Targeted therapy

Celebrating Victories

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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

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

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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 World Cancer Research Day!

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Biomarker Testing + Research + Access = Life

I’m alive today because of biomarker testing, research, and access to new treatment options. Yes, and great care from my oncologist, Dr. Garth Nicholas, and healthcare team at The Ottawa Hospital Cancer Centre.

I was diagnosed with stage 4 ALK+ lung cancer in 2013 when my children were only 6, 10 and 12.

I started on chemo, then four different targeted therapies … Most treatment lines lasted only a year or two; each gift of time meant more life, more time with family and friends, more opportunities to serve as a lung cancer advocate

Every month, every year has meant memories and milestones, opportunities to celebrate life and be with my kids as they have grown. 

My youngest was just about to start grade one when I had a cold with a cough that wouldn’t go away which was eventually diagnosed as lung cancer. Now she is in grade 9, just started high school. My middle child can play almost every musical instrument and will graduate high school this year. My oldest, who was in grade 7 when I was diagnosed, is now in third year university, studying Electrical Engineering and Physics.

I can’t tell you how thankful I am to still be with them. Very thankful for biomarker testing, research and access to new treatments… and my terrific healthcare team.

Targeted therapy is such a game changer. New targeted treatments are so much better than chemotherapy – it’s a night and day difference – and these new treatments keep getting better and better!

Targeted therapy means more energy, more good days, more ability, more time for the people we love, more time for what matters, more life.

My children are my top priority. I am also passionate about lung cancer advocacy. I started on Lorlatinib in 2018, and it has given me great quality of life, so I have been able to invest about 30-40 hours a week in lung cancer advocacy.

This is an excerpt from a presentation I’ve been making (as part of a team) to a number of groups this month. Next come many slides with pictures and quotes from people affected by lung cancer, people who I love, who are like family to me. They are living life more fully, because they have access to new life-extending treatments called targeted therapies. These are people who matter and are worth fighting for. I’m honoured to “bring them with me” as part of these presentations, and appreciate very much their willingness to share pictures and stories with the goal of increasing access to new drugs.

The presentation is about the importance of fighting for people to get access for new targeted therapies, because this is a matter of life and death and people matter. Research alone isn’t enough. We need to enlarge the boundaries of our concept of research to also include biomarker testing and access.

What are new drugs worth if we don’t do biomarker testing to find out which people will likely benefit from the new treatment? With 100% biomarker testing we will know specifically which type of cancer more people have, and be able to match more people with effective treatments. With 100% biomarker testing, we will also be able to more quickly accrue more patients to our clinical trials so the trials will show results more quickly, and effective new treatments can get approved and funded sooner.

What is the value of researchers working hard to develop effective new treatments, if people cannot get access to them? Access matters. It is often a matter of life and death. We must work to close the gaps and make sure people can benefit from research. Could you imagine how hard it would be to be a dying cancer patient who knows there is an effective treatment that would very likely extend their life, but they can’t get access to it? How hard would it be to be the patient’s loved one? The patient’s oncologist?

Biomarker Testing + Research + Access = Life

On this World Cancer Research Day, let’s celebrate research and researchers! Let’s celebrate fundraisers, administrators and patient partners! Let’s celebrate the entire research team! Let’s broaden our concept of research and fight together for more people to benefit from effective new research.

#BiomarkerTestingMatters #ResearchMatters #AccessMatters

#Hope #ResearchWorks #WorldCancerResearchDay #PeopleMatter

(Note: photo above is Dr. Vicky Forster, Toronto; photo’s are all pre-COVID.)

  • Dr. Garth Nicholas
  • Ottawa Clinical Trials Team
  • Dr. Ross Camidge in Ottawa Canada
  • Dr. Jim Allison, Immunologist and Nobel laureate.
  • Dr. Christine Lovly, M.D., Ph.D., Vanderbilt
  • Sung Poblete, PhD, RN, President and CEO, Stand Up to Cancer

My Roller Coaster Adventure Ride

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Well, that bump was bigger than expected! Sadly the radiation in October did not do the cancer-crushing work we were hoping it would. My recovery wasn’t going as well as anticipated, and tests showed I had pneumonia as well as cancer growth. My oncologist and I discussed chemotherapy, which is the only treatment option available to me currently.

