Lung Cancer and the Canadian Cancer Society

In my earlier days advocating for people affected by lung cancer, I heard rumours that the Canadian Cancer Society (CCS) didn’t give a fair amount of funds for lung cancer research. I did not know if that was true and believed it was important to find out. I determined to investigate, and learn how to advocate about this, but the Canadian Cancer Society seemed so big. I felt intimidated at first and did not know how to start.

Advocacy is relational work, and with encouragement from Chris Draft I worked on getting to know people at the CCS (and other organizations) and building relationships. People from the CCS reached out to me also and asked me to participate with them in various ways. They were interested and listened empathetically as I informed them about lung cancer.

For several years now I have been working with the Canadian Cancer Society. I have served as a panel member, speaking into the decision-making process about which research gets funded. I’ve shared my story quite a few times to raise support for cancer research in Canada and to inform and increase support for people affected by cancer. And of course there have been many conversations with thought-provoking questions and honest dialogue.

This year my lung cancer story is being used again as part of their holiday fundraiser, and also another big fundraiser in the new year. I’m glad to be part of significant cancer research fundraising as a multidisciplinary team member and that my advocacy training and life experience can make a difference.

Earlier this Fall I was also invited to be part of a panel member for the CCS Breakthrough Team Grants: Transforming Low Survival Cancers, specifically lung cancer and pancreatic cancer. (More info here.) It was very exciting to be asked to be part of this, especially due to the lung cancer focus, and I quickly agreed and submitted my “paperwork” to sign up.

Since advocacy is relational work, like so many other advocates I have worked hard to build relationships and partner with researchers and advocates from coast to coast to coast (and around the world). This has gone so well that when I filled out my Conflict of Interest form for the CCS Breakthrough Team Grants I realized that I knew and had partnered in research with a very large number of the research team members who had applied for funding. It was not a huge surprise, but very disappointing that the CCS team (after careful review) determined that I know and have worked with too many applicants to be a panel member this time. This time did not work out, but I’m definitely open to future opportunities.

The Canadian Cancer Trials Group (CCTG) is a national program of the Canadian Cancer Society. I’ve been part of the patient representative committee and lung executive with the CCTG since 2018. I’ve also spoken about lung cancer at CCTG Annual Meetings several times. Very grateful for the good work the CCTG does.

For quite a few years, I have been continuing to have conversations with people from the CCS about things related to lung cancer. They are generally eager to engage, and we are thrilled that this year there is special lung cancer specific funding available and that lung cancer researchers have applied. This increases hope and potentially can make a huge difference for many people affected by the deadliest cancer.

On average, 82 people in Canada are diagnosed with lung cancer every day. Lung cancer is the deadliest cancer, killing more people than the next three deadliest cancers combined.

More research means more survivors and better survivorship. Here’s to more research!

November is Lung Cancer Awareness Month (LCAM). What is your Cancer Centre doing for #LCAM?

Challenges and Choices

I won’t lie. This past month has been a challenging season, due to pain, nausea, fatigue and breathing challenges. Living with cancer can be very challenging, but thankfully the pain, nausea and fatigue are improving. I’ve had to hunker down and rest a lot, but am thankful to still be able to spend a little time with people, get some exercise and continue to do some advocacy work. We don’t get to choose all of our life circumstances, but we often get choice in how we respond. We can control the things we can control. Choosing to give thanks even in the midst of challenges can be a real game changer.

The upper endoscopy which happened the end of September (mentioned in the previous post) went well. We learned that my esophagus (food pipe) had narrowed to the size of a pin prick. No wonder swallowing was so challenging! The next day the phone rang with an appointment for a stent to be inserted in my esophagus the day after. A stent is a flexible tube to help keep the esophagus open to make it easier to swallow food and drink. I was very thankful for the opportunity to take advantage of a cancellation and get this taken care of quickly. That procedure was harder on me than I anticipated, and I slept for some time in the hospital afterwards. I’m thankful for Jackie Manthorne, President and CEO of Canadian Cancer Survivors Network (pictured below) who waited patiently, helped get my prescription meds and got me home safe and sound. So many people have supported by driving to and/or from appointments. What a good gift! Because this time was such short notice I put a request out on facebook, and had multiple offers within a few minutes. Thanks also to Robyn Denis who drove me to the appointment. So many have offered and have driven, and you have no idea how much it means. Thank you!

Awesome advocate Jackie September 2022
Kim Andrea and Robyn – awesome advocates. Photo credit: Chris Draft 2019

I’m very grateful that swallowing is so much easier than it was in September. In addition to liquids and puréed foods, I can carefully chew and swallow soft foods. This helped make (Canadian) Thanksgiving Dinner much more enjoyable. Very thankful for my middle child and her boyfriend who cooked a delicious vegan dinner for us. There was tons of food, mostly on the kitchen counter since it would not all fit on the table. I still eat very small portion sizes, and could not finish all the yummy veggies on my plate that evening.

