Day: July 27, 2022

Advocacy highlight

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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

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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.)