A bit of background for those interested in a summary of treatment lines, in two parts. With a huge load of hope!
First since 2018:
I’ve been on Lorlatinib (a targeted therapy / cancer-fighting pill) since 2018. In 2020 we noticed progression so did radiation on those pesky spots, but did not get hoped for results. Our next plan (still in 2020) was to keep the Lorlatinib and add Pemetrexed / Alimta (IV chemo, 3-week cycles). This ultimately continued 24 cycles, till March 31 2022.
In February 2022 I was admitted to hospital with gradually worsening shortness of breath of unknown causes which had become very serious. I started on constant oxygen and have continued gradually increasing the flow. Many tests were done, but nothing jumped out as a likely cause. Steroids, puffers, a transfusion and a couple of other drugs were added to my list, but no major improvement.
In Spring 2022 I continued to decline and was doing very poorly. The experts wondered if it was due to the Pemetrexed, and decided to stop the IV chemo. I continued on the Lorlatinib, and every scan since has shown the cancer remains stable or shrinks a little. I’m still on oxygen, still not much better, but a little later today we’re going to talk about whether we should consider pausing Lorlatinib to see if that helps with breathing.
Always holding onto hope!
Now since 2013 Diagnosis:
December 2013 – April 2014 IV chemo, still coughing (4 months), pneumonia several times
July 2014 – May 2015 Crizotinib (11 mos)
May 2015 Ceritinib start. Scans clear fall 2015 (20 mos)
Jan. 2017 Alectinib feel better than had since Dx (20 mos)
September 2018 started Lorlatinib feel fantastic!
—-
October 2020 radiation, 5 days – then back on Lorlatinib
Pneumonia
November 2020, started Alimta (Pemetrexed) 3week cycle. Pneumonia after first cycle.
March 24/21, still going strong. Feeling better on Pemetrexed and getting stronger. Praying for new treatment options.
April 6/21, very tired this cycle, but on evening of 12th starting to feel energy returning. Praying for new treatment options.
Feb 2022 hospital for shortness of breath
April 2022 still short of breath and uncertain why Still praying for new treatment options.
There’s a fairly big appointment this week, so it seems appropriate to give a health update. I’m getting a PET scan (Positron Emisson Tomography) in the morning. I haven’t had one since just prior to diagnosis in 2013, though it’s common for our lung cancer sisters and brothers in the US to have them more regularly. I don’t remember much about my first PET Scan, except that it took place at the cancer centre and the technician was very kind. He greeted me with something like, “How goes the battle today?”, and I strongly remember bursting into tears because no matter how I may have felt about that kind of language, suddenly this cancer experience became very real and I felt that I was in a fight that seemed very big and serious. He gave lots of information back then, but much has been forgotten. One thing that stands out clearly was that I shouldn’t hug my kids afterwards because I would be radioactive, and that not hugging my kids was a very big, traumatic thing for me and my kids when I got home.
The PET scan should help give us information about where the cancer is or isn’t, to help decide future course of action. Areas which look like cancer light up in the scan because areas that are cancer eat up sugar more quickly than areas that aren’t cancer. They make the cancer light up on the screen by making some sugar in a person radioactive, if I remember properly, so that clearly distinguishes any potentially cancerous areas from normal ones.
The particular kind of cancer that has been attacking me and many friends is called ALK+, and there has been a lot of excitement for some time in the ALK+ community about a new weapon, a new drug being developed by Nuvalent against ALK+ cancer called NVL-655. (You can read more here or here if you’re interested.) They are in process of opening clinical trials, and there is hope that they will open clinical trials in Toronto and Ottawa (Canada, where I live), among other places. If Ottawa were to open one, it would probably be a phase two clinical trial which I wouldn’t qualify for since I’ve already had so many lines of treatment (but other people could potentially benefit greatly from it). There is the possibility that I might be able to be part of the phase one trial which might open possibly in Toronto (about 5 hours drive away) sometime in the months to come.
My oncologist and other experts who know me know that I very much would like to try this drug, and are taking action to make sure that we are doing everything we can to get access to this new drug, if possible, perhaps through clinical trial or perhaps through compassionate access.
The best people are on it, so we keep on holding onto hope.
Advocacy is about relationships. Who we know can mean the difference between life and death. I’ve gotten to know some amazing people who are advocating for me. We are very grateful.
Advocacy is also about urgency. Advocates need to fight for urgency.
I’m so glad to know powerful advocates!
Those of you who are praying types are powerful advocates, and we appreciate the very many of you who pray regularly for us. Thank you. Please pray for wisdom and for pathways to open up for me and many others. Please keep praying for healing and for God’s mercy. Thank you
I’m excited to share this recipe with you because this has been my favourite smoothie for many years. When swallowing was challenging in the winter of 2020-21, I was not even able to swallow this smoothie. I did some tests, then some exercises given by Emilie (pictured below), a lovely Speech-Language Pathologist. (Those who are interested can read more here: https://throughthevalley.ca/2021/01/20/health-and-advocacy-update/.) Swallowing improved and has been good ever since. For some time I’ve been able to eat just about everything. I still really enjoy this smoothie and want to share the recipe with you. Thankful!
We can go through times when it’s hard and we can start imagining that things will only get worse, but that’s not necessarily true. We can ask for help. Things can turn around. We can choose hope and hold onto hope!