Canadian Thanksgiving 2022
Canadian Thanksgiving 2022

I’m also incredibly thankful for the gorgeous weather we’ve enjoyed this Fall. I went out walking as much as I could, often with my youngest who I’m so grateful for, and our big sweet dog. Here is some of the beauty we’ve been able to enjoy this past month.

Today I’m especially thankful for two dear friends who popped by this afternoon. We are blessed with so many good people who generously support us. Love and support can make a world of difference, especially during the challenging seasons, and I can’t tell you how much that means.

Could I challenge you to choose a friend or neighbour to reach out to with love and support in the next few weeks? This does not need to be someone affected by cancer, but could be someone going through a difficult season. Please never underestimate the difference you can make for someone!

November is Lung Cancer Awareness Month! What is your Cancer Centre doing to celebrate survivors and raise awareness?

Scan Results, Swallowing and Advocacy

Time for another health update (with a bit of an advocacy update)!

I had another regularly scheduled CT scan, and like all the scans since I started chemo it showed that the cancer has either shrunk or remained stable. Good news! Amazing news, actually! Even while on a treatment break the cancer is held at bay. So very grateful! Seems like a miracle! My symptom management (palliative care) doctor thinks that perhaps my immune system now recognizes the cancer as something to attack. Really great news!

I haven’t heard a recent update, but it seems the clinical trial I’m hoping for probably won’t open up in Toronto until maybe December or next year. Ottawa probably won’t open it until the Spring. There are many hoops to jump through, and COVID has affected cancer research which affects so many people. The good news is that it does not seem so urgently needed by me right now. Of course urgency matters tremendously, as things can change very quickly. We never know how long we may be able to wait, and there are many people who need more treatment options urgently. Survivors matter!

More research means more survivors and better survivorship! I continue to pursue a variety of advocacy efforts, including cancer research and fundraising for research. Today, among other things, I connected with the Canadian Cancer Society who want to share my story again, and people from the Ontario Institute for Cancer Research and Canadian Cancer Trials Group. I also messaged Prime Minister Trudeau about lung cancer.

But back to the health update … I’ve faced swallowing challenges since the summer, even though I’m very careful when eating or drinking. I lean forward and place my chin on my chest when I swallow. I’m eating a lot of soup and some other very soft foods, one very small mouthful at a time alternating with sips of water. I only eat very small, very healthy meals, and try to eat four or five times per day to get as much nutrition as I can manage.

I reached out to the Speech-Language Pathologist who helped me a couple of years ago when I was having swallowing issues previously and did the swallowing study. She is lovely and we had an online appointment last week where she gave me a lot of helpful tips and reassurance.

A referral to an Ear Nose Throat doctor was made, with an upper endoscopy scheduled for this afternoon. I’m looking forward to learning what the procedure will tell us, though a little nervous about having a camera stuck down my throat. There will be sedation, and I think my kids are looking forward to seeing if I’ll still be feeling the effects when I get home. Apparently some people don’t remember anything about the procedure, so I’m hopeful it won’t be as difficult as the similar procedures I’ve had before.

November is Lung Cancer Awareness Month. What is your Cancer Centre doing to celebrate? #LCAM

Living on Oxygen: tips that have helped me

A few people have asked for advice about living on oxygen, including someone on the West Coast who I had a good conversation with yesterday. Seems like a good idea to share some tips that have helped me and to make it clear again that I have no medical training. These tips may not be suitable for you, so (as always) please talk with your own care team and bring your list of questions to them so they can answer with good advice specific to your situation.

Sending out love to everyone who is on oxygen, or considering it. Being on oxygen can be challenging, and I hope this post may make it a little better, even in some small way. We are never alone.

It is almost exactly six months since I went to emergency and stayed in the hospital for several days due to shortness of breath. I’ve been on oxygen ever since, 24-7. My oxygen rate requirement increased significantly over months, and more recently it has decreased a bit. This decrease is a real relief, since I was up to 10 on a machine that only goes to 10. I have a terrific respiratory therapist with the oxygen equipment rental company, and she brought over a second machine in case I needed to go above 10. These two machines can be linked together and go up to about 15 Lpm of oxygen. Very thankful I have not had to do this so far.

