Disappointing News

One advantage of needing help getting into the cancer centre is being allowed to bring a friend into my appointment with the oncologist. I’m very grateful that I could bring dear friend and awesome lung cancer survivor advocate, Andrea Redway, into the little room to talk with the oncologist about test results. It means a lot to have her ears and wisdom, and know that she will feel free to speak up with questions and ideas. (Of course I ran it by the oncologist beforehand.)

Part of the disappointing news is that there is no news from the blood biopsy that was sent to Canexia lab in Vancouver BC. Just because they didn’t spot any cancer info doesn’t mean there is none present, similar to the way we don’t find a chunk of chicken in every spoonful of a bowl of chicken soup.

My awesome oncologist looked back over several ct scans, comparing multiple scans rather than merely the most recent to the one previous scan. When he put five scans in a row, it became clear that it looks like slowly progressing cancer growing. Disappointing news.

We control what we can control.

There are several potential options to consider choosing. I would love to participate in a clinical trial, but unfortunately the cancer is growing in a way (without “measurable disease”) that does not meet criteria for the trials that we’ve looked into so far. Currently I don’t qualify for any trials that we’ve found. I’m very grateful for the team who have influenced our thinking, including patients, survivors, caregivers, doctors and researchers, very thankful for those who have offered input to guide our choices. My oncologist and I have been communicating with each other, and including the thoughts of other experts.

A big shoutout to Colin Barton and the ALK+ Research Acceleration Committee who are made up of patients, survivors and caregivers. They not only stay on top of cutting edge research related to the type of lung cancer we’re affected by (ALK+), but also drive research. They are a brilliant bunch who also care.

Another big shoutout to our Canadian team of doctors and researchers. Through years of advocacy it has been a privilege to get to know and partner with many top lung cancer researchers, surgeons and oncologists from across the country, as well as around the world.

My oncologist reached out to several people including Dr. Alice Shaw, MD, PhD, also known as the Queen of ALK. Dr. Alice Shaw remembers me as the Canadian advocate who chased her from the escalator and interviewed her for this YouTube video at the American Association for Cancer Research Annual Meeting in Atlanta, 2019. #AACR19

Dr. Ross Camidge spoke to the importance of testing to find the most appropriate treatment. Here he is at an event in April 2019 at The Ottawa Hospital where Dr. Paul Wheatley-Price obtained permission for me to invite people to be part of a special presentation to patients. Dr. Camidge also fielded questions from people across the country who were able to participate remotely. Dr. Christine Lovly is another top ALK doctor/researcher who genuinely cares about people and remembers us. They are part of our lung cancer team, and they are terrific teammates! So very thankful! (I also included a few photo’s below from our ALK+ family summit in Atlanta in August 2019. Such a great gift to be with these amazing people.)

But back to the news… my oncologist has asked a thoracic surgeon at The Ottawa Hospital about doing a procedure to get a biopsy to test. I’m waiting to hear back. Waiting is hard, but we can only control what we can control.

In the meantime, we continue the same course of treatment which is holding back much of the cancer, and we also take symptom management steps ahead. This seems to be a slowly progressing cancer, and being slow is a mercy which we’ll take.

The pain and symptom management clinic at The Ottawa Hospital gave an appointment next week. Research shows that people whose symptoms are well-managed tend to live not only better, but also longer. I’ll take it!

Yesterday morning I presented a White Ribbon to my awesome respirologist, Alyson, who came by to replace the oxygen machine which had started beeping. She has listened to a lot of advocacy talk about lung cancer, is very informed and empathetic. She goes above and beyond. Very thankful for her.

#hope

This just in! A call from the doctor’s office for a phone call appointment to discuss the potential procedure on Friday afternoon, April 29. (I asked and they don’t have a cancellation list.)

Testing and Treating Lung Cancer

When I was diagnosed with lung cancer back in 2013, The Ottawa Hospital Cancer Centre tested for two specific kinds of (non-small cell) lung cancer: EGFR and ALK. How thankful we are that they routinely tested for ALK because knowing my specific diagnosis has made a huge difference in terms of my treatment. Because we knew specifically what kind of lung cancer, we could choose the best treatments which have kept me going for over eight years! How thankful we are for testing and treatments.

During those eight years, advances in lung cancer research have been outstanding! Now we can treat so many more kinds of lung cancers. It can be challenging for hospitals to keep up with testing, to keep testing for all the treatable types of lung cancer. I’m happy to report that now The Ottawa Hospital Cancer Centre tests for eleven specific types of lung cancer: PD-L1, EGFR, ALK, ROS1, RET, KRAS, BRAF, HER2, MET, NTRK, and PIK3CA.

Clinical trials can be the best way for some people affected by lung cancer to get the newest treatments, so testing must be aligned with treatments available by clinical trials or compassionate release programs.

