Entries by Nancy Torrison

I’m You.

Clinical Trials Blog, Post 6, Katherine Bensen.

It wasn’t the news I was hoping for this week. My phase 1 clinical trial (first in human, open label, dose escalation study of a new treatment – a human bispecific EGFR and cMet antibody in subjects with advanced non-small cell lung cancer) did not work for me. On April 16, I had a CT scan after starting the trial six weeks ago. My stage 4 lung cancer has increased; therefore, I will no longer be participating in the clinical trial. My doctor made it clear that my participation in the trial is more than helping humanity – it is about helping me, too.

There are two reasons why my oncologist would remove a patient from a clinical trial:

  1. The patient has a reaction to the treatment; or
  2. It is not helping reduce the cancer.

Currently, because of other people participating in clinical trials, I am fortunate to have another targeted therapy treatment to try – a combination of two drugs called Crizotinib and Tagrisso. This will be my eighth line of treatment since being diagnosed with lung cancer on December 31, 2014.

Research matters.  Clinical trials matter.

My oncologist and I will continue to look for another clinical trial. I remain hopeful for more time to allow research and new drugs to find a cure for lung cancer.

Thank you for reading my blog and being with me through this experience. I am so grateful for all the brave people who came before me and gave so much by participating in clinical trials.

Anyone with lungs can get lung cancer. I am you!

#Katiewins Living with Stage IV Non-Small Cell Lung Cancer EGFR Exon 19, Erbb2, T790M & MET ~ Diagnosed December 31, 2014.

Wish mom was here (a video, Katherine’s daughter)

Clinical Trials

Learning about Clinical Trials, by Naomi Fujioka, MD, Masonic Cancer Center, U of MN Dept. of Medicine

Clinical trials are a fundamental part of cancer care, leading to more knowledge about the cancers themselves, treatments, and/or side effects. They are often a culmination of decades of work in the lab and in animals, before being introduced to patients. For trials involving treatment, the treatment is “experimental” which means they are not approved by the FDA and not standard of care. Clinical trials come in different flavors, generally referred to as “phases.” The National Cancer Institute has a wonderful primer on clinical trials, accessible at https://www.cancer.gov/about-cancer/treatment/clinical-trials. Trials can run the spectrum from testing the safety of a drug that’s never been used in people (Phase 1), to testing an experimental treatment against a standard of care treatment (generally Phase 3) to see which one is better. Trials can potentially be an appropriate option at any stage of cancer treatment.
Patients: It’s really important for the doc to explain the purpose of the trial to you, the pros and cons, what’s known about the treatment, what is being asked of you, the potential risks, alternatives, and other pieces of information such as who will pay for the costs of the treatment and other care required during the study. These things are also written in a “consent form.” However, it’s important to be aware that a consent form doesn’t replace the doc explaining things well. It represents the way we document something called the “informed consent process.” It’s important for you to ask whatever questions you might have about a trial at any time. It’s also really important to understand that no one can force you to participate in a clinical trial, and you have the option of dropping out of a clinical trial for any reason at any time, without affecting your care or relationship with your providers. It’s voluntary. These principles and many others are strictly enforced by many parties, including the government, FDA, and institutional review boards at every institution, whose duty is to protect people participating in research.
Your doc should advocate for you and be thinking of clinical trials throughout the course of cancer treatment. Navigating and identifying clinical trials is a daunting task, but one place to start looking is clinicaltrials.gov. All clinical trials in the United States are required to be on this website, which is run by the National Institutes of Health. When I’m looking for a clinical trial, I usually start by entering in the condition – for example “lung cancer” and limiting the search to the U.S. I also like the map view, which allows me to see what trials are available in Minnesota or any other individual state. Sometimes it’s best to type in other information – for example “EGFR” or “ALK” or “lung adenocarcinoma.” Your doc is the best person to help you search efficiently. This will save you the time of parsing through the huge amount of information on clinicaltrials.gov. It’s also most useful to look for “active” trials, which are trials that are actually looking for patients. However, trials go through phases. It might say “active” on clinicaltrials.gov, but be temporarily on hold while some data analysis is going on, or some side effects are being reviewed, etc. So your doc, or the doc running the trial at your clinic, will have the information about whether the trial is actually looking for patients or not, and if not, when it might start again if it hasn’t been completed yet. Sometimes I’ll contact a doc running a trial, called an “investigator” to get more information, or sometimes I’ll contact docs around the country to see what trials he/she might have. Each clinical trial usually lists a primary contact.
Clinical trials have a lot of eligibility criteria such as who can or cannot be in the trial. A summary of the criteria is on clinicaltrials.gov. Your doc can help determine if you’re eligible in the beginning, but final eligibility is determined once you enroll in a trial.

