Celebrating Victories

How much it matters to celebrate even the small victories! Especially during tough times, we celebrate progress, we celebrate little wins, we celebrate each step on the path toward our goal.

Many of you know I’ve been working on walking more and it has been challenging. Ever since I was in hospital for shortness of breath in February, and even before then, shortness of breath has at times made it challenging to walk even a couple of steps. I’ve set out chairs in my home to help me make it from room to room. Our home is not large, but there were times I could not walk to the next room without a rest to let my blood oxygen levels rise – even while on oxygen.

I walked in the house with oxygen very slowly, and aimed for a six minute walk each day initially. Often I had to rest more than once during the six minute walks. Eventually the length of walks could increase with fewer rests. The whole time, the goal was to keep my blood oxygen level between 91 and 95%. Often it would dip way down in the 80’s very suddenly. Sometimes even to the low 70’s. Not good.

My treatment breaks seem to be doing good for this body so far, and we are very grateful and quite excited about this – about being alive. To be real, it seemed that I was very close to death for a couple of months. Quite a few people have said they thought so, including my palliative care doctor.

I’m doing better in general, and even on lower oxygen levels in recent days. So very thankful!

I’ve been walking up and down on the street for a few months, with a walker or carrying my oxygen tank, or pulling it with a little cart. I’ve worked on lengthening these walks, and have been able to walk to the end of the street and back most days recently.

Yesterday, with the support and encouragement of my kids, we walked around the block together. Two of them were with me, and they said (if needed) one could run back and get my walker while the other stayed with me. One carried my oxygen tank and the other helped watch my oxygen monitor. Together we made it all the way around the block. First time in over six months!

Those of you who know where I live will tell you it’s not a long distance, not a big block. We still celebrate small victories, and this one felt really big. You are invited to celebrate together with us! I was tired today, and just walked up and down the street this evening, but yesterday, together we proved that I am able to walk all the way around the block. Gosh it felt good!

We don’t have cures for lung cancer the way we would like yet, but more and more treatments are being developed and getting approved. We celebrate the small victories on the path to cures.

One of my doctors said they don’t understand why I’m doing so well on this treatment break. There is so much to learn about cancer and treatments, and people’s responses to treatment. Did my body kick into gear and start fighting off the cancer? That was this doctor’s theory, based on over 20 years experience with people affected by different kinds of cancers. I don’t know why my scans are looking better and I’m feeling better, but I’m giving thanks for this beautiful good gift of extended life.

Here’s a big shout out to those who speak encouragement into my life. You make a world of difference. Thank you from the bottom of my heart. Cheers to you! You are helping to keep me going. Encouragement and support really matter.

Cheers to the researchers, doctors and teams who are working for better, longer lives for people affected by cancer! I know for a fact that doctors are cheering for their patients and very happy when we do better. When you get the opportunity, please say encouraging words and thanks to people who encourage and care for people. Please support and encourage and thank those who research, who work very hard for small victories, with hope for effective treatments and cures. So much gratitude and hope!

Those of you who are following this story and cheering for health improvements … please join in and celebrate this victory!

#gratitude

#hope

#treatmentbreak

#chemo

#targetedtherapy

#cancer

#lungcancer

Virtual / Reality

We have a carport and it’s a great place for visits most of the year. A dear friend from High School ordered a heater for us and had it delivered shortly after a chilly visit last Fall, and that has extended the carport visiting season. So grateful!

It’s very special to be able to meet with people in person, and this summer quite a few friends are coming to town and making time for carport visits. Yesterday a childhood friend (we used to play piano duets together) came from the Seattle area and her Mom (who still lives in the same home with the same phone number (which I and so many others still remember)) came to visit. Such a treat! It’s so good to see people in person, even from 6 feet apart outside. In my opinion, it’s better in person than at a distance. Better in reality than virtually, in my opinion.

Don’t get me wrong, virtually is good, and in some circumstances it can open doors and provide opportunities that would not otherwise be possible. This is one of the silver linings of COVID and don’t get me wrong, I am grateful. It’s so good to meet “face to face” virtually when it’s too challenging (for a potential variety of reasons) to really meet face to face. There are good reasons for both. There is a season for everything. So grateful for a variety of options.

