Flori Hendron is an artist and designer who was originally diagnosed with breast cancer in 1996, and metastatic breast cancer (MBC) in 2007. Flori developed an art program at Cedars-Sinai Hospital through their Survivorship Program, Expressions of Hope & Healing©, as a safe space for cancer survivors to reflect on their journey and connect with healing through the art expression process. Flori’s personal goals are clear: to make clinical trials less restrictive for the MBC community, especially for people living with active brain metastasis and/or leptomeningeal disease.
So I was originally diagnosed in 1996 – in the olden days. I was 38 years old. Then I was diagnosed Stage 4 in April of 2007. And then I switched doctors at the end of the year. And I had been pushing for a brain scan on deaf ears. So in February of 2008, with my new doctor, I was restaged and they found a single brain met.
Gamma Knife Procedure
So I was treated for that brain met, with a gamma knife procedure with the halo. I still have little dents from where it was screwed in my head. And looking back, it was one of the easiest procedures, because it was successful. So I went in at 7, I was home in my bed at 11 in the morning. And then, quiet in the brain mets until May of 2019.
So I was very fortunate in 2008, that that single gamma worked, and worked so well. Meanwhile, I was put on all the anti-HER2 therapies during that time. So as they became available, I added them in. It was not a typical way to go, but I was at a time in my life where I was focused on quality – quality of life.
So I was very fortunate. And then really asymptomatic for a lot of years, except for side effects from treatments. And then in May of 2019, like April/May, I started having symptoms. And my symptoms were random numbness on my right side. My right groin was feeling numb, my right leg. And I didn’t know what was going on. I started thinking maybe I had shingles cause I was itchy – cause it was all nerve-triggered.
So I went and saw my oncologist, who, I mean, I was still under her care all these years and she sent me for brain MRI, cervical MRI, thoracic lumbar – so my whole spine. And what came back were more brain mets and a spinal cord met up high at C2. So in my spinal cord, I had a tumor, probably the reason for all the numbness.
Surviving Beyond the Statistics
Flori was diagnosed with brain metastasis in February 2008.
It was the first time I asked for my prognosis. So, I felt surprised cause I already had metastatic cancer and brain mets. So now I have leptomeningeal disease, central nervous system disease. And I felt like – and then my prognosis, which my oncologist was so reluctant to give, but I really said like, I just need to know what is going to happen to me.
So she gave me about six months. She said 3 to 12, probably 6. So I took that in – wasn’t easy. And my kids and I kind of went through it together – they’re grown kids. And basically I got my ducks in a row, so I gave away my purses and some of my best jewelry to my daughter, and got my affairs in order.
And in the meantime, I was looking for clinical trials. So my oncologist only had one trial to send me to, which was for HER2+ brain mets and leptomeningeal disease. And it was a trial at City of Hope and it required a shunt, or a port, in my head. So, my kids were still in town. We went together.
I met with the trial doctor, filled out all the forms. I did not want to do the trial. I did not want a shunt in my head. I felt I’d been through enough. But, now there were my kids with big brown eyes just wanting me to be alive. So, I signed the forms.
Then, about a week later, I was told I was not a candidate according to the trial gurus. So I can’t say that I was unhappy, but I was surprised. Because it was literally the only trial I could find where the criteria included active brain mets, active leptomeningeal, et cetera.
Hope of Clinical Trials
I really see a clinical trial as an opportunity. I don’t see it as last-ditch, which is why I’ve been on them, and I’ve been on one in the past. What we know, or what we call standard of care, like your regular chemos and stuff that’s FDA approved – that is always available to us. And those drugs will always be there waiting.
Clinical trials – they may not always be available. They close, they finish enrollment. And what’s so important about the opportunity of trying a phase one clinical, is you might actually benefit from the drug. And you never know when you’re going to be on a trial with a breakaway drug. So yes, not a lot is known, but you are not a guinea pig. They know a lot about how that drug behaves before they enroll patients.
So they don’t enroll patients and then everybody dies. They enroll patients to do gentle dose escalations to find our safe dose. So you’re really more a partner in cutting edge science. And the care you receive on a clinical trial can be superior to your normal care because there are eyes on you all the time.
So think about every drug you’ve ever taken, Tylenol, Advil – just anything – aspirin, cold medicines. Every single drug in the drug store began in a clinical trial.
Finding a Clinical Trial
So there’s a lot of ways to find a trial. I’ve always found them myself, but not cause I have a secret trick. It’s straightforward, there are websites. Our website has a search engine. You can read tons on social media – in Facebook groups, on Twitter. Reading reports that come out of the big cancer conferences, like ASCO or San Antonio, or any of the international conferences. Because when there is a promising trial that’s working – that word spreads. The drug companies, they put it out there because it looks good to their shareholders. And more importantly, patients. We tell patients. So the patient network is amazing.
The trial I found, the first one I was on, called ZW25, I actually heard of through an online friend who lived in Canada and her doctor knew of this trial because it was a Canadian company. And he was sending all of his HER2+ patients to enroll in the trial. So she told me about it. And during that time period, I had decided I wanted a fresh eyes consult on my case.