Being on oxygen can be scary and shocking. Some people have said they want to “tough it out” and avoid using oxygen, but it’s there to help us breathe better and if our team recommends it then it’s definitely worth trying. For me and for many others it made such a world of difference. I was having a hard time walking from one room to the next in my small home prior to going on oxygen. Even with it, I still need to move slowly. Walking slowly is challenging for me, and my kids will tell you that, as will anyone who was within hearing distance of us today while walking up and down the street, my youngest reminded me to slow down SO MANY times, out of love and concern. I need to be reminded. I get excited and tend to speed up. Oxygen is extending my life, and right now there is no option for me. I sleep with it, shower with it, and keep it going all the time.

When suffering from shortness of breath, it’s important to relax and take long, deep breaths. In through the nose and out through the mouth. This might feel like it’s very difficult, but it really matters. This is the way to change back to “normal” breathing, and it’s doable. Leaning forward in one’s chair, or on a counter or chair back if standing, can help also, as can sitting up straight and putting one’s elbows out so there is more room for the lungs to expand. Some people find it helpful to put a fan on. It seems counter-intuitive to slow down the breathing, but long deep breaths is important, and relaxing to make this possible is important. Ask your team what is best for you.

I’m using a machine that sucks in air from the room and shoots out oxygen through tubing which goes into my nose through a nasal cannula. This can be drying for the nose and throat, especially at higher flow rates, so Secaris nasal lubricating gel was recommended, applied using a very small amount on a q-tip. The directions say every 4 hours or as needed. I’ve been using it for almost six months and haven’t even used half of my 30g tube, but I don’t put it on as often as I maybe should. Perhaps this is too much information, but my nose bleeds frequently, especially in the dry weather and on higher oxygen levels. It is important to keep the airway clear so the oxygen can get through easily. (Also important to not use oily / greasy moisturizers near the tubing.)

Things can go wrong, and when one is relying on an oxygen machine to stay alive, it’s important to think these possibilities through and have plans in place, just in case. If my machine stops, a loud alarm sounds. This has happened a couple of times, and I’ve also accidentally pulled the cord from the wall (usually by trying to go too far from the machine, especially when the cord gets tangled up). Obviously, it has worked out just fine every time. One machine needed to be replaced, and a representative from the rental company came over and took care of that promptly. Also, we had an electrical problem in our home which required calling an electrician to get it fixed. He was great and had the problem solved within a couple of hours of calling him.

It’s important to regularly check for and straighten out kinks in the tubing that can decrease oxygen flow, including twists in the tubing by one’s neck. I check this several times each day, and always before going to bed. I monitor my oxygen levels (%SpO2) using a little device that fits on the finger, which also shows the heart rate. If you have one, you can ask your respiratory therapist to check for how accurate it is. I’m supposed to keep my oxygen levels between 91-95.

I also have oxygen tanks, with weekly deliveries to replace empty with full tanks (and bring replacement tubing etc.). Obviously, it’s important to stay on top of this. We make sure that there is always an extra tank nearby (ideally in the same room) in case of emergencies so we can switch the tubing from the machine to the tank for seamless oxygen supply. My kids are awesome about this and come running if the machine sounds. I use the tanks when out walking or going on trips to the hospital for example.

Speaking of hospital trips, when at appointments I use the hospital oxygen, whether a big tank on a wheelchair or being plugged into the oxygen in the wall by a hospital bed. It’s important to check the hospital tank gage levels because, even though they are so big, they can empty out too. Twice now I’ve emptied out all the oxygen from a large hospital oxygen tank. Obviously all worked out fine, but it’s important to have emergency plans in place and to ask for help when we need it. Very grateful for the people who’ve come rushing to help. I now always also carry my own tank for a back-up. It’s a bit awkward, but worth it. The rental company included a bag for the knee-high sized tanks so I put it on my lap in the wheelchair.

The thought of being on oxygen can bring lots of feelings, but if our team recommends it then it could really make a terrific difference for us, extending our lives potentially for months or even years. Ideally our team will figure out the cause and find a solution to improve our health, but until then we can benefit so much from the support of oxygen. Please make a list of your questions and talk with your team about them. They will have the answers that are appropriate for your best care. You can ask for a palliative care team for symptom management (studies show that people who have a palliative care team live longer and better – it’s not just for end of life care). You can also ask for a respiratory therapist and/or a physical therapist. Lots of people benefit from oxygen. We are never alone.

By the way, the dog seems to love oxygen tubing and is typically seen lying on it, often with his enormous head on it and/or his paws wrapped around it. As massive as he is, he has not decreased the oxygen flow, nor has he ever pulled out the electrical cord from the wall. Who’s a good dog!

#hope

#love

#oxygen

#life

#dog

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

Steroids

Dexamethasone, a.k.a. decadron, is a steroid commonly used by many people for many health conditions including cancer. I’ve been taking it in various doses daily since my hospital stay in February, almost six months ago. Something very important about this drug is to not suddenly stop taking it. It is critical to taper down before stopping. My care team has been working to find the best dose for me, and in process I’ve learned a few things.

