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I’m You.

#KatieWins

Katherine Bensen’s commitment to improved lung cancer outcomes continues to inspire us and bring hope.

Our thanks to KSTP TV for bringing attention to Katherine’s story, and for highlighting the need for greater participation in clinical trials to improve treatments.

Recent Article: 5 EYEWITNESS NEWS followed up with a local woman who is committed to helping herself and others. (The link to the interview is at the bottom of this article.)

Katherine Bensen is back at Mayo Clinic. Bensen was diagnosed with non-smoking stage four lung cancer in 2014.

RELATED: Targeted therapy means lung cancer doesn’t have to be a death sentence

“My job for the last four years has been staying alive and having good health, good quality of life, going to doctor’s appointments, doing the research, spreading awareness about lung cancer and just being here for my family,” said Bensen.

In 2016, KSTP reported on a unique targeted therapy she received at Mayo Clinic but her cancer kept growing.

“The cancer is really smart,” said Bensen. “And so I’ve exhausted four different targeted-therapy drugs. And the cancer basically figures out that it’s getting blocked and then develops another mutation.”

But here’s what’s great about clinical trials each time Bensen tried a therapy and it didn’t work, something new popped up that wasn’t available before. In April, she started another one.

“We clearly need more people,” said Bensen’s Mayo Clinic Oncologist, Dr. Julian Molina. “Now we have an abundance of new medications in cancer treatment, and what we are lacking is more patients to participate in clinical trials.”

Dr. Molina says clinical trials at Mayo Clinic and other research hospitals are important.

“The message is [to] consider clinical trials for two reasons,” said Molina. “One is because they have a good chance of benefiting you as a patient. Some of these medications are very good and they have a good potential. And number two, you have the chance of helping others.”

Bensen is dedicated to the cause. She and her father, former Minnesota Congressman Rick Nolan, raise money for research. And she understands cancer impacts the whole family. She’s a wife and a mom; she’s been honest with her kids and they’ve learned a lot.

“You can get through anything,” said her son, Henry. “You know we have bad days, but I think about her and what she goes through and it really gets me through it, it gets me through anything.”

“It’s just about breaking it down and taking it day by day I think,” said her daughter, Anne. “Don’t let the big obstacle facing you get in the way of doing everyday life.”

Fast forward a month and there’s disappointing news. Bensen has learned the latest therapy isn’t working, either. But thanks to research and clinical trials, she’s now on another new treatment– her eighth.

According to Bensen, clinical trials have bought her time and given her hope for a cure.

“If other people had not done these clinical trials I would not be here today,” said Bensen. “And Dr. Molina said from day one we are going to treat it like a pair of tires. And when these ones wear out we’re going to get another set. I am definitely living proof that research matters and clinical trials matter.”

Katherine is beating the odds thanks to clinical trials. According to Mayo Clinic, the five-year survival rate for people diagnosed with late-stage lung cancer that has spread (or metastasized) to other areas of the body is 5%. For more, read the Mayo Clinic’s Cancer survival rate: What it means for your prognosis. 

Video of interview: https://kstp.com/medical/local-woman-is-living-proof-clinical-trials-keep-people-alive-more-patients-needed-to-participate/5377639/?cat=1

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

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Clinical Trials Matter.

The Importance and Challenges of Clinical Trial Participation, by Heather Kehn, RN, MPH

Importance of Clinical Trials

Clinical trials are the key to making progress against cancer.  As a result of past clinical trials, people today are living longer lives from newly discovered cancer treatments that are the results of past clinical trials. Clinical trials also help find new ways to prevent cancer and improve the quality of life for people during and after treatment. When patients and their families take part in a trial, they add to the knowledge about cancer and help improve cancer care for future patients.1

The National Comprehensive Cancer Network (NCCN) guidelines state the best management for any patient with cancer is in a clinical trial.  The NCCN goes on to explain that many cancer tests and treatments widely used today, exist because of clinical trials. However, clinical trials can only be done if people have access to the research studies and are willing to join as a particpant.2

Challenges of Clinical Trials

Misconceptions can be a common challenge when it comes to enrolling patients onto a clinical trial.  A common misconception is that all clinical trials involve a placebo.  Actually, placebos are almost never used alone in cancer treatment trials. In some cases, a study may compare standard treatment plus a new treatment, to standard treatment plus a placebo.  Patients will be told if the study uses a placebo during the informed consent process.3

Also, patients may think that there are only cancer treatment clinical trials.  When really, there are many clinical trials looking at how to help patients control or prevent the symptoms of their cancer or the side effects of cancer treatment.4

Institutional barriers also exist.  For instance, 55% of patients seeking cancer care will not have a clinical trial available for their condition at the location where they are receiving care.  Another 17% will not meet the study’s eligibility requirements, and many eligible patients will not be asked by their provider to enroll.5

Taking Action, Together

There is a one-stop-shop to help patients, their family and the community understand clinical trial options and the process of enrolling onto a clinical trial.  The National Cancer Institute (NCI) developed AccrualNet™ to provide a growing, searchable database of hundreds of journal articles with easy-to-read summaries, helpful tools, sample materials, and training resources that can also be used by clinic and research staff.

A Breath of Hope is proud of its strategic partnerships in the lung cancer field and would like to thank Heath Kehn for this contribution to our Clinical Trial Blog Series.

Heather Kehn is a Program Manager with Metro-Minnesota Community Oncology Research Consortium (MMCORC).  To learn more, visit www.mmcorc.org.

Sources: 1. Clinical Trials Information. National Cancer Institute.  Accessed April 20, 2019 at https://www.cancer.gov/about-cancer/treatment/clinical-trials/what-are-trials.
  1. National Comprehensive Cancer Network (NCCN). Accessed on April 11, 2019 at https://www.nccn.org/patients/resources/clinical_trials/default.aspx. 3. Taking Part in Cancer Treatment Research Studies. National Cancer Institute. 2011. 4. Looking for Answers Through Cancer Research Know Your Options. Metro-Minnesota Community Oncology Research Consortium (MMCORC). 2015. 5. Overcoming Barriers to Patient Enrollment in Therapeutic Clinical Trials for Cancer. Cancer Action Network, American Cancer Society. 2018.
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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)

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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.
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