Back in 2011, Hemet resident Linda Collins was in the battle of her life. She was diagnosed with ER-Positive breast cancer, a form of cancer that feeds off estrogen. After 16 weeks of chemotherapy, surgery and 28 weeks of radiation, Linda was told she was cancer-free.
“Right after my five-year mark, in the spring of 2017, I went to see my oncologist at Kaiser Permanente. I had been having some bad pain in my back. It was getting steadily worse,” Linda said. “He did all my bloodwork and everything came back fine. I had a mammogram and nothing was showing up. I insisted I had this pain and I didn’t feel comfortable just ignoring it.”
Linda’s oncologist agreed to send her for a CT scan, which then led to a positron emission tomography (PET) scan. Something unusual showed up, but it was in her chest area, not in her breast.
“I had a pulmonary biopsy. She [technician] told me I had breast cancer but it had traveled to my nodes in my chest walls,” Linda said. “So, I went back to my oncologist at Kaiser after the pulmonary to see what the next step was.” Assuming the cancer was the same form Linda had before, they prescribed a chemo treatment plan and said there wasn’t much else they could do.
Linda’s oldest daughter Emily Collins, of Idyllwild, immediately jumped into action to help her mother.
“My entire life growing up my parents were always my advocate. As adult children, we hit a certain age where we can see when they aren’t being the best advocate for themselves and it’s our loving responsibility to speak up for them,” Emily said. “The oncologist said there was nothing they could do and that she would have six months left. I was flabbergasted and thought to myself that this isn’t the proper care for someone in this position.”
After some persuasion from her three children and the advice of Linda’s niece, who is a nurse practitioner, the City of Hope was brought into the picture. Hoping they could offer some other option or treatment, they pushed Kaiser for approval.
“My daughter Emily ... she was very persistent with Kaiser to get approval to the City of Hope,” Linda said. “My outlook looked pretty grim.”
Linda was put in contact with City of Hope oncologist and breast cancer expert Yuan Yuan, M.D., Ph.D. who decided to retest all the samples, concluding that Linda now had triple-negative breast cancer, a completely different kind of cancer from the ER-Positive that she fought before.
Unfortunately, this type of cancer is one of the most difficult to treat because it lacks the necessary receptors, making common treatments essentially ineffective.
Linda said, “She [Yuan] was just incredible. She got on the phone with Kaiser and got everything sent to the City of Hope very quickly. She retested all the samples and found out that I no longer had the form of breast cancer I had before. At Kaiser, I was ready to enter a program that wouldn’t have been helpful. Had I not contacted City of Hope, who knows what would’ve happened.”
Luckily, Linda was able to qualify for a clinical trial using Keytruda, a drug approved by the FDA and used to fight certain cancers, in combination with another drug called GTx-024 that helped stimulate her blood count and blocked the cancer from being able to grow.
“In the spring of 2019 I was almost done with the trial when I got very sick,” Linda said. “The drug had shut down my adrenal system. It happened slowly over a few months, and finally, every joint in my body hurt. I could barely move. Once that was resolved in May 2019, I was able to go back to work. I’ve felt really good ever since they’ve had me on hydrocortisone and other medication to help with my adrenal system. I’ve had pretty much a normal life.”
As of November 2019, Linda finished the trial. Every three weeks she makes the drive to the City of Hope in Duarte, California to get tested and every fourth visit she receives a PET scan to check the size of the nodes.
Emily has gone with Linda to almost every appointment, taking her now one-year-old daughter.
“We make a day out of it,” Emily said. “We usually leave early in the morning, grab a coffee and go to the appointment. We have lunch before her infusion and then make the drive back together. The doctor has been able to see my baby grow and now is a year old, so that’s fun. We try to make some normalcy out of the entire thing.”
“I’ve been approved for four treatments so far to continue these drugs,” Linda said. “My doctor wants me to continue as long as I don’t have an adverse reaction to the drugs. I’m hopeful.”
After a year and a half, Linda said that the nodes have decreased in size and become non-active.
“They can’t qualify her as being in complete remission because it’s still a trial, but any tumors she did have shrunk to almost nothing,” Emily explained. “It’s at a standstill. I know that her doctors understand what a miracle she is and how much she is helping others.”
Out of all the people fighting, Linda was the first big success story saying, “I’m only one in about three people that were a success story from the trial.”
“I know there was another woman who had some progress but not as much as my mom,” Emily added.
The moral of this success story is to be an advocate, help others where you can and don’t be afraid to try something new.
“I think a second opinion is very important,” Linda said. “I’d tell people not to be afraid of clinical trials. They monitor you so closely and you get the best of care. I feel so humbled to have had the opportunity to go there.”
“I hope this will help people,” Emily said. “Anything to get this story out to show people that there is always something somewhere that can help you. What would have happened if I wouldn’t have said anything and just let my mom take the advice of the oncologist at Kaiser? Be an advocate and say something. I wish we would have had that back then.”
“When you drive into the City of Hope there is a sign that says, ‘There’s always hope,’” Linda said at the end of the phone interview. “And there is ... there really is.”