I’m You.

Clinical Trial Blog, Post 5, Katherine Bensen.

So, this just happened. I woke up Saturday morning with a rash of pimple-like sores so dense and inflamed that my entire face looked like it had swollen to about three times its normal surface area. I didn’t even recognize myself in the mirror! To make matters worse, it hurt and it itched. And the more I itched, the more it hurt. The more it hurt, the more I itched. So, I spent the weekend trying to relieve my new side effect from this clinical trial by covering my face with lotions and suave – an attempt to relieve the itching, swelling and pain.

My best friend kept telling me to stop “trying to tough it out” and “please contact your doctor.” I am so glad I finally listened to her. My doctor prescribed Prednisone immediately and within a couple of hours I was feeling better. My face isn’t quite back to normal yet, and it is completely exfoliating, like a snake. Unfortunately, this is something I have experienced before from previous cancer treatment drugs. And, it really makes my skin look aged – I look about 10 years older right now. But I will take the aged appearance ANY DAY, as long as I can stay alive. I’m even happy to share these before and after pictures of one of the many possible side effects from cancer treatments because today, I am alive because of the new treatments discovered through research and clinical trials.

My experiences and the side effects from this clinical trial are being shared with the pharmaceutical company that produced the drug as well. This allows others to learn from my experience and work to improve the treatment.

I’m hoping this side effect (or something worse) doesn’t happen again after my next treatment, but if it does, I will call my doctor sooner! A side note: as much as I don’t like taking steroids, they did make me feel good enough to go to the gym today with my son, Henry. Being with family and being able to go to the gym makes most anyone feel better!

Research matters. Clinical trials matter. I’m you.

#Katiewins Living with Stage IV Non-Small Cell Lung Cancer EGFR Exon 19, Erbb2, T790M & MET ~ Diagnosed December 31, 2014.

I’m You.

What is a clinical trial and why is it important? by Nancy Torrison, executive director of ABOHLF

Clinical trials are experiments or observations done in clinical research. Such prospective biomedical or behavioral research studies on human participants are designed to answer specific questions about biomedical or behavioral interventions, including new treatments (such as novel vaccines, drugs, dietary choices, dietary supplements, and medical devices) and known interventions that warrant further study and comparison. Clinical trials generate data on safety and efficacy. They are conducted only after they have received health authority/ethics committee approval in the country where approval of the therapy is sought. These authorities are responsible for vetting the risk/benefit ratio of the trial – their approval does not mean that the therapy is ‘safe’ or effective, only that the trial may be conducted.

Depending on product type and development stage, investigators initially enroll volunteers or patients into small pilot studies, and subsequently conduct progressively larger scale comparative studies. Clinical trials can vary in size and cost, and they can involve a single research center or multiple centers, in one country or in multiple countries. Clinical study design aims to ensure scientific validity and reproducible results.

Costs for clinical trials can range into the billions of dollars per approved drug. The sponsor may be a governmental organization or a pharmaceutical, biotechnology or medical device company. Certain functions necessary to the trial, such as monitoring and lab work, may be managed by an outsourced partner, such as a contract research organization or a central laboratory.

There are two goals to testing medical treatments: to learn whether they work well enough, called “efficacy” or “effectiveness”; and to learn whether they are safe enough, called “safety”. Neither is an absolute criterion; both safety and efficacy are evaluated relative to how the treatment is intended to be used, what other treatments are available, and the severity of the disease or condition. The benefits must outweigh the risks. For example, many drugs to treat cancer have severe side effects that would not be acceptable for an over-the-counter pain medication, yet the cancer drugs have been approved since they are used under a physician’s care and are used for a life-threatening condition.

Research matters. Clinical trials matter. Learn more or find a trial near you.

Posted 3/21/2019

I’m You.

Clinical Trials, post #4: Katherine Bensen.

I was emotionally exhausted today and noticed something very different about my current cancer treatment appointments. For some reason I could not bring myself to turn on the TV to pass the time during the all-day treatment. I sat in silence with my thoughts and I was completely content in the quiet hospital room. As usual, I had my books, notepad, phone, and laptop to pass the time, however I did not use any of them during these infusions. I couldn’t concentrate on reading a book. Reading or watching a funny program usually makes me happy, so you would think, why not? Aren’t these perfect activities to pass the time since I was just sitting there all day? I could have done all these things, but emotionally could not find the energy. The significance of my current treatment is so great. I could only focus on one thing, the clinical trial. This clinical trial matters. This research matters. Anyone with lungs can get lung cancer, with or without risk factors. I am you.