My oncologist and I both reached out to some Canadian lung cancer researchers to investigate whether there might be a clinical trial suitable for me available in Canada, either now or in the near future. I was disappointed but not surprised to learn that there is nothing on the horizon.

There are some possibilities in the US, so I applied for the “ALK Second Opinion Program”, which is funded by some generous people affected by the same kind of lung cancer that is affecting me (ALK). I learned within a couple of hours that my application was accepted, so the program will pay for me to have an online appointment with one of the top ALK researchers in the world. I have met most of the doctors on their list, and it is a tough decision because they are not only brilliant but also very kind. I plan to go with the Boston team because, although Dr. Alice Shaw is not spending much time seeing patients there now, they may have a clinical trial appropriate for me in future, and Boston is much easier to travel to than Nashville or Colorado. My oncologist has very kindly offered to participate in the online appointment with me, and one of my dear ALK sisters has offered to walk with me through this process. I’m very grateful for the support.

I had my first chemo of 2020 on Monday November 30. It hit pretty hard, and I had to go to emergency with a fever which turned out to be another round of pneumonia. Antibiotics helped a lot, and I’m feeling much better. I’m still very tired, coughing a fair bit, and having problems swallowing (since August). Thankfully there is soup, and I’m very grateful for friends who have brought so much soup!! It’s great to have different kinds of soup that I don’t typically make, and it’s so nice to not have to make it myself!

My next chemo is Monday December 21, which will get me through the holidays, as my awesome oncologist noted. The following one is scheduled for January 11. Apart from the blood tests on the Fridays before, I’m hoping to not need any additional hospital visits! 😀

This is quite a change from the targeted therapy lifestyle, which tends to be much more smooth sailing, with fewer appointments and blood tests. I’m so very grateful for my many years of reasonably good health while living with stage four lung cancer. I never expected to live seven years past my diagnosis, and now I have much more hope than I did at diagnosis. I am hopeful for new treatment options. I hope that the chemo I’m on now will work more effectively with fewer side effects than the older harsher chemo I took in 2013-14. I hope researchers will develop new treatment options that will be available just when I need them. That has been my roller coaster adventure ride with lung cancer these seven years, and I hope for more! Oh yes I do!!

More than that, I hope for more research to extend the lives of many more people affected by lung cancer, because there are so many of us and we all want life and need hope. So if you know any lung cancer researchers, please thank them for the good work they are doing and encourage them to keep up the good work with diligence and urgency. So many of us are counting on them!

I’ve worked hard to keep doing light weights, stretching and walking through the Fall. My daily step count has fallen below my usual 9000-10,000, but I haven’t given up hope!

So grateful for friends, for so many delicious soups (and other yummy things!), and for so many calls and messages. This has really sustained me and helped keep me buoyed up.

I don’t talk about my faith a lot, and I would never want anyone to feel like I’m pushing Christianity on anyone. I want to be clear, please stop reading if you are feeling offended. My relationship with God means so much to me, and keeps me going. God is good all the time, and I am grateful for the love of God poured out through Jesus, and the ever-present comfort of the Holy Spirit. It’s the love of Jesus that motivates my advocacy, and any good I do is because of God working through me.

#hope

Bump in the Road

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Time for an update about my health and treatment …

The lung cancer pill that I take daily is working very well, for the most part. Most of the cancer has shrunk and stopped acting like cancer, which is what the pills are supposed to do. But, cancer cells are not always all identical. In my case, right now, most of the cancer is under control, but some of the cancer isn’t. Some is growing and causing problems, so we need to take action.

I’m very thankful for my great health care team and the new addition to my treatment plan. We will add five radiation treatments to zap those pesky spots. Adding on some radiation is best practices, often called “weeding the garden”. Radiation starts on Monday, five days in a row, then back to taking the same routine of pills. Just a little bump in the road.

I’m very thankful for supportive friends who are giving strength and love, praying and offering to do groceries and bring meals and muffins. I’m thankful that I’ve been walking about 10,000 steps a day, stretching and doing weights. There is so much to be thankful for, including beautiful Fall colours!

So, good news that the pill continues to work effectively against most of the cancer. Good news that I’m in good hands with a solid treatment plan. Great news that I’ve got support. This is just a bump in the road, and we are holding onto hope.