Which is not at all an insult to our doctors. My doctor was super excited about it for me. And I went up to Stanford and I saw Dr. Mark Pegram, who’s one of the HER2 gurus. He talked to me about my case and then also two trials that he really liked. One of them was a ZW25. One of them was DS-8201. He told me that I’d be lucky to get on either of them and I should apply for both.
ZW25, also known as zanidatamab, is not approved for breast cancer patients with brain metastasis, but it is currently being investigated in clinical trials in the US and China for patients with HER2+ breast cancer. Patients with treated and/or stable brain metastasis are eligible to participate.
Enhertu, also known as DS-8201 or trastuzumab deruxtecan, was approved by the U.S. FDA for the treatment of patients with metastatic HER2+ breast cancer who have received two or more prior anti-HER2-based regimens in the metastatic setting. Enhertu is currently being investigated in several clinical trials globally across all continents for patients with HER2+ breast cancer and patients treated and/or stable brain metastasis are eligible to participate. There are even Enhertu clinical trials that require patients to have either brain metastasis or leptomeningeal disease.
Self Advocating for a Clinical Trial
So fast forward to 2019 and I’m told by City of Hope I’m not a candidate for the one trial I could find. So I wound up, I mean, I spent hours online searching. And this drug DS-8201. I’d been following it for a long time. It’s also FDA approved now and you probably know it by Enhertu.
So Enhertu, I knew that they were having incredible results. And I also knew the oncologist who was running most of the trials at UCLA. I mean, I knew of her. I had seen her also for a second opinion, a few years prior.
So I shot her an email and I just said, I’m in dire straits, here’s my little brief update. Do you have anything I would qualify for? And she emailed me right back. “I’m leaving the country, I have a 7:00 AM appointment tomorrow morning open. Can you come in? We can discuss.”
So even though I’m not a morning person, I definitely got there. And she brought up this trial that they were just opening. DS-8201, also known as Enhertu, with nivolumab. So that’s an immunotherapy drug for PD-L1, PD1, which I’m not, but anyway. I was mostly wanting that DS drug. And reading the inclusions and exclusions, I definitely did not fit the mold, but she really advocated for me. She had me rescanned and restaged from head to toe and try to find a way and get permission and get exceptions to get me into that trial. She was so confident that they would take me and she was fighting so hard to include me that she had me wash out, and washing out means you stop all treatment and get ready for your new treatment.
So it’s important to know that you can always ask for exceptions. And asking, it doesn’t hurt. The worst they could say is no. So in my case, we asked and they said, okay. During this time of washout – in my opinion, I was washed out for too long. And I wound up having another brain met show up. So we had to put the brakes on all the forms, all the enrollment, everything – screeching halt. And again, ask permission to get treated because it said stable brain mets. Well, once you’re treated, you can’t really see if you’re stable for months. It just takes a long time for the radiation to settle down, to see if the met has died. And a lot of times, dying cells look the same as growing cells. So I was freaking out like, I can’t wait three months, I’m going to have more brain mets.
I mean, just sending polite emails. Every email, polite as can be. But every day – pressure on, pressure on, squeaky wheel. And finally, they agreed. They would rescan me 10 days post-treatment of the brain met. And the other exception I got, right off the bat, I said, because they are local to LA and my treating facility is local – right off the bat, I said, I will only do brain stuff with my brain surgeon.
I’ve had a relationship with him since 2008. Yes. He started off as 13, he’s now a grown man, but he is my guy. And it’s gotta be apples to apples – I can’t start going to another facility with other opinions. So they made that exception and they allowed me 10 days post-scanner, I mean, post-SBRT, targeted brain radiation, 10 days to get a scan, just to prove no new mets. So it was a bit of a gray zone. We couldn’t say for sure, the old met was killed, but we could say no new mets. And so she enrolled me. I started that trial the day after Christmas in 2019.
And how long did you remain on that trial?
That was probably one of the hardest therapies I’ve ever done. I never recovered every infusion. So it was a three-week protocol and I would have an infusion and it took the most from me, but it did the most for me. So it kept me not just stable, but it got rid of so much disease for almost one whole year.
I tried during that entire year, so many different things to manage, nausea was my big thing. So, I mean, every month we would try either a different drug, a different combination of drugs. And again, the nurse practitioner and their team, their clinical trial team – they worked so hard. They got a lot of exceptions, permission from the sponsor to try to help my quality of life, so I could remain in the trial.
The sponsor invests a lot. By the time they have scanned you and run all your labs, pulled any biopsies, they’re heavily, monetarily invested. And so they want you to be able to stay in their trial. So they are willing to, you know, if it means approving another anti-nausea medication, they’re usually willing to do stuff to accommodate to keep us alive and relatively well.
Advice – NOTE: This video is on the Advice Section of the Website
Go with the flow, but I think it’s important to show that you’re so dedicated to your own survival and wellbeing. And that, yes, I understand you have to collect data, you have to make categories and rules and so forth. I totally understand the scientific process, I respect it.
But, there’s a “Flori survival process” and there’s a patient survival process. And that includes being feisty and kind of having that backbone to stand up for yourself. I recommend it. I think that it has served me very, very well. And many times, maybe I’m a bit of a pain in the neck, but I’m still here 14 and a half years later. And some of that is because, yeah, I self-advocate and I push.