Happy One Year Anniversary to The White Ribbon Project … What is your Cancer Center doing for Lung Cancer Awareness Month?

I first met Heidi in a Zoom call organized by Team Draft the summer of 2020. Right away it was easy to see that she is a loving person who genuinely cares about people. A few months later she told us (in a zoom call organized by Team Draft) that she was fed up with her cancer center’s reluctance to promote lung cancer awareness, that she had asked her husband Pierre to make a big white ribbon for their door, and then they started making them for friends and strangers. She generously sent them out to everyone on that call, even me in Canada. I was the only Canadian on that call and, knowing that international shipping can be expensive I didn’t want to ask. Heidi’s love and generosity made my concerns seem ridiculous. She wanted to give ribbons to everyone willing to stand up for lung cancer, to make people feel cared for. Heidi is rare and meeting her was very special.

Those first few ribbons have multiplied into a movement! Hundreds of lung cancer advocates are rising up with their ribbon, taking photo’s and posting on social media, raising lung cancer awareness across the US and Canada, and the Netherlands, the Philippines, Ireland and expanding across Europe in partnership with Lung Cancer Europe, as well as other growing international partnerships. Together we are driving change.

Heidi and Pierre have made 832 ribbons, and also assisted at other builds as they traveled around the US on The White Ribbon Project Tour. Heidi and Pierre have paid for all the ribbons they have made and sent, and all their expenses on the six-week tour. As they travelled around, rather than taking donations, Heidi and Pierre encouraged people to invest in their local community, to form a team, host a build or contribute to one, participate in making ribbons with love and giving them with love. Teams have been forming in many communities, and this is where the action happens!

We are very grateful for teams in Canada like Lisa and Bill Weir who have made 244 ribbons, Alvin and Carolanne Johns who have made 45, the Monds’ team who made 20, and others who are in process of team building.

The Ottawa team held a community build in solidarity with The White Ribbon Project Tour. People contributed their time, talents, supplies, food, drink, even hand sanitizer. In keeping with the inclusivity of The WRP, patients, caregivers, survivors, family, friends, doctors, nurses, administrators, politicians and others were invited. There was much love and laughter at our outdoor venue that hot August afternoon. What a gift to be together, building relationships as well as ribbons, loving and serving our community.

The Ottawa team knows that advocacy is relational work which doesn’t just happen during Lung Cancer Awareness Month in November. We are committed to making people aware and making people feel loved year round. That’s why we set up outreach tables in our cancer centre to welcome people, show them love and give them information. We started annual summits to gather the community and offer learning opportunities. We also gathered a team to put together a welcome package which includes a letter from lung cancer survivors with contact information. This is given out year round, to everyone newly diagnosed. The Ottawa team made a choice to be involved in making people aware, and making sure people know they are loved.

What is your cancer centre doing for Lung Cancer Awareness Month this November? What is the plan for lung cancer every day?

The White Ribbon Project is committed to making sure people affected by lung cancer know they are not alone. Together we are committed to changing the public perception of lung cancer. Together we are driving change. It takes a team of people who decide to take action to get the job done. Let’s work together! 

#TheWhiteRibbonProject #love #hope #inclusive #unbranded #international

www.TheWhiteRibbonProject.org

Happy World Cancer Research Day!

Biomarker Testing + Research + Access = Life

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.

#BiomarkerTestingMatters #ResearchMatters #AccessMatters

#Hope #ResearchWorks #WorldCancerResearchDay #PeopleMatter

(Note: photo above is Dr. Vicky Forster, Toronto; photo’s are all pre-COVID.)

Scan results

Scanxiety is real… the anxiety many of us can feel around scan time. Most who’ve been diagnosed with lung cancer are on treatment, whether it’s a targeted therapy in pill form, chemotherapy, immunotherapy, or a new kind of therapy devised by researchers to keep us living longer and better. Whether alone or in combination, most are on treatment and get regularly scheduled scans to see if the treatment is working.

Sometimes some get cues that the cancer may be growing or shrinking, side effects that may be indicators, that might give an idea of what is happening inside our body. Often it’s a mystery. Lung cancer can be sneaky.

My 13th round of chemo was on Thursday August 12. I also continue to take a daily targeted therapy, Lorlatinib. This combination has growing popularity with some of the top lung cancer doctors in the US. I’m thankful to be able to have access to both treatments here. Lorlatinib is very effective at keeping the cancer from spreading to the brain. My CT scan was Monday morning (the 23rd), and results just came in: all is stable or slightly better! Such great news when someone gets good scans!