This is one of the reasons I’m such a fan of and advocate for CRAFT, 3CTN’s framework to make clinical trials more accessible for Canadians living in remote and rural parts of our geographically huge country. So important! 

Here’s a short video about CRAFT with some great quotes from a few people which was made over a year ago. CRAFT has now been rolled out and is serving people at several locations.

Zoom and other similar platforms have enabled many of us to speak at international conferences and other events the past couple of years. I’ve spoken at so many virtually, and we recognize the upside of not having to travel and spend time away. This has been a good gift which has also been a real difference maker for many of us.

Speaking personally, these visual platforms have also transformed much of my patient research advocacy in other ways. I used to have so many phone call meetings prior to COVID, and some of them with quite a large number of people. Initially I hadn’t met all the researchers in person and I did not always recognize all the voices. Sometimes some of the people did not introduce themselves when they started speaking and it could be challenging to figure out which person (from which place) was speaking. It’s so much easier with platforms that can show faces and even list their names. So much easier to get to know people and be better able to contextualize their comments. So  much better for community building than a mere large group phone call. So grateful for this!

In recent months, many members of the lung cancer community and other friends have sent gift certificates for our family to order food in. It means so much to receive this support that comes with love and appreciation. One ordered pizza for us, several have brought food, and many friends including our church community has brought much food and sent food in various ways as well. It’s such a treat and very much appreciated. Twice people have sent fruit bouquets which are so delicious, and so many other yummy things have arrived at our door – too many to name, and received with tremendous appreciation whether sweet or savoury. Thank you!

I’m very grateful for local friends who have done things this week – again, too many to name – like offer to pick up a walker for me, or regularly walk our dog. The reality is that there are times when we need real physical, local support. So many people here in Ottawa have offered and/or given support when needed, for example, rides to appointments, picking up groceries etc. Where would we be without our local people?

As much as we appreciate the virtual reality, we recognize there are some things that obviously cannot be done from a distance. Even for those who are part of strong virtual support groups, it seems obvious that it’s important to make sure we are also cultivating relationships with people in our own geographic community. We never know when we might need local support.

Please let me say again that we are incredibly grateful for the reality of this local support as well as the support from a distance.

#love

#hope

#support

August 1 is World Lung Cancer Day. What is your cancer center doing to celebrate?

Advocacy highlight

One of many advocacy highlights happened at the AACR Annual Meeting in Atlanta in 2019. I was at the Convention Center, working on a presentation about immunotherapy for the Scientist <–> Survivor Program, while hanging out with several people, including Rhonda Meckstroth and Chris Draft. Chris knows just about everyone, and was talking with many of the researchers who were passing by there. He introduced some people to us, especially if they would be good people to interview about immunotherapy. Chris is a great connector and loves to share his resources with others. The lung cancer community has benefited so much from him. He’s always available to us.

Suddenly Chris nudged me and pointed to a small crowd walking by. In the midst of this crowd was a man who looks kind of like your stereotypical scientist. He looked very familiar to me. He looked very much like Dr. Jim Allison, Nobel Prize Laureate for his work on immunotherapy. I felt very excited and very shy. I asked Chris if it was really him. Yes, it was. (Of course it was – he was there presenting.) I wondered if I should go talk with him. Yes, I should! I went running after his entourage and tried to get through the crowd. They weren’t letting me, but when Dr. Allison heard that I was a lung cancer survivor advocate, he told them it was ok to let me in. He warmly welcomed me into his circle and a big wave of gratitude washed over me for this man and his team who were history makers, who had changed so many people’s stories and extended so many lives. I was very excited to be able to tell him that he had made a huge difference for the lung cancer community, saving many lives including some of my friends. I thanked him on behalf of the lung cancer community, telling him we were very grateful for him and his team. Expressing gratitude matters

#gratitude

#hope

Please note: some of my previous posts have not been saved as expected, so keeping this blog updated has been challenging. Also, a fairly recent post published before it was intended, so many edits were not made. The main correction to make clear is that we are not stopping treatment, just taking treatment breaks.

Presenting at ASCO (American Society of Clinical Oncology)

Presenting at ASCO, the world’s largest cancer conference, was a great opportunity to strategically represent lung cancer survivors and cancer survivors worldwide.

