are a great excuse to build relationship, near and far. I gave out quite a few in Banff, while telling my lung cancer story to people and asking lots of questions about them and the situation where they work.
I had great conversations with a wide variety of people, including some that I had met prior to the conference. There are so many skilled and caring people working in the cancer world, but the people at this conference – social workers, physiotherapists, psychologists, and the like – asked me way more questions about my family and my cancer journey than most people typically do. I felt cared for as a person, and that was a good gift.
Many people came to hear Diane and me, when we presented about the Ottawa Lung Cancer Support Group. They listened intently as we spoke and asked thoughtful questions afterwards. I deeply hope that many of them have started up lung cancer support groups in the past year. We certainly challenged them to do so. If you want to start up a support group, it’s not hard and there are lots of people willing to help. Diane was an excellent leader who really got us started well, then left us in the very capable hands of Dr. Sophie Lebel when she retired.
For the first time ever, this conference was “Patients Included”, not only incorporating experiences, but also offering five scholarships for people affected by cancer to participate in the full conference.
These scholarships were earned by: Lorna Larsen (@TeamShan Breast Cancer Awareness for Young Women), Karen Haas (@caringcancermom Childhood Cancer advocate mom), Margaret Ng (Brain cancer survivor and wellness worker), Dr. Vicky Forster (@vickyyyf Childhood cancer survivor, cancer research scientist and science writer), and myself (@JillHW lung cancer survivor advocate). It was great to be able to connect with them all!
Vicky and I met when I was looking for a spot for lunch and noticed an empty seat beside her. It was a treat to meet someone so likeminded and engaging. Like me, she is a real people person and connector. We quickly discovered that we were both going to be in Toronto a few weeks later to serve as patient representatives with the Canadian Cancer Society.
We’re excited to share with you this paper about our experiences attending the conference. It is written by all five advocates, and Vicky Forster gave great leadership to the process, putting her connecting and communicating skills to work. Thank you, Vicky!
Research shows that partnerships lead to better research! Thank you to the International Psychosocial Oncology Society, The Canadian Association of Psychosocial Oncology, Dr. Fiona Schulte and Dr. Linda E. Carlson for strongly supporting patient/survivor advocates.
Lung cancer advocacy offers a world of opportunity! A variety of sizes and shapes so that everyone who wants to stand up for people affected by lung cancer can find ways to apply best practices to make a difference!
Let me give you a small taste by telling you about my day yesterday, and some of the terrific teams I get to work with …
International Health Advocate Chris Draft called from Atlanta yesterday morning. Great call: inspiring and energising! Team Draft invests in lung cancer advocates: supporting, training, encouraging. Chris is a strategic big picture thinker, always challenging people and organizations to leverage opportunities to do even more good for people affected by lung cancer. #Grateful
A team from The Ottawa Hospital Cancer Centre is working on a resource package that will go out (on paper and electronically) to people who are newly diagnosed with lung cancer. This project matters because it helps fill a gap in patient care. We are a diverse team, representing all key groups: administrators, nurses, psychosocial oncology, doctors, and survivors. This diversity is important to ensure that the package will be as effective as possible, and that it will actually get to people. I spent some of yesterday working on the letter from survivors that is part of the package.
What happens after lung cancer researchers apply for funding? A team of reviewers invest many hours carefully reading their research proposals, discerning strengths and weaknesses and evaluating, then gathering to discuss which they will recommend to receive funding. I spent time yesterday reading a research proposal as part of a review process.
The Patient Representatives Team of the Canadian Cancer Trials Group (CCTG) met (online) yesterday, so (among other things) I got to hear research updates from some amazing people, and present what’s happening with the lung site. Clinical trials are getting back on track after some things had slowed down due to COVID. Good news! Research matters!
The Canadian Cancer Research Alliance is supporting a project to gather recommendations for cancer research. I applied and was honoured and humbled to join the team. We were each asked to submit our five key Canadian cancer research priorities. What cancer research do you think is most important for the coming years? Yesterday the Ontario team met to discuss the priorities we had submitted, and worked together to discern the most important. Other regional teams will be meeting in days to come, and the rest of the process will unfold. What a tremendous opportunity to together influence Canadian cancer research priorities! Our voices matter.
There is a new CCTG lung cancer research idea that has been worked on and debated about for months. I’m excited about it, and have spoken up for it in CCTG Lung Executive meetings. Yesterday another CCTG patient representative and I agreed to be involved as collaborators on the grant application. Research brings hope!
There are many opportunities for lung cancer advocacy. We need more people to step up and be part of the team! I enjoy investing a lot of time and energy, but you don’t have to do the same things I do. There are a wide variety of opportunities to make a real difference! We need people with different skill sets to bring their unique abilities and commit whatever amount of time they choose. It’s up to us. Advocacy matters! #Team
Every day I give thanks for terrific teams and advocates, and that I’m well and able to do this work. Please don’t hesitate to reach out if you have questions or comments. #ResearchMatters #Hope #Gratitude
I’m alive because I take daily cancer-fighting pills. Would you give 10 minutes to help people live? Please send an email asking for funding for a lung cancer pill. I put the email I sent below for an example, so it’s very fast & easy for you to cut and paste it and make it your own. Details below!
Let me tell you about my friend Patty Watkins. In 2014, Patty was in excellent shape. Her son’s graduation was just around the corner and she was looking forward to it. One day she experienced a burning feeling in her leg, so went in to get it checked. She awoke after surgery to learn that she had lung cancer and only a couple of days to live. “You’ll never take Patty home,” the doctor told her husband. They called their children to come so they could say their goodbyes.
Patty was determined to live long enough to attend her son’s graduation. Biomarker testing revealed that Patty had ROS1, a rare kind of lung cancer which is treatable with a pill called Crizotinib.