First, can you tell these two pills apart?

If you look closely enough, yes you can, but don’t they look very much alike? These are both the same drug, but one is 4 mg and the other is 0.5 mg. How easy would it be to make a significant, health-altering mistake?

Dexamethasone is a steroid that people frequently vary the dose of, so often have both 4mg and .5 mg pills in their home, and frequently need to cut the 4’s in half. One of the two main issues I’ve bumped up against is how similar they look. It is possible to tell them apart, but very challenging. If you’re taking 3mg, for example, you would cut a 4 in half and add two .5’s, but if you accidentally got that backwards, you would ingest 8.25 and that could really hurt a person. The second is that it is very difficult for the ordinary person to break one in half. These seem like simple fixes with a design change on the 4 mg pill.

I’m feeling a little more energized and today I reached out to a dear friend who has a good friend who is a pharmacist to ask for contacts and advice on how to proceed it I’m seeking to drive change here. I don’t know how much energy I have for this, but could perhaps send an email.

Also really want to give a shout out to my pharmacist at the Glebe Apothecary who cut a whole bunch of 4mg pills in half for me last time I had the prescription filled. I asked about the cost of the pill cutter, but chose not to buy it, and when my pills were delivered they came like this. Such a good gift! This makes taking 2.5 mg daily so much easier! Very grateful.

#hope

#advocate

#living

#steroids

#decadron

#dexamethasone

#pharmacist

#pharmacy

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.

Recent Health Updates: Exercise

I had a PET scan, and appointments with my family doctor, thoracic surgeon/respirologist (who may do a biopsy) and oncologist recently. Good news all around! (Which may not be 100% precisely accurately remembered / communicated here.)

First of all, you may already know this bit of background I’ve been on Lorlatinib (a targeted therapy / cancer-fighting pill) since 2018. In 2020 we noticed progression so we radiation on those pesky spots, but that didn’t work as well as we’d hoped it would. Our next plan (still in 2020) was to keep the Lorlatinib and add Pemetrexed (IV chemo). This continued for 24 cycles, but in February 2022 I was admitted to hospital with shortness of breath of unknown causes. In Spring 2022 the experts determined that I was doing very poorly, likely due to the Pemetrexed, and stopped IV chemo for a treatment break. I continued on the Lorlatinib, but after an appointment with my oncologist very recently, we have decided to take a brief treatment break to see how I do on no treatment for a little while. Please note: these are just treatment breaks. 

My family doc has agreed to look into what may be causing the shortness of breath, since it’s not necessarily cancer, which is great news! My oncologist also is referring me to a specialist who may be able to help with this.

The thoracic surgeon / respirologist said the PET scan revealed there is a small spot which may be measurable disease that he can easily biopsy if needed for the clinical trial. He also said that shortness of breath is natural since my lungs have much smaller capacity because of the scarring from cancer, the treatments, pneumonias, etc. This could have been discouraging, however when I asked what I could do to maximize what I’ve got and live as well and as long as possible, his answer was inspiring! This expert said that exercise makes a difference. Exercise is helpful – even when suffering from shortness of breath and in need of oxygen – and will influence all aspects of health. It doesn’t have to be at the pace that we might think. He encourages, for example, walking at a slow pace where we can still have a conversation with a friend and breathe. It matters that we keep pushing ourselves, at a slow pace, and it will help us to live longer and better.

Survivorship can be challenging. We need to remember that we are stronger than we think we are and by pushing ourselves a little, at a slow pace, and asking our friends to support and encourage us, we can potentially live longer and better.

Very grateful for Andrea Redway, for coming with me to the thoracic surgeon and also taking notes! (Everyone needs support and an advocate.) Still grateful for the cake made and brought by the awesome Vanneste sisters back in 2017 for our outreach table for World Lung Day. What a great surprise and generous gift that was! August 1 is World Lung Cancer Day. What is your Cancer Centre doing to celebrate?

#hope

Also very grateful for the ALK group who hosted a zoom call recently with people from Nuvalent, the biotech company developing the drug that I’m hoping to gain access to, potentially through upcoming clinical trial later this year. (Very grateful for Nuvalent.) One of the things I love about this trial is that the team has worked very hard to make it as accessible as possible to as many people as possible. So, for example, you can have had multiple prior lines of treatment. You could be 107 years old. You could have ALK cancer, but not specifically ALK lung cancer – even rarer. You can even live in Ottawa Canada.

(Note: most pictures here are pre-COVID.)

Jill’s Hope Mango Smoothie Recipe

Choose hope

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?

#TheWhiteRibbonProject www.thewhiteribbonproject.org

#hope

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