It was a terrific experience, so good to work with awesome co-presenters and bring significant contributions along with them on our panel discussion:

Where Do You Go When You Put Your Best Foot Forward? Challenges After Upfront Use of Next-Generation TKIs in Driver-Mutated NSCLC. We gave a 60 minute panel session during which we discussed cases in an interactive manner with the audience. Here is the multi-disciplinary team:

ModeratorLyudmila Bazhenova
An International Academic Oncologist PerspectivePilar Garrido
North American/Community Oncology PerspectiveMakenzi Evangelist
A Patient PerspectiveJill Hamer-Wilson
A Radiation Oncologist PerspectiveMatthias Guckenberger

As far as we know, only two lung cancer survivor advocates presented at ASCO, and this is the first panel discussion with a patient/survivor/caregiver advocate. Here is a tweet from our moderator:

I echo our moderator’s Tweet: Great job, ASCO! Thank you for including this survivor advocate as a co-presenter at #ASCO22! May there be many more of us to follow! Well done, team! Thank you for caring about your patients. A real pleasure to present with you. An extra big thanks to ASCO for changing things up to including me in an online format when health would not allow me to present in person. This shows that ASCO values the survivor voice. #grateful

Here are some of the things we spoke on … biopsies, holding targeted therapy during radiation, questions about increased toxicity with potentially no clear benefit, different kinds of lung cancer like ALK, EGFR, EGFR C797S …

Before the presentation, I reached out to some people affected by lung cancer from here in Canada as well as the United States and around the world to bring their input into the presentation, to be able to represent them as best as possible. They brought a lot of good input, and the time was definitely too short to say it all. Here are a few of the things I said …

Each patient is unique, and every patient-doctor relationship is unique. I urged oncologists to not make assumptions (e.g. that we can’t afford it), but instead to ask questions, discuss options with us. Please inform us of the pro’s and con’s. Empower us to make good decisions with you. And always be empathetic, because getting a lung cancer diagnosis can be traumatic.

Here is the link if you’re interested: https://meetings.asco.org/2022-asco-annual-meeting/14236?presentation=205915#205915https://meetings.asco.org/2022-asco-annual-meeting/14236?presentation=205915#205915 You may need to sign in, and I think it’s free for survivor advocates but I’m not sure about others. You may have to ask the good folks at ASCO and I’m sure they’ll help you out.

A number of cancer researchers and organizations are working on figuring out how to engage with people affected by cancer. Some are effectively including patients/survivors/caregivers at the table. This is best practices.

Many of our advocacy efforts have been about strategically creating pathways to make it easier for others to also do advocacy. Two lung cancer survivor advocates presenting at ASCO this year? Let’s work for many more in years to come!

#hope

#pathways for advocacy

#strategic

Together with some terrific panel members, we’re presenting at ASCO Tuesday morning

ASCO, The American Society of Clinical Oncology Annual Meeting, is the world’s largest cancer conference, and it’s happening now, in Chicago and also with online sessions. This year’s theme is: Advancing Equitable Cancer Care Through Innovation #ASCO22. You can check out the program, which features over 200 sessions, here. The online platform includes 85 livestream sessions and more than 2,500 poster presentations.

Our session is Tuesday morning: Where Do You Go When You Put Your Best Foot Forward? Challenges After Upfront Use of Next-Generation TKIs in Driver-Mutated NSCLC. We have a 60 minute panel session during which we will discuss cases in an interactive manner with the audience. For example, we’ll have Question and Answer, Multiple Choice Questions for the Audience, and a “Likely Scale”. Should be fun! Here is the team:

ModeratorLyudmila Bazhenova
An International Academic Oncologist PerspectivePilar Garrido
North American/Community Oncology PerspectiveMakenzi Evangelist
A Patient PerspectiveJill Hamer-Wilson
A Radiation Oncologist PerspectiveMatthias Guckenberger

Last Fall when I said yes to this exciting opportunity, the ASCO organizers emphasized that it was important for all presenters to be physically present in Chicago for ASCO, but since my health declined I’m now unable to travel. I reached out to the ASCO team to ask if it would be possible in this case to present virtually. Very grateful that the ASCO team highly values the survivor advocate perspective and is willing to work for a process for virtual participation. It’s great to have good teammates!