Lung cancer research will continue to offer increasing treatment options for people affected by lung cancer. As more advances in the testing and treating of cancer arise, it matters that hospitals ensure that testing aligns with available treatment options.

How many types of lung cancer does your cancer centre test for?

(Note: this testing can also called by other names, for example: biomarker testing, molecular testing, precision oncology, tumour testing, genomic testing, … )

#ResearchMatters

#ChooseHope

Getting our affairs in order

I’ve heard people talk so comfortably about end of life matters, but it was never easy for me. With practice it’s been getting better.

My parents were both diagnosed with cancer within one week when I was 20, and within a year they had both died. Those were the first and second funerals I went to. Before that time I did not know much about grief except what I had read in books. That was an incredibly difficult season and grief continues, though not like back then. I’m working to prepare my children for life after my death, even though we are holding onto hope that I will live for many more years. We have had some really good and important conversations.

It’s always wise to make sure our will is updated and the other important things are communicated and ordered appropriately, but at times like this we feel the need to be sure all the more. It’s generally best to involve a lawyer. Specifics vary from place to place, but in Ontario Canada, the main pieces are: will, power of attorney for personal care, power of attorney for property.

There are many resources in communities and online to help.

For some time I’ve been connected with Hospice Care Ottawa, and recently have started taking advantage of some of their services. I’ve been meeting with a grief counsellor regularly since September because I was feeling the weight of many griefs, and this has been very helpful. Lung cancer advocacy can be a heavy load. Those who are uplifting and supportive matter so much. They can make a huge difference.

Some of Hospice Care Ottawa’s volunteers participated in an advanced care zoom meeting, which was filled with good information and resources. They invited us to play a “Go Wish Game”, where you choose your top 3 out of 36 wish statements relating to end of life care. It’s challenging to choose only three, but the point of this game is to get people thinking and talking, and that it certainly did. Many others on the call have also found that having these kinds of conversations with family and friends tended to turn out a lot better than they were expecting. There are lots of good resources and great conversations to be had.

My word for 2022 is “rejoice”, chosen before 2022, before my health took a turn. It’s surprising how much joy there can be, even in conversations about end of life issues. It matters to me that people feel freedom to celebrate, not just mourn. We’ve spoken about grief many times. We acknowledge there is and there will be sadness along with a whole lot of different emotions, but there can also be joy and laughter. My desire is that in addition to sadness people will remember and celebrate the good and happy times.

My beloved three children mean so much to me. They have been living with their Mom having lung cancer for over eight years. They were only 6, 10 and 12 at diagnosis. Now they are 15, 18 and 20. We are very thankful for advances in research that have been a big part of the story, keeping this stage four cancer survivor alive all these years. What a difference research and good medical care has made, along with the support of some amazing people!

Our advocacy has been largely about working to extend and improve the lives of people diagnosed with lung cancer or other kinds of cancer. We’ve worked hard to support people and elevate the value of people affected by lung cancer and the importance of research. It is still possible that I can live on chemotherapy long enough for another discovery to be made and become accessible for me. This is what we’ve been hoping for.

This is how we’ve been living for the past eight years since diagnosis. Seven different lines of treatment: four different targeted therapies, radiation, two sets of chemotherapy … when one treatment option failed another one has always become available, sometimes just in the nick of time. Great timing of accessibility has helped keep me and many others alive. This rollercoaster ride has kept me and so many others going, and we continue to hold onto hope.

We celebrate researchers, fundraisers, primary care physicians, counsellors, storytellers, social workers, advocates, nurses, surgeons, administrators, oncologists and anyone who works as a good team member to help extend and improve the lives of people affected by lung cancer. These good teammates need to be uplifted and encouraged because the load can be heavy, the work can be hard. We are so grateful for those who encourage and uplift teammates. Together we can be a good team. We can drive change.

#AdvocacyMatters

#AccessMatters

#ResearchMatters

#ChooseHope

Inside scoop

This is awesome! The Ottawa Senators care so much about people affected by lung cancer that they set aside time to sign a stack of The White Ribbon Project ribbons to give to people newly diagnosed with lung cancer at The Ottawa Hospital Cancer Centre. The Weir family is a major reason that The Ottawa Senators are part of The White Ribbon Project community.

Bill & Lisa Weir have made 400 The White Ribbon Project ribbons and given 370 of them out. They are very generous people who are giving with love, investing their time, talents and resources into people affected by lung cancer. They care. Their family is tremendously supportive. They have three grown children, twin grandsons and one due in July. Lisa is looking forward to turning 60 this year. Big milestones. In May 2020, Lisa was diagnosed with advanced lung cancer. Stage four. Both lungs. She started a clinical trial for her specific kind of lung cancer (KRAS G12C) in May 2021, and it’s working well. #ResearchMatters When she and Bill learned about The White Ribbon Project, they wanted to be part of it and reached out in the very early days to ask about making ribbons. By the end of February 2021 they had made 244 ribbons. Their daughter and son-in-law, Sam and Josh (who plays for the Senators), eagerly jumped on board as did many other family members, friends, teammates and more. What a difference their family and community is making for others. “In this family no one fights alone.” It’s so good to know the Weir family. They are kind people, good, generous and eager advocates, silver linings of lung cancer. Thank you, Weir family and extended community.