Jill’s Hope Mango Smoothie Recipe
Approximately 1/4-1/3 cup of mango
3-4 celery stalks, chopped
1 Tablespoon peanut butter
1 scoop plain protein powder (unsweetened, unflavoured)
Milk to fill it to the max level
Blend it all together and enjoy!
Keep holding onto hope!
What is your cancer centre doing for World Lung Cancer Day August 1?
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:
Moderator
Lyudmila Bazhenova
An International Academic Oncologist Perspective
Pilar Garrido
North American/Community Oncology Perspective
Makenzi Evangelist
A Patient Perspective
Jill Hamer-Wilson
A Radiation Oncologist Perspective
Matthias 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:
A wider picture of my teammates: Dr. Makenzi Evangelist, Dr. Matthias Guckenberger, Dr. Lyudmila Bazhenova and Dr. Pilar Garrido with their The White Ribbon Project ribbons!
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.
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!
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:
Moderator
Lyudmila Bazhenova
An International Academic Oncologist Perspective
Pilar Garrido
North American/Community Oncology Perspective
Makenzi Evangelist
A Patient Perspective
Jill Hamer-Wilson
A Radiation Oncologist Perspective
Matthias 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!
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.
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
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.
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 clickHere 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.
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.
I don’t often write about faith or my personal life in this blog. This post is a little different, a glimpse into my inner life. Whether you choose to read further is naturally up to you.
I’m a follower of Jesus and my identity as a follower of Jesus is what inspires my actions and attitudes. The faith community has played a significant role in my life over decades and I am very grateful to connect with, be prayed for and supported in many ways by many different individuals, groups and congregations. It has also been one of my life’s deep joys to speak to so many individuals, groups and congregations.
Being a follower of Jesus was an intentional decision when I was 17 years old, and following Jesus is intentional every day since then. This is what motivates my life, and gives me love for people. This is what motivates my advocacy and what gives me love for people affected by lung cancer. When I say love, I don’t mean a soft and squishy feeling. I mean deliberately working hard for the good of people affected by lung cancer and other kinds of cancer. This is also where my hope comes from. This is what has kept me going all these years, through many difficulties, many hard times. Being a lung cancer advocate has been challenging. I have almost stopped many times. Much encouragement from Chris Draft and a number of other people has helped keep me going, as did a strong sense of calling. Advocacy is what I strongly believe I’m meant to do in this season of life. I have seized this opportunity and I keep seizing this opportunity, looking to live as best as I can given the circumstances, controlling what I can control. Saying yes. Thank you, God.
Below is a hymn that has been very meaningful to me for decades. My parents were both diagnosed with cancer when I was 20 years old, and died within a year, and that was when I first heard this hymn. I was introduced to it by opening up a used hymnal that I had just bought to a “random” page. I was planning to sit at the piano to play and sing some hymns, and the first time I opened it was to that hymn. The hymn captured me and spoke deeply to me right from the first moments I saw it, played and sang it. It was especially significant that year. It helped keep me going.
My Ottawa church, Parkdale United Church, sang this same hymn at the Maundy Thursday evening service this week. One of the ministers is planning to come over to anoint me with oil and pray for healing again this week. So grateful. I had a very significant talk and prayer time with another one of the ministers the other day, who has been praying for me and others affected by cancer for years. She is a strong supporter, a game-changer. She strengthens the soul. I’m very grateful for the pastors and members of this congregation who have supported us and kept us fed both physically and spiritually for years.
We’re strongly supported, and not just by Parkdale. So many of you have told me you’re praying, your team is praying, your church is praying. Thank you. I just got a lovely card and letter from someone from another Ottawa church the other day. Words cannot express our appreciation. I know I’m alive because God is merciful, because God hears and answers prayer. God gives skill to researchers, compassion to clinicians, wisdom and insight all around. God gives love. So very grateful.
The lung cancer community needs more love. I am working hard to pour more love into this community.
O Love That Will Not Let Me Go (Public Domain)
O Love, that wilt not let me go, I rest my weary soul in Thee; I give Thee back the life I owe, That in Thine ocean depths its flow May richer, fuller be.
O Light, that followest all my way, I yield my flickering torch to Thee; My heart restores its borrowed ray, That in Thy sunshine’s blaze its day May brighter, fairer be.
O Joy, that seekest me through pain, I cannot close my heart to Thee; I trace the rainbow through the rain, And feel the promise is not vain That morn shall tearless be
O Cross, that liftest up my head, I dare not ask to fly from Thee; I lay in dust life’s glory dead, And from the ground there blossoms red Life that shall endless be.
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!
Right after port insertion surgery, March 8, 2022Receiving chemo through the port for the first time, March 10, 2022.Just prior to having the dressing removed, March 15, 2022
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.
After the dressing was removedReceiving chemo March 31, 2022Healing up well, March 31, 2022.Today, April 7, 2022 The port is small, coin-sized below the scar. There is no pain and the scar will continue to heal in days to come.
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
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.)
Dr. D. Ross Camidge, MD, PhDCanadians at the ALK+ Summit in Atlanta, August 2019. Four were diagnosed with lung cancer. Can you tell which three are the caregivers?Dr. Christine M. Lovly, MD, PhD, BA
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.)
Through the Valley 