That turned Patty’s story completely around! Patty is alive today because she takes daily cancer-fighting pills!
Patty lives every day. She is a powerhouse! Here are some of the things she has done while on Crizotinib…
Patty rode a camel, was baptised in the River Jordan, floated in the Dead Sea, went to Paris (and when her hotel was under siege during the Paris attacks, she crawled to the hotel basement on her belly!), saw her daughter marry, celebrated her & her best friend’s 60th with a White House tour, and walked many 5K’s for lung cancer research!
Patty rappelled down a 20 story building to raise money for research! Way to go, Patty!
All this because she was tested, and treated for ROS1 lung cancer with Crizotinib! Patty Watkins is alive and well today thanks to Crizotinib! She’s also now a grandmother, and loves spending time with her cute grandson!
In many places, doctors don’t test for ROS1 lung cancer, so people are dying not even knowing there are pills they can take to fight their cancer. People don’t always get the opportunity to live like Patty does.
In Canada, some hospitals test for ROS1 and some don’t. Some provinces fund Crizotinib and some don’t. We are working for change!
Right now, I’m asking for your help to get our province (Ontario) to listen and start funding Crizotinib for people who have ROS1 lung cancer. Would you please support this important work through social media, and/or sending an email. Below, for an example, is the email I sent. Feel free to adapt it to suit you. You don’t have to live in Ontario to help, but if you do live in Ontario, please mention where you live, and if you are emailing your MPP, please indicate they are your MPP and include your address.
This is a grass roots movement supported by some people with ROS1 lung cancer (including Christine Wu), other advocates (including MaryAnn Bradley and Andrea Redway), and Lung Cancer Canada. LCC and several oncologists have sent a request letter, the link is in the email below. Together our voices amplify this message, and will help people get cancer-fighting pills to help them live longer and better, like Patty.
Dear Hon. Christine Elliott, Minister of Health,
I am a lung cancer survivor who lives in Ottawa and is treated at The Ottawa Hospital. I would like to request a meeting to discuss the funding of Crizotinib for ROS 1 lung cancer patients and survivors in Ontario.
I was diagnosed with stage 4 lung cancer in 2013, and I know first hand the difference Crizotinib can make. After chemotherapy, Crizotinib offered much better quality of life along with the freedom to take it at home. Crizotinib kept me alive long enough for other treatments to become available which have kept me alive to experience milestones like my three children all becoming teenagers, and my eldest starting University.
It matters to me that all others who could benefit from Crizotinib be given the opportunity to live longer and better.
Crizotinib for ROS 1 received NOC November 2017
It received a positive PCODR recommendation June 7 2019.
The PCPA (pricing) negotiations are complete.
Provinces across the country have started to cover it including BC, SK, QB, NL, NB.
It fits in with provincial pandemic plans (including ONTARIO) to keep patients out of hospital as it is an oral take home medication.
This drug is vitally needed as a treatment for ROS1 positive lung cancer patients. Here is a link to a letter from Lung Cancer Canada written in June 2020 to Angie Wong, which outlines the case for funding. To date, there has been no response.
Please send an email to the Ontario Minister of Health, the Honourable Christine Elliott email@example.com, and also cc me firstname.lastname@example.org.
Please don’t hesitate to reach out if you have any questions, concerns or comments.
I addressed this email to the Minister of Health, and cc’d in France Gélinas, (NDP Health Critic), John Fraser (Liberal Health Critic), Karen Hughes (Deputy Minister), and Robin Martin (Parliamentary Assistant). I also sent personalised emails to several others, including my own Member of Provincial Parliament. (Email addresses: email@example.com firstname.lastname@example.org email@example.com firstname.lastname@example.org)
THANK YOU SO MUCH!!! I am very grateful that you are doing this! I love Patty and others with ROS1 lung cancer, and I very much want all to live longer and better with Crizotinib. Your participation means a great deal.
A pill can turn a life around. Thank you for acting to turn people’s lives around.
World Lung Cancer Day is August 1, and this year the focus was on team building for a group of over 30 lung cancer advocates from across North America! Team Draft gathered advocates online to welcome author and inspirational keynote speaker Marques Ogden as he – for the first time – shared his own personal story of losing his grandmother, the matriarch of his family, to lung cancer.
Not everybody is ready to be an advocate after they lose someone they love. We recognise that this can be a very hard thing to do. It takes courage to share one’s story, so it is important that we welcome people and provide a supportive environment that allows them to share their story. We are very grateful to Marques for opening up and telling us his story.
Marques Ogden’s life story is compelling, and he tells it well. After his six season career as an NFL offensive linesman, he navigated the challenging transition to life after football. He started a construction company and grew it to one of the largest in Baltimore Maryland. Marques shared openly about mistakes he made, and the bad company culture he allowed to grow. He went from being a multimillionaire to going bankrupt in a matter of months, then did some significant self reflection before charting a new course and pursuing it with steadfast determination. He is now a key note speaker, executive coach, business leader and author.
Marques has wisdom to share about life, business and teamwork. He shared some important words for lung cancer advocates, and we were taking notes! Lung cancer needs more advocates who work together as a team.
Marques’ words sparked thought and conversations about team building values, culture, communication and perseverance. He challenged us to be intentional every day, and to work together as a unit to reach our goals. Chris Draft also spoke about the importance of team, and how team building needs work, time, relationships, and valuing skills and strengths.
Thank you, Marques, for sharing wisdom, and also your personal lung cancer story. Thank you, Team Draft, for setting up this World Lung Cancer Day celebration and team-building opportunity. Thank you also for this great book which I’m enjoying reading.
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.