Hoping and Cheering for Much More Research

Chemo number 19 down this afternoon! I’ve been getting chemo every three weeks since November 2020 and we are so very thankful I’m still going strong. Nineteen rounds, over a year … this is worth celebrating!

Some people are afraid of chemo and / or very reluctant to take it. Chemo is way easier than it used to be. Everyone is unique and chemo affects everyone uniquely so why not give it a try? I’m finding it’s doable, even after a year, even after eight years of cancer treatments. Every three weeks there are several days when I’m very tired, and there are a few other side effects. This is hard but not too hard with plans in place and a good support team. I started chemo with the hope that there would be a new treatment, a clinical trial ready for me maybe even as soon as last summer. I keep hanging on, hoping for research to come through for me and others like me. More research means more survivors and better survivorship.

So many of us are making the most of the gift of time we are being given, doing our best to live well with lung cancer and/or other kinds of cancer, reach more milestones, make more memories. I work hard at advocacy and supporting people diagnosed with lung cancer and other kinds of cancers because I know it really matters and it makes a difference.

Chemo can bring a mental and / or emotional battle as well as a physical battle. I remember well the very first time I had chemo, back in December 2013, five days after I was diagnosed with stage four lung cancer. I had worked so hard to take good care of my body by living an active life, eating healthy, and using only natural, toxin-free products, and here I was at the cancer centre to have a hole poked in my arm to inject toxic chemotherapy. I cried. I still find this process challenging, but I know it’s worth it because although it brings some harm to my body, it’s kicking cancer to the curb. Every scan this year has been good news that the cancer is stable or slightly smaller. So thankful! Definitely worth it!

After eight years of constant treatments (mostly targeted therapies which are generally much easier on people than chemotherapy is) like so many others I’ve suffered a long list of treatment-related side effects, many of which have lasted through these eight years. Like many other people I have experienced nerve damage, especially to the hands and feet, hearing loss, vision changes, skin problems, digestive issues, changes to nails and hair, and many other things. Survivorship is good and it can bring challenges.

I’m very thankful for over a year of chemotherapy which has helped bring my total up to eight years of stage four cancer survivorship. With so many others affected by lung cancer and other cancers, we hold onto hope for a clinical trial or other form of new treatment that will work for us and keep us going strong for years. I know beyond a shadow of doubt that things can change in the blink of an eye! Having lived in Ottawa Canada most of my life, I’ve seen Winter melt into Spring each year and this helps reinvigorate hope and faith! Yesterday I drove into the Cancer Centre for blood work through such ice and snow that had to use my memory and imagination to figure out where the street lanes were. Today it was mostly melted, the sun was shining and the temperature was a balmy 14 degrees Celcius (57 degrees Fahrenheit) with a beautiful breeze! Such a gorgeous and rare weather experience for December in Ottawa Canada!

I got back home in time to see a lovely friend from church who brought a five-day feast (from her and two other dear souls) for the kids and me, then a few calls and messages from caring, supportive friends. Grateful for many kind friends who make being on chemotherapy so much more doable. It takes a team. We all need support. So much to be thankful for!

Nineteen rounds down and hoping for much more research and many more treatment options for people facing cancer!

Grateful

Today, December 12, marks eight years of survivorship.

Before I was diagnosed eight years ago today, I had no idea I could get lung cancer. My friends and I had no idea that anyone could get lung cancer and it was a complete shock.

When I was diagnosed eight years ago, I had no idea I would still be alive eight years later. I feared that the coming Christmas, Christmas of 2013, would be my last. Here I am in 2021 with some measure of incredulity, amazed that I’m still here eight years later.

You’ve heard me say many times before that I’m here because of biomarker testing, I’m here because of research, I’m here because of a clinical trial, I’m here because of great medical care, I’m here because of the support of my friends, I’m here because of the grace and mercy of God.

To everyone who has been walking with someone with a difficult diagnosis, thank you. We know it can be challenging and we are grateful. Caring can be scary, sad and very uncertain. It takes courage, strength and character.

Personally, I’m especially thankful for the gifts of: hours on the phone / zoom, homemade jams, cards, a very special birthday party, chocolates and other treats, flowers, drives, help with jobs, meals, a special pen.

Eight years of survivorship is really something to be celebrated! Today I raise my glass to celebrate you who have helped me walk this challenging path. Thank you!

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

Seven years – Wow!

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!

thank you

Partnerships beyond Banff

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.

Thank you all for being #team.

You can read the whole article here.

#IPOS19 #CAPO19.

A day in the life of an advocate

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

Chris Draft (far right) with some of the terrific lung cancer advocates from Australia, the Netherlands, Mexico and Canada at World Conference on Lung Cancer, Barcelona, 2019.

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.

My awesome oncologist, Dr. Garth Nicholas, who is part of this team (photo taken before COVID-19)

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!

My day was filled with conversations, emails, messages and more, but before it ended I also decided to participate in research. I filled out the first survey for the Canadian Cancer Trials Group study: CCTG SC27 – The Impact of the COVID-19 on Canadians Living with Cancer. If you would like to learn more about participating in this study, please click here!

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

photo credit: Chris Draft

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

Three More Reasons to Hold onto Hope

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 Research Cancer 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.

Everything changed.

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 brings hope.

Hold onto hope.