I’m You.
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.
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.
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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.
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:
- The patient has a reaction to the treatment; or
- 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.