Dr. Paul Wheatley-Price is another important The White Ribbon Project community member. He is a medical oncologist who has stepped into an even bigger leadership role at The Ottawa Hospital Cancer Centre, giving out ribbons with love. He knows the story of The White Ribbon Project and the importance of love in the making and giving of ribbons. He understands the power of the Ribbon to gather, unite and uplift the lung cancer community in love. He came over to our home today to pick this new batch up. (Thank you to first born for taking pictures.) He was at the Ottawa Community Ribbon Build back in August 2021, and gave out a stack of ribbons to the newly diagnosed in the Fall and Winter. He has been showing he cares about people affected by lung cancer for years. He has played a key role in advocacy, and is a terrific partner in advocacy. He helped us get the first lung cancer outreach table on World Lung Cancer Day, August 1, 2018 at the Cancer Centre (and has continued to support them), and he helped Andrea and me with the annual patient-driven lung cancer patient summits that we held prior to COVID. Having someone like Paul be part of the team makes a phenomenal difference. Multi-disciplinary advocacy teams are powerful game-changers. Paul is a real door-opener. We are so glad he has taken on this important role with The White Ribbon Project, giving out ribbons with love in Ottawa.

Below are some pictures showing just a small portion of Paul’s tremendous advocacy (over years) for people affected by lung cancer. He is a powerful force.

Paul was part of Ottawa’s community ribbon build in August 2021.

Here is Paul today, picking up ribbons at our home. Thank you, Paul, for consistently going the extra mile.

Home, Emergency again, then Home again

I’m very glad to be home! Got home late Tuesday afternoon (Feb. 15) from hospital, then was admitted back to Emergency on Thursday afternoon (Feb. 17) after chemo but was allowed to come home again later on Thursday (yesterday, Feb. 17).

Tuesday was a flurry of activity to get everything ready for me to go home from hospital. I’m very grateful for all the people who worked hard to make that happen.

We did a blood transfusion and organized home oxygen which is definitely necessary. My blood oxygen drops very quickly without it, but the good news is that is comes back up very quickly with oxygen. My blood oxygen was very low Friday night when I went to emergency, at a level where a person can faint. They quickly got me up into the normal range. My friend Shonna loaned her pulse oximeter to stick on my finger to check at home. It has been showing good numbers for both the blood oxygen levels and pulse rate with the oxygen.

While I was in hospital they ran lots of tests and ruled out many bad things which is such a relief, but they weren’t able to determine the cause of the low blood oxygen. One of the tests they did was a bronchoscopy, and it will likely take a couple of weeks to get all the results back from that. They took samples and are growing cultures to see if there is a treatable infection that we’re dealing with.

I am so very happy to be with my kids. I had left the house on Friday evening (Feb. 11) for a CT scan, then ended up being away four days. I went suddenly to Emergency straight from the CT scan, then was admitted to hospital a couple of days later. I got home late Tuesday afternoon (Feb. 15) – thank you Mieke for the ride, and everyone else who offered – so very happy to be home with my kids. It was good to talk with them and listen to them and just be with them. They spoiled me with cookies and cake and we enjoyed celebrating together.

Thursday (Feb. 17) meant back to the hospital for chemo as usual, every three weeks (cycle #22). This time another lung cancer survivor advocate, Taylor Westerman, was also there. We’d met online and have been trying to connect in person. (He heard about The White Ribbon Project, and I really want to give him a white ribbon, but we haven’t been able to make that happen yet.) I heard a nurse say “Taylor” and it seemed that the guy across the chemo unit looked like the Taylor I’d been connecting with through Messenger, so I called out to him and sure enough, it was Taylor Westerman! It was so nice to see him in person, and when I was leaving I popped over to say a quick hello and take this picture (below), though we didn’t chat for long because I wasn’t feeling well. Notice Taylor’s great tee shirt, and I’ve got a LUNGevity HOPE pin on my lapel. Lung cancer awareness happens 24-7, 12 months a year!

After chatting with Taylor, I paused to say a very quick hello to the awesome clinical trials nurses who took such good care of me when I was on a life-extending clinical trial for the investigational drug “Ceritinib” from 2015-2017. (The trial was testing to see how effective it is when taken with or without food.) I am so thankful for that trial which not only kept me alive until 2017, but long enough for more new drugs to be approved and accessible here in Canada, drugs that are keeping me alive today.