My hospital room today didn’t have any windows, but it didn’t matter to me. I was just so happy to be there doing the clinical trial. I’m in a bed all day attached to an IV, getting out of bed only to use the restroom. The entire day, I just lay there. I have a nurse assigned to me all day following the protocol procedures such as taking blood samples, checking vitals every half hour, observing me, etc.  Either my mom, dad or sister have been present by my side every minute to chat or just sit in silence.

As I am writing, I have tears of joy and gratitude for all the wonderful people in my life. My family, friends, community, doctors, nurses, friends of friends, my husband John and our children Henry, Anne, Millie and Sadie. Everyone gives me so much strength! I am amazed at how much love people have and give to others. I wish I could be there for all of you the way you are there for me with all of your sweet words of encouragement. Thank you all for your support.

I am reminded finally of all the others that came before me and participated in clinical trials. The research data that came from their participation is greatly needed and being used today to work toward a cure. A cure for me. A cure for you. I am you.

#Katiewins Living with Stage IV Non Small Cell Lung Cancer EGFR Exon 19, Erbb2, T790M & MET ~ Diagnosed December 31, 2014.

March 20, 2019

I’m You.

Clinical Trials, post #3: Katherine Bensen.

Curled up in my youngest daughter Sadie’s bed last night, snuggling her up for sleep and soaking in all her love! I told her that I would miss her while I’m at treatment and decided to be real and shared that I didn’t want to go.

In her sweet way, she told me to go to bed and get some sleep. “In the morning you’ll wake up and go. Afterwards, we will all meet up at Carleton College and you’ll see Henry, Anne, Millie, Dad and me. Then it will be summer.” I laughed and said, “Just like that, jumping ahead to summer?” “Yup,” was her quick reply.

Sadie is 13 years old and she grounded me once again. One minute and one day at a time, that’s how it works. Look at how much time has passed and I’m still alive!

Today is my 3rd infusion of the clinical trial. I’m overwhelmed with how grateful I am that I made it through the first two infusions. I recently learned that only one of two people make it past the first day.  Side effects, such as a severe allergic reaction, can prevent some patients from continuing the treatment.  I checked in at 8:00 am today and I have my own room with a bed and warm blankets. The prep takes two hours each time I come for an infusion. This morning, I felt disgusted as I watched my blood coagulating as they took samples for the study. Normally my blood flows easily, however today we needed to rotate my arm to the side, up and down. Anyone reading this blog will be able to imagine for themselves the discomfort of having to move while having a needle stabbing you. Imagine a needle attached to a small tube stuck through your skin right on top of the bony part of your wrist. Yuck, but the irony is, I feel grateful in this moment. This discomfort may save my life, and it will contribute to science to help others later.

It’s 10:37am and my infusion just started. The protocol today is a five-hour drip. Once again, it feels ironic that I am looking forward to heading home tonight during rush hour with all of you.

Research Matters. I’ll never forget a conversation I had with former Vice President Joe Biden. His son Beau Biden had brain cancer. He told me there was another girl that had the same cancer as his son, and they were both given the same treatment. Sadly, his son passed away, but she lived. You live. I’m you. He told me to keep going!

Thank you everyone for all your sweet and profound words of encouragement by phone, text, letters and on social media on my page and A Breath of Hope’s pages. I read and love every single message and cherish every one of you.

Research and clinical trials matter. I’m so happy I can contribute to the knowledge that may save others’ lives.

She lived. You live. I’m You. Anyone with lungs can get lung cancer.

#Katiewins Living with Stage IV Non-Small Cell Lung Cancer EGFR Exon 19, Erbb2, T790M & MET ~ Diagnosed December 31, 2014.

 

I’m You.

Clinical Trials, post #2: Katherine Bensen.

Today at the hospital, a 27-year-old girl with lung cancer is lying in her bed just a few floors above me. She will take her last breath in the next couple of days. She’s been on my mind all day as my own cancer mid-infusion drug slowly drips. It’s not fair. She’s so young…so much more life to live. Unfortunately, the drugs just are not working for her. She only had a year to say goodbye. She needed more time, time for researchers to find better treatments or a cure for lung cancer. Research matters. It is the hope of hundreds of thousands of people fighting this disease right now. She could be you. She might be me. Maybe I’m you. If you have lungs, you can get lung cancer.