In the past few months, Several dear friends have gone through progression and questions about what kind of treatment path to take forward. Some have faced serious health challenges. These can be scary times. So grateful every time there is good news. We keep holding onto hope for more research to bring more treatment options which will help further extend life. Often there is uncertainty, and it can look like the research may not be keeping up with the need. And then there’s the issue of access: what about people who cannot use a treatment because they can’t get it? Maybe it’s too expensive or not available where they live or when they need it?

Lorlatinib is a drug that has helped keep me alive and living very well for years. I’m very grateful for it and have been working with others for some time to get better access to Lorlatinib for more Canadians. I’m thankful for the compassionate release program from Pfizer which has meant that every month a package of life-extending medicine, probably worth over $10,000/month, is delivered to the door at no charge. This morning, a cheery FedEx employee handed over the small box with a lovely greeting. He had no idea how thankful I am for that delivery.

Very grateful to continue to receive free Lorlatinib and that scans are good. Very thankful for researchers, clinical trials opening space, terrific care teams, dedicated advocates, and hope. It’s so important to hold onto hope.

(Apologies for the older photo’s. My phone is not currently working.)

Our ALK+ Family Summit July 31 – August 1

I spent the week-end enjoying our ALK+ Family Summit, and learning about the latest in research for our particular kind of rare lung cancer. Don’t let the term “rare” fool you: we had over 700 people register for our summit. I enjoyed the hospitality of Jo-Ann and Craig Smith for the first day: together we watched the Summit in their awesome space and enjoyed great conversation while they served terrific food and drinks.

I opted to participate in the Summit from home on Sunday since I was leading a “Breakout Room”, which meant that I talked about The White Ribbon Project five times in a row, to five different groups of people who came into the breakout room for 20 minutes each session. It was a great was to spend a chunk of the day, interacting with people I knew, meeting people for the first time, and talking about one of my favourite subjects: lung cancer advocacy!

The White Ribbon Project is an inclusive, unbranded, international grassroots movement, changing public perceptions of lung cancer. As I said in my presentations, we are looking for regional ambassadors – champions – who will host Ribbon Builds and distribute Ribbons. If you are interested in learning more about The White Ribbon Project, please check out our new recently launched website. You can also connect with us through email or social media.

I filled the slide deck with pictures of some amazing people who are part of The White Ribbon Project, many of whom are part of our ALK community, some of whom participated in the breakout room today. In case you’re interested, I’ve put copies of most of th slides below. Heidi and Pierre could not be part of the presentation today, but generously pre-recorded a five-minute video which was part of the slide deck, but not included here.

A big thank you to everyone who is in the photo’s and/or took photo’s! Special shout-out to Heidi & Pierre, Chris, Anne, Michelle, Bonnie, Rhonda and Dave – The White Ribbon Project #team.

www.thewhiteribbonproject.org

Quick update

A quick update to let you know I’m doing well, and I hope you are too. I’m enjoying this beautiful summer, spending some time with friends, doing lots of jobs around the house, and loads of lung cancer advocacy.

Very thankful that the chemo is working. Twelve rounds since November 2020, and I’m feeling well, better every round. So very thankful, and holding onto hope.

If you’re facing chemotherapy and feeling nervous, be assured that chemo today is not like it used to be, not like the movies have portrayed it. Many people never lose their hair, and there are great new drugs to deal with nausea. It’s much more effective now, and much less toxic. Cheers to researchers! #ResearchMatters

Cheers to everyone who has ever gone through chemo, or supported someone going through chemo. #SupportMatters Being on chemo can be a mental / emotional battle as well as a physical one. It makes a real difference to receive kindness and care. We all need support and encouragement.

A big shoutout to my great care team, including the nurse who found a vein on the first poke today. That’s always good! My oncologist is kind, humble, wise, hard-working, and a great oncologist. So much to be thankful for.

Shout outs go to researchers and all who work to make the world a better place for people who are affected by cancer, whether it’s awareness, early detection, biomarker testing, treatment, research, survivorship…

Sending love out to all who care about and support me. It means so much. Thank you.

#TheWhiteRibbonProject now has our website up: TheWhiteRibbonProject.org

#thankscoach

#12rounds

#grateful

Kindness

Last June I asked a really lovely medical oncologist/researcher friend, Dr. Narjust Duma, if she knew the YouTuber @chubbyemu. I was thinking that my son would really like it if @chubbyemu reached out to him. COVID was turning everyone’s world upside down, and I knew my son was a big fan, so I hoped it might help make his world a little better. Turns out she didn’t know him, but chose to reach out on our behalf anyway, and @chubbyemu said he would be happy to connect with my son. I got all teary when I read her message, and I’m feeling the emotions again as I reflect on it now. So very grateful!