I planned to head home after briefly chatting with the clinical trials nurses but they noticed I was looking puffier than usual. They asked a few questions and before you know it they got together a bag of snacks (big thank you!) and a wheelchair for me to be wheeled to emergency, treated with IV drugs and observed for a few hours. The good folks in emergency wanted me to stay overnight, but agreed to let me go home. Mieke kindly came to pick me up and take me home again. The traffic was terrible, the weather was awful, but Mieke drove very carefully and got us both home safely. Thank you, Mieke. Thank you also to other friends who offered to drive.

So I’m home again, again, and very grateful. Also extremely tired, thanks to the double whammy of chemo and Benadryl. I can barely keep these eyes open so hope this post makes sense. Special appreciation to the oxygen people. Also to my awesome oncologist who happened to be on call the week I was in hospital. He’s only on call about three times a year, so this was a huge gift for me. I also am grateful for a neighbourhood connection with the very nice family doc who was working on the floor. When she mentioned that she teaches family docs and med students I went completely into advocate mode and steered the conversation. She told me she had been in contact with another lung cancer advocate in Ottawa. Andrea Redway had already reached out to her. Way to go Andrea! Andrea is awesome! I made sure the doctor knew it, and encouraged her to reach out to either of us anytime. Then after the doctor left I messaged Andrea to tell her that I had also met the doctor. It’s so good to be part of a team. Very grateful for Andrea and others like her who share the load. The more we work together as a good team, the better we’ll all be. #team

Very grateful for people from Parkdale United Church who are bringing us dinners: yesterday, today and tomorrow. Three meals every chemo cycle makes our lives so much easier. Thank you! #team

Also a big shout out to Hospice Care Ottawa for delivering a lovely care package (photo below) on Thursday (yesterday) with a homemade valentine’s day card from a local school and some snacks. Very thoughtful!

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!

RIP Kim MacIntosh, Lung Cancer Survivor Advocate

Before I met Kim MacIntosh I knew I would like her, because of the way my friends were speaking of her.

I couldn’t go to the World Conference on Lung Cancer in Toronto in 2018 because I had suffered progression. Andrea and Peggy promised to tell me all about it when they came back, and they did!

There were so many exciting stories: people they’d met, promising new research, fun times, but of all the details in all the stories, Kim was the person who stood out by far! I couldn’t wait to meet this lung cancer survivor advocate that I’d heard so much about.

Kim started driving in to our Ottawa lung cancer support groups – more than an hour each way, and she fit right in with the group. It was so good to get to know this lung cancer sister.

Kim cared about people. She deeply loved her family: husband Dean and daughters Ceilidh and Sadie, her parents, siblings and extended family; and friends, especially her besties. She spoke often of them and participated in all kinds of traditions with them that filled her calendar with meaning, joy and laughter. She knew half of Cornwall, and a good deal of other people as well.

Before Kim was diagnosed with lung cancer she worked as a nurse and had a fierce passion for advocacy. Kim brought her medical and scientific knowledge, her understanding of how the system works, and her prior passion for people and advocacy to her lung cancer advocacy. She could often be overheard encouraging people to apply for their disability parking pass or tax credit, reminding them that they were entitled to it and telling them step by step how to go about applying. Kim cared about people.

Andrea and I compiled this list of highlights of Kim’s lung cancer advocacy:

– early member Ottawa Lung Cancer Support Group (October 2018)

– IASLC World Conference on Lung Cancer, Toronto 2018

– staffed outreach tables at The Ottawa Hospital Cancer Centre

– shared her cancer story at the Ottawa Lung Cancer Patient Summit, November 2019

– went to LUNGevity conference in Washington DC, 2019

– member of the EGFR Resisters

– started the EGFR Canada fb group

– early leader in the Canadian Lung Cancer Advocacy — Breathe Hope fb group

– very strong presence on Twitter and on fb. Shared lots of research etc.

– co-designed the Lung Cancer Strong tee shirts and organized the ordering, printing and distribution

– completed IASLC’s STARs Program in 2019 and attended WCLC 2019 in Barcelona

– participated in June 2019 CCSN/LCC Breakfast and meetings with MPPs on Parliament Hill

 – made a video on her experience as a LC patient for CCSN’s Right to Survive campaign

– did a podcast for LCC with Dr. Paul Wheatley-Price

– member of Programs Committee, Lung Cancer Canada

– participated in The White Ribbon Project for lung cancer awareness and travelled in both Ontario & Quebec distributing white ribbons to lung cancer patients, advocates & medical staff

Kim was a good friend to many, a devoted wife and mom, and a fierce advocate for lung cancer and other important causes. She was deeply loved and she is missed. RIP, Kim, and thank you.

Kimberley Ann (Moran) MacIntosh September 30, 1967 – November 17, 2021

Kim’s obituary can be found at this link.

#hope #team #gratitude

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.)