Speaking of good teammates, a big shoutout to Chris Draft who has been making The White Ribbon Project Ribbons and delivering White Ribbons in multiple languages to many people at ASCO this year, including some of my co-panelists. Thank you, Chris and Team Draft!

#ASCO22

#ResearchMatters

#hope

#targetedtherapy

#nsclc

#lungcancer

#ASCO

#team

#survivorship

#grateful

#chicago

Happy Cancer Survivors Day! advocacy + brief health update

Happy Cancer Survivors Day! Cancer affects so many of us, whether directly or indirectly, and it’s exciting that right now the biggest cancer conference in the world (ASCO) is happening in Chicago and online because more research means more survivors and better survivorship.

There is much talk of new treatment options and potential cures, and I can’t tell you how thankful we are for research and all involved in the research process. Just over a week ago, terrific Canadian ribbon makers, Lisa and Bill Weir and awesome advocate Chris Draft and I were representing The White Ribbon Project, speaking to a group of the lung team members from a pharma company, communicating how thankful we are for the research they do, and how important research is to the lung cancer community. What a difference research makes! #ResearchMatters

This pharma company team did a terrific job all around. They were well-organized and effective communicators who sent a thoughtful and well-written thank you email afterwards including promises of ongoing partnerships. What a great day! The pharma company teammates made White Ribbons together with those three team members from The White Ribbon Project who were able to go in person and be at the same place to make ribbons together. I would have travelled there too had I been able, but instead very thankful that they effectively set things up so I could speak online.

Speaking of my health, I’m still on oxygen and we don’t know why there is still shortness of breath.

Dr. Nicholas, my oncologist, suggested it could be good to take a break from chemo to see how my body responds and also the cancer. Last week’s CT scan showed that the cancer remains stable or improved – great news! I still have shortness of breath, but most days am feeling much better, so that’s a real plus.

Dr. Nicholas has been working on discerning a good path forward. I may be able to participate in a clinical trial which may start in Toronto in the Fall, but there are still more hoops to jump through before this can happen. I’m very thankful for Dr. Nicholas who works very hard for his patients.

Celebrating cancer survival together with the awesome Andrea Redway on her seventh cancer-versary! Over fifteen years of survivorship (and two metres) between us!

Andrea (above) is also a patient of Dr. Nicholas. Here she is, celebrating her seventh “cancer-versary”, also on the same day as the ribbon build! When she was first diagnosed, the cancer had already spread through her body and she was very close to death. She and her husband advocated for her to get the life-extending surgery she needed, and a less experienced surgeon was willing to do it even when a more experienced one was not. Together with Dr. Nicholas, Andrea and Michael looked possible treatment options and talked about immunotherapy back in earlier days when it was not so common. He was quick to get the paperwork done and Andrea is alive and doing well seven years later. She is an amazing advocate and we are so very grateful for her and the good care she has received.

It matters to keep holding onto hope and continue advocating for more research and for advances in research to get to people who need them. Researchers are working hard to find cures. Research advocates have an important part to play, representing survivors, patients, their family, loved ones, and the public. It is important that we are trained and well educated so we act like professionals and work effectively.

Another meeting I got to be part of that same day was with the team that is working on Canadian Cancer Clinical Trial Network’s (3CTN) Precision Oncology Map that some of you may know about. Last Fall the Canadian Cancer Clinical Trials Group earned the Bayer Precision Oncology Patient Innovation Award grant of $25,000 and is using it to improve clinical trials for people living with cancer in Canada. 

This team has been working to develop a map of all the Canadian cancer clinical trials so that patients, caregivers & clinicians can more easily find suitable trials and researchers & sponsors can search for gaps where more trials are needed. We are still looking for feedback on how user-friendly the current test version is, and if you are interested, you are welcome to help.

