When Terri Conneran was first diagnosed with lung cancer, she focused on kicking cancer’s ass.
That was before discovering she had the KRAS (pronounced KAY-ras) biomarker.
Now, Terri wants to kick cancer’s KRAS.
It began with having trouble breathing
It all started in 2017, when she began having trouble breathing. Lung cancer was not on her radar.
“I had asthma for a number of years,” she says. A difficult summer turned into a challenging autumn, then winter—with no relief. “We blamed allergies and changed medications, but nothing really seemed to help. It became harder and harder to breathe. By Christmas, I just felt lousy. My husband finally said, ‘Enough is enough.’ So, I went to the doctor expecting to get an antibiotic for an upper respiratory or sinus infection.”
However, when the doctor heard fluid in Terri’s lungs, she ordered imaging and discovered a mass. A biopsy ultimately confirmed she had non-small cell lung cancer. The very next morning, Terri experienced what felt like a heart attack. She reasoned within herself and attributed the classic warning signs as stress brought on by the shock of her cancer diagnosis.
“What happened was, after the biopsy, my lung had filled up with fluid and collapsed,” she explains.
They kept Terri in the hospital to drain the fluid around her lung and stage her cancer. She was initially diagnosed at Stage III. Her care team planned to start her on chemotherapy, then surgically remove one lobe of her left lung.
No actionable biomarker
“After my diagnosis, the only thing my doctor showed me in my report was PDL1. Because I had become involved with the lung cancer community, lung cancer support group and on the LiveLung board, I was aware and knew enough to ask about my biomarkers.”
However, at the time, her oncologist told Terri she had no “actionable” biomarker.
After completing her treatment, doctors said she had No Evidence of Disease(NED). She decided to seek a second opinion.
Seeking a second opinion
“At my second opinion visit, I made a comment about not having a mutation. But that doctor said, ‘You do have a mutation. You have KRAS.’”
Immediately, Terri started researching about KRAS and tried reaching out to the KRAS community.
“I went looking for my KRAS people -- the same way there are EGFR and ALK communities. I wondered: Where are my people?”
Creating a KRAS group from scratch
But she soon discovered that -- even though KRAS is the most common biomarker in lung cancer -- there was no formal KRAS community. That is when she decided to create KRAS Kickers, where researchers, patients, and caregivers can come together.
“We bring researchers and patients together to share information and hope. As patients, we need that. We are bringing together these groups to share hope, research, and knowledge.”
KRAS Kickers has an active Facebook group and is expanding its website. In its first few months of operation, KRAS Kickers came under LiveLung’s 501(c)(3) nonprofit umbrella. However, the organization is growing so quickly that KRAS Kickers has now applied for its own nonprofit status.
“The KRAS community is global," says Terri. "We have patients from around the world who are desperate to get information about what’s going on in KRAS and what people in different parts of the world are dealing with and what a certain treatment may or may not do for them.”
Terri’s vision is to provide current, relevant information about the KRAS research pipeline to patients. She also wants to encourage researchers and help connect them with patients.
“As we get closer to the reality of targeted therapies for KRAS, the need to come together and share knowledge becomes even greater,” she says.
Learn about KRAS
The KRAS biomarker accounts for approximately 25 percent of lung cancers.1According to the National Cancer Institute, KRAS is a “gene that makes a protein that is involved in cell signaling pathways that control cell growth, cell maturation, and cell death. The natural, unchanged form of the gene is called wild-type KRAS. Mutated (changed) forms of the KRAS gene have been found in some types of cancer, including non-small cell lung cancer, colorectal cancer, and pancreatic cancer.”2
“Every human being has KRAS in their body,” says Terri. “They refer to that as wild type KRAS, which is healthy, good KRAS. My KRAS stopped going on and off and it just got stuck in the on position.
“One study I saw said KRAS was responsible for one in seven cancers -- period. They realized that KRAS is the primary cause of three of the four deadliest cancers: lung, colorectal, and pancreatic. And KRAS is the most common type of mutation in lung cancer.