@chubbyemu emailed my son, and my son was thrilled. I was very excited too, and messaged @chubbyemu to thank him. I also mentioned that if he ever needed a lung cancer advocate, he could reach out.

In September, @chubbyemu messaged to ask if I would be willing to share my lung cancer story. A conversation ensued, culminating in this video shoot and release in March. Here is the link for the video on his @HemeReview YouTube channel: Interview with a Stage 4 Lung Cancer Survivor (Jill Hamer-Wilson) .

What an exciting experience that was, especially since we were filming it separately in different countries, and Dr. Bernard was masterminding the production and helping me navigate various technical challenges at a distance!

Naturally, The White Ribbon Project was part of the 25 minute interview, and we were honoured to send Dr. Bernard (aka @chubbyemu) a White Ribbon, with sincere thanks for his support of people affected by lung cancer and The White Ribbon Project.

It’s so important that people affected by lung cancer know that they are not alone, they are loved, they are welcomed, they belong, you are loved, you are not alone. If you or someone you know would like a White Ribbon, please reach out. The White Ribbon Project is about #love and #hope.

It also matters that we recognize The White Ribbon Project is inclusive, including lung cancer doctors, nurses, researchers, fundraisers, administrators, physiotherapists, social workers, technicians, cancer centre CEO’s, media, newly diagnosed, care givers, people who have lost a loved one, survivors, former smokers, current smokers, never smokers, early stage, late stage, surgeons, radiation oncologists, medical oncologists, pharmacists, cancer centre staff, managers, social workers, respirologists, primary care physicians, health educators, friends, family members, speech-language pathologists, YouTubers, bloggers, and so many more! #inclusive

Thank you, Heidi and Pierre, for making the first Ribbon with love, making this particular Ribbon with love, and sending it with love to Dr. Bernard.

Thank you, Dr. Bernard for supporting The White Ribbon Project, this lung cancer survivor advocate, and so many other people affected by lung cancer. Thank you for raising lung cancer awareness. Thank you for your compassion, generosity, and kindness. Thanks also for the great photo’s! #thewhiteribbonproject

Thank you, Dr. Narjust Duma for choosing to reach out to a stranger to do a great kindness for the son of a lung cancer advocate. Thank you for being a fierce thoracic oncologist, Asst. Prof, researcher and advocate! Thank you for supporting people affected by lung cancer and The White Ribbon Project. We are grateful!

#gratitude #kindness

Strengths, Stories and Opportunities

Team Draft works hard every day to encourage, uplift and strengthen lung cancer advocates. I have been the beneficiary of that encouragement and advocacy training in various ways since I first heard of Team Draft through this video What’s the Biggest Cancer Killer? made by Team Draft with our friend Keith Singer and the Catch it in Time team. I met Chris in person in 2018.

Team Draft has traveled worldwide to connect with the lung cancer community in cancer centres – over 60 in the first year – as well as meeting people in restaurants, at games, and in people’s homes. It matters to Team Draft to really get to know people and help them develop their strengths. Seeing people in their contexts is the best way to more fully understand their story and better support them. Team Draft works strategically, developing leaders and encouraging everybody.

With COVID Team Draft has quickly pivoted to making the most of opportunities. Thanks to online platforms such as Zoom, they meet regularly with a wide variety of people in many places, right from the comfort of home.

Team Draft values the importance of following best practices, such as researching our audience and tailoring our messages to our listener. Team Draft embraces the power of story and audience-appropriate messaging for advocates: “We have to know our audience and we need to know our ask.”

Through Zoom, Chris has introduced some lung cancer advocates to his friend Dr. Dennis Rebelo, a professor, coach and consultant who has developed an effective method for helping people tell their stories better. It’s called StoryPathing, and as we’ve started down this path it’s helped us more deeply explore the power in our stories. This process has great potential for helping advocates tell our stories better.

Advocacy is about relationships and storytelling. More effective storytelling means more effective advocacy and in this case, that can mean better outcomes for people affected by lung cancer.

I’m pumped about the possibilities!

Thank you, Chris Draft, Team Draft, and Dr. Dennis Rebelo!

My Roller Coaster Adventure Ride

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.

#hope

Bump in the Road

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.

Lung cancer research brings real hope!

More good news from lung cancer researchers!

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.

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.

* You can read more here.

#ResearchMatters #AccessMatters #BiomarkerTestingMatters #HopeMatters