If you would like to look at the map and potentially give feedback, please click on the link below and explore the map, then send a brief email info@3ctn.ca with your thoughts about strengths, weaknesses and suggestions for improvement. Precision Oncology Map: https://app.powerbi.com/view?r=eyJrIjoiNmM2MmE0NmQtMGI5OC00NDdjLTgxMzMtM2ZmNzQwYjRkMjM3IiwidCI6IjlkZjk0OWY4LWE2ZWItNDE5ZC05Y2FhLTFmOGM4M2RiNjc0ZiJ9

Below are some pictures from that awesome build mentioned above. Thank you to Lisa and Bill Weir (with the great tee shirts), Amy Hayes, Lorraine Hudson, Grace Oha, Lung Ambition Alliance, AstraZeneca and the awesome advocate and photographer, Chris Draft. Great day! Thanks also to Heidi and Pierre Onda, founders of The White Ribbon Project.

Bill and Lisa Weir, Lorraine Hudson, Amy Hayes, Grace Oha

#hope

#The White Ribbon Project

#lungcancerawareness

#sensibilisationaucancerdupoumon

RIP Brigitte Levigne

It is with profound thankfulness for her life and advocacy, and with deep sadness we share that our dear friend and lung cancer sister, Brigitte Lavigne who is also known as B or Bee Thevine, passed last week. She and her dear friends and family have participated in lung cancer advocacy, including making ribbons as part of The White Ribbon Project and supported others of us affected by lung cancer. They have been awesome supporters and advocates. Brigitte was one of my big encouragers, and I know many other members of the lung cancer community would say the same. We are so very grateful to have known her, and to have connected with her community.

Brigitte loved Easter. Last Easter she gave me flowers and a card. She gave so much joy. She was a silver lining of lung cancer for very many of us.

Here is her beautiful obituary (pasted below):

Obituary of Brigitte Lavigne

Peacefully on Thursday, April 14,2022 surrounded by her family at the Ruddy Shenkman Hospice, Brigitte leaves behind her caring and supportive husband, Kyle, beautiful and courageous children, Kiera and Liam, wonderful brother, Ben, attentive sister-in-law Laura, lovely niece, Simone, loving parents, Michele and Ron, gracious parents-in-law, Brian and Janet, and thoughtful sister-in-law, Kathy.

Brigitte is ever so grateful to her strong community of friends, colleagues, and neighbours, who accompanied her and her family during these difficult times and throughout her life.

She will be missed by her strong and influential besties from Montreal, the poker princesses, University friends, the Bel-Air babes, her training partner and the girls from Toronto and PEI. These friends helped shape Brigitte in more ways than they could know.

Her amazing medical team was held in high regard. Compassionate and caring  oncologist, Dr. Nicholas, kind and concerned respirologist, Dr. Graver, palliative care doctors, supportive family physician Dr. Bordeleau, home care nurses, specialists, hospice caregivers. Brigitte benefitted from specialized care at the Ottawa General Hospital Cancer Centre, the IGFCC, and was regularly seen at the Queensway-Carleton Hospital. She had nothing but positive words about the medical care she received and referred to them as her dream team.

A loyal public servant who dedicated her career to public safety, Brigitte enjoyed running, spending time outdoors, engaging with people in her community and being a mom. Her children were the centre of her universe.

Brigitte was supported by a strong network of lung cancer sisters whom she fondly spoke of as her sisterhood. She learned about advocacy and was actively involved in The White Ribbon Project, participated in cancer patient research, donated her cells to a cancer line project and was a member of the ROS1ders. 

Brigitte was honoured by the ICAN International Cancer Advocacy Network through the Brigitte Lavigne Research Advocacy Program (Rare Resistance Mutations) to promote resistance research.

In lieu of flowers, please consider donating to the ROS1ders, Please click Here or the Ottawa Race Weekend Team raising funds for Lung Cancer Canada in honour of Brigitte,Please click Here

A private gathering will be held for family. A Celebration of Brigitte’s Life will be held at a later date.

To express your condolences or make a donation please visit http://www.hillcrestfuneralhome.ca

A Tree of Remembrance for Brigitte will be planted at the McAlpine Forever Forest, Vankleek Hill.

Funeral arrangements in care of Hillcrest Funeral Home Ltd., 151 Bond Street, Vankleek Hill, ON K0B 1R0 (866) 678-2002.

The picture above is from when I first met Brigitte in person and was privileged to give her White Ribbons with love. Right from the start she wanted more than one so she could also give Ribbons with love. This picture was taken before she was ready to publicly show her face or share her name, March 17, 2021.