Dawn of hope
Although discovered decades ago, KRAS was considered undruggable for 40 years. Now, however, we are on the brink of change. Drugs targeting KRAS are currently showing promise in clinical trials.
Scientific progress takes time, though, just as with other cancer biomarkers that now have an array of therapeutic options. Finally, hope is on the horizon and researchers are making progress; but there is no magic bullet for KRAS patients.
“If you’re going to have KRAS, now is the time to have it, because now there is hope,” says Terri. “After 40 years of being considered undruggable, they kept looking because this is a big problem they want to solve. Finally, there was a huge breakthrough just a few years ago.
“Now, within KRAS,” says Terri, “there are different subtypes. I’m not a scientist but this is the way I understand it. I think of them as neighbors, because it’s like different strands...different numbers -- like a neighborhood address. There’s KRAS 12A, G12C, G12D. Mine happens to be KRAS G12D. It just means where it is and what the composition is.”
It is important to understand that targeted therapy for one subtype of KRAS may not benefit patients with a different KRAS subtype. The KRAS G12C is the most common KRAS mutation in lung cancer, accounting for about 13 percent of non-small cell lung cancer cases.1 Researchers estimate 25,000 lung cancer patients are diagnosed with the KRAS G12C biomarker in the US each year.2
Cracking the KRAS code
A couple of KRAS targeted therapies are showing promise in clinical trials. One -- sotorasib -- was just granted FDA “breakthrough therapy designation” for KRAS G12C patients with advanced or metastatic lung cancer who were treated previously by a systemic therapy.
“We are on the cusp of cracking the KRAS code,” says Terri. “In the meantime, there are other companies all over the world working on this. Many of these companies are collaborating with others on this because they realize this isn’t just a one and done thing. You need to be able to attack this KRAS from different angles.”
Comprehensive biomarker testing
One of the current challenges facing the broader lung cancer community is the lack of biomarker testing. Potentially, the KRAS community may be impacted even more significantly by the lack of biomarker testing because doctors may not be aware of the progress being made in KRAS clinical trials. Patients who do not have comprehensive biomarker testing cannot benefit from a KRAS trial or from potential targeted therapy -- if FDA approved.
“Doctors can’t present the best choice for patients if they don’t have the most current information. There is so much going on within the lung cancer research field that it truly takes a specialist to stay up to date with all the emerging treatment options. In this day of tele-med, it is easier than ever to get a second opinion from a doctor at a research hospital.”
Kicking cancer's KRAS
Connected patients are empowered patients. Terri, who had been an engaged member of the LiveLung lung cancer group in Charlotte, NC, experienced the benefits of connecting with others in her community, as well as learning from expert speakers at meetings.
“Getting involved with your own type of people and your own type of community doesn’t mean you don’t have friends in other groups.”
But patients with KRAS are connected in a special way, as are patients within other biomarker groups.
“It’s more empowering. These are my family of people. And we can just relate in a different way.
James Hiter, Jr., a stage IV lung cancer patient with the KRAS biomarker joined the KRAS Kickers to connect with others and share knowledge.
“When I was first diagnosed,” says James, “there wasn’t much information available about KRAS. Then in 2018, I met Jackie Keast at the LUNGevity Survivorship Conference. While other mutations had their own breakouts, Jackie and I sat together and talked. We continued to be connected. As much as I enjoyed this connection, I was envious of the comradery of the other mutation-centered groups. Those groups seemed to have far more to discuss and celebrate. The advancements in EGFR and ALK were phenomenal and exciting. They had real success stories.
“Recently, all the ingredients have come together to create something special,” says James, “Advances in KRAS targeted therapies, the need for connection, and Terri’s leadership and vision. With the advent of KRAS Kickers, I feel we have a group where there is real comradery, cutting-edge information, and hope. Now I’m a part of a global KRAS community. Medical advances continue to give us even more hope for the future. Experiencing that hope with others in similar situations is very meaningful.”
“Our tagline says at all: Kick cancer’s KRAS,” says Terri.
From LungCancer.net - February 28, 2021