Lung Cancer is the world’s #1 cancer killer. It kills more men and women than breast, colon and prostate cancers combined, yet it receives less research funding per cancer death than many other cancers.

433 people will die today from lung cancer. That’s a jumbo jet going down every single day in the USA! Why aren’t we more alarmed?

I’m reminded again of how grateful I am for the gifts others before me have given by enrolling in clinical trials that provide research that leads to new treatments and extended lives. I’m still alive today, four years longer than expected because of those brave souls!

I was miraculously given four years to make more memories with my husband and children, family and friends. It’ll never be enough, but we are grateful for our time and hope for more.

Research matters. The five-year survival rate for lung cancer is less than 18%. As I approach my five-year anniversary December 31st, it feels like I am watching a glass sand timer slowly emptying its sand.

A fellow stage 4 lung cancer survivor and friend messaged me today. We are enrolled in the same clinical trial. I’m so saddened to learn that she will be taken out of the trial today because her cancer has progressed, and the treatment didn’t work. She gave herself to research and to those who come after her. I’m so proud to know her and continue to believe that we both have more options to give us more time!

Research matters. We need to invest in it and encourage the powers that be to make lung cancer a high priority research area. 433 people dying each day – that should be all the incentive anyone needs.

This day has been long and hard. I’m hopeful and positive for whatever outcome my participation in this trial will provide for others and I believe it will buy me more precious time as well.

Clinical trials matter. I’m you.

#Katiewins Living with Stage 4 Non-Small Cell Lung Cancer EGFR Exon 19, Erbb2, T790M & Met ~ Diagnosed December 31, 2014.

Volunteer of the Month: Stacy Strojny

StacStacy Strojnyy is the lead volunteer for the A Breath of Hope Lung Run/Walk program. Her volunteerism began in 2014 after participating in the 2013 Twin Cities 5k. Since then she has helped launch ABOHLF’s first-ever Chicago 5k, Duluth 5k and Florida 5k. You will find Stacy in the registration tent graciously managing 35+ volunteers with a bright smile on her face. Stacy is the first to offer a helping hand and pours her heart and soul into the Lung Run/Walk events – and it shows! Her professionalism and attention to detail make Lung Run/Walk events run smoothly.

Thank you, Stacy, for your commitment and passion! You are greatly appreciated.

From Stacy: “I feel so blessed to be a part of ABOHLF! It has helped me keep my mother’s memory alive and to continue her legacy of kindness, compassion, and helping others in need. I could have never imagined how much this organization/staff, and the many people I have met along the way, could have such a positive impact on me! I will forever have a hole in my heart, missing my mom, but having the privilege to be surrounded by all of these wonderful people has somehow filled a void that I never thought was possible. It is amazing how I still feel very connected to my mom! For that I am truly blessed and grateful to everyone who works and volunteers for ABOHLF! Thank you for all the work that you do and for allowing me this opportunity to honor my mom!!”

 

My/our mother Margaret Asenbrenner was diagnosed with stage 4 lung cancer in February, 2010.  She was a happy and healthy wife and mother of eight children.  The diagnosis took us all by surprise as lung cancer was not something my siblings and I thought much about and never envisioned our mother as a lung cancer risk as she was a non smoker. She lived seven months with the disease until she passed away in September, 2010.
Our mother Margaret was an amazing lady and inspiration to all of us kids.  She spent her life giving of her time and love to our family and many others.  We learned about A Breath of Hope Lung Foundation from our good friend Gary Brausen who had been diagnosed with lung cancer as well.  Gary shared with my husband Bill and me the mission of A Breath of Hope Lung Foundation and the amazing work the organization is doing.  I feel the model is very compelling in that it focuses on three key areas: lung cancer awareness, detection and treatments.  I am particularly energized about the recently announced research fellowships.
My siblings and I had been looking for some way to get involved in the fight against lung cancer as a way to “do something” about the devastating disease and honor our beloved mother with the same spirit of giving and love that she exemplified in her life.  We have participated in A Breath of Hope Run/Walk for the last two years.  This year we had 20 family and friends participate on “Team Margaret”.
As a family, we feel we lost our mother way too early in life due to lung cancer.  She had so much more life in her left to live. Our hope in getting involved with A Breath of Hope Lung Foundation is to ensure that other families don’t lose their loved ones to lung cancer before their time. This is an avoidable diagnosis.