Some of the pictures below are from our Ottawa Community Ribbon Build in August 2021, when Brigitte and her good friend, fellow advocate and The White Ribbon Project teammate Jesse, and her two children came to work on Ribbons. Brigitte loved all her people, but her children especially meant the world to her. We were so glad they could come to the build and we could meet them. It was great spending time with them and Jesse that day, as well as Brigitte. Brigitte gathered a community of amazing people, and spoke often of her family, friends and community. Other pictures are from a later date when Brigitte came over to put labels on and receive more Ribbons to give away. The day of the Ribbon build was so hot and humid that the ribbons showed no signs of drying anytime soon, so we had to be patient. It brought Brigitte so much joy to put on French labels. She knew that The White Ribbon Project is about love, that ribbons are given with love and received with love and that language matters. This was a good fit for Brigitte who was bilingual. She loved and advocated in more than two languages.

Brigitte activated a team who rose up doing advocacy. Even in this last month, Brigitte and her team did powerful work, delivering The White Ribbon Project Ribbons to our hospital and cancer centre in the west end of Ottawa, where she received much of her care, where I received my first rounds of chemotherapy back in 2013 and 2014. She participated in as many The White Ribbon Project community zoom calls as she was able, and yearned to be part of them when she wasn’t able. She and her team have made and will continue to make Ribbons. So far they have made 24 and 6 more are in process. They have given 20 of these ribbons with love, in addition to the several Brigitte was given by me. She also received a special honour with a named program that would focus on Research Advocacy on Novel Therapeutics for Resistance Mutations, i.e. a Brigitte Lavigne Research Advocacy Program (Resistance Mutations in Rare Cancers). She kept advocating until she could not any more, and she died knowing her community would step further into advocacy.

She powerfully loved people her whole life, and that did not change after her lung cancer diagnosis. A cherished member of our Ottawa Lung Cancer Support Group, she reached out with love to members of the lung cancer community locally and all over. She cared about people with her specific kind of lung cancer, and people with any kind of lung cancer. So many people talk about the difference she made for them. She loved us and she messaged us so much! She also loved her care team, spoke highly of them and thanked them. She made a special presentation at the West end hospital where she received much of her care and they did a special story about her. She embraced the inclusive nature of The White Ribbon Project, and gave Ribbons to a wide variety of people connected to lung cancer in various ways, including members of her care team. Even in the short time I knew her I could see that everywhere Brigitte went she brought joy and love. I’m so thankful to have met her, loved her and welcomed her into the lung cancer community. I’m so very thankful for our oncologist who encouraged her to connect and told her about our support group.

Port update and today’s advocacy highlights

Several people have asked how things are going with the port, so it seems good to tell you that it’s going well! I’ve had chemo through it twice now, and having it changed the whole flavour of the chemo appointment. Instead of wondering with some measure of dread how many pokes would be required before success, each time the nurse had success on the first poke. Such relief! No more heating of the arms, no more slapping or pressing in search of sneaky veins. Both times the nurse simply inserted the needle into the port and all was well. Such relief!

Full disclosure: it hurts a little when the needle (for chemo) goes in. But so much less than when the nurse has to poke around for the vein. There are several pain relief options which could be used. Also, the phlebotomists at the Cancer Centre lab need to poke for blood draws for the blood test that we do every 24-48 hours before treatment, since they are not authorized to use the port. Blood draws don’t tend to hurt, and usually work on the first attempt.

Advocacy highlights: Great day today! Two significant conversations this morning to tell you about: one with someone diagnosed with lung cancer looking for support. She is interested in doing some advocacy also. The other with another person diagnosed with lung cancer who has set up a meeting for us with her MP to attempt to move access to Lorlatinib further forward. We spoke this morning to discuss strategy and make specific plans for this upcoming zoom meeting. I really appreciate being teammates with people who care and who appreciate the value of being part of a good team. Advocacy and life go better with good teammates.

Of course there were many more things on the agenda for today, but those are two being highlighted for today. Those and also this lovely card which just arrived from Martina, another good teammate and fellow cancer research patient representative good teammate. What a treat to receive such a thoughtful gift from a good teammate! #blessed #grateful #team

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