Sandra Hillburn walked miles every day with a friend. She hiked mountains, played golf and tennis, and skied. In 2005, those things began to feel impossible.
“I just started to feel weaker and weaker and went from doctor to doctor, looking for a diagnosis, which I did not receive,” Hillburn said in an interview with Deborah Doroshow, an oncologist at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai.
Doroshow, who is also a historian of medicine, is a member of the editorial board of the Cancer History Project.
Their conversation is available on the Cancer History Project podcast.
Slowly, Hilburn’s left side became paralyzed. At work, she couldn’t walk without leaning against a wall.
“Colleagues were passing me and saying, ‘I’m praying for you,’” said Hillburn, a Fort Lee, NJ, resident. “And still, I could not see what I looked like and that my left side was so weak. Even when I looked in the mirror, I didn’t see that the left side of my face fell, but I knew something was wrong and it wasn’t being diagnosed.”
Seventeen years ago, in April 2006, Hillburn’s daughter brought her to a doctor in New York City. The doctor thought Hillburn was having a stroke, and sent her for a CAT scan.
“That showed that I had a brain mass and I was admitted on an emergency basis to a New York City hospital where I was told I had two or three months to live with surgery, chemotherapy, radiation, and then, palliative care,” Hillburn said.
Hillburn was diagnosed with stage 4 glioblastoma multiforme.
The family heard through a friend that doctors at Duke Cancer Institute were developing new treatments for glioblastoma, the cancer she was diagnosed with. From there, Hillburn met with Allan Friedman, a neurosurgeon at Duke Cancer Center’s Brain Tumor Clinic.
Her first treatment would be brain surgery.
“There was no choice. I was fading fast. By the time I got to Duke, I could hardly walk or talk. And I was so weak, breathing was becoming difficult,” she said. “I couldn’t wait for the surgery. And when I met Allan Friedman before the surgery, I had such confidence in him. He was just so kind and brilliant.”
The plan was for Friedman to implant a shunt into Hillburn’s brain in addition to removing what he could of the glioblastoma, from there, Hillburn would be treated with monoclonal antibodies. However, the structure of Hillburn’s brain didn’t allow for the shunt to be placed.
Regardless, the surgery was a success. Hillburn felt better afterward, but her doctors had to find a new treatment plan.
A clinical trial led by John Sampson, a neurosurgeon and spine surgeon at Duke Cancer Center Brain Tumor Clinic, became her next treatment option. Before she knew what the study entailed, she said yes.
“If they thought it was good for me, I did too. Yes. I didn’t think I had that much to lose,” she said.
The treatment: An experimental cancer vaccine therapy.
Hillburn’s white blood cells were extracted and exposed to cytomegalovirus (CMV), which is found in glioblastoma cells. From there, doctors created a vaccine designed to target Hillburn’s glioblastoma. She also received chemotherapy and radiation.
“Honestly, I can’t complain about any side effects from any of it. I know people do, but I was still playing golf and I thought I played better golf with the Temodar because it slowed me down,” she said. “I really didn’t have negative experiences.”
Hillburn’s sister and brother-in-law welcomed Hillburn into their home, where she lived for five months while she received radiation treatment at Mount Sinai.
“Not only were they great company, but my sister accompanied me wherever we went,” Hillburn said. “We laughed at the most stupid things. We giggled like when we were children and she accompanied me to Duke for the first year, at least. She’s been my partner throughout.”
Hillburn traveled to Duke once a month for the vaccine.
“At first, I thought it was daunting,” she said. ‘How am I going to do this?’ And then I thought, ‘Well, it’s my new job.’ I had always worked, so I just looked at it like that.”
The cancer treatment team at Duke, especially the nurses, made Hillburn’s visit enjoyable.
“The nurses, Denise Lally-Goss and Beth Perry who are on the research team, I just about jump into their arms when I see them,” she said. “Everybody is so loving and caring. I looked forward to going down there. I didn’t mind it at all. The worst part was just getting to the airport.”
Soon, it became clear the treatment was working.
“I felt it,” Hillburn said. “I just felt good. I started walking my steep hills and I just was very fortunate, the surgery just was so positive, and I felt and functioned as I did before the tumor, and the vaccine keeps me going.”
After a while, Hillburn began to wonder whether the vaccine was still helping, or whether her body was able to fight off the glioblastoma without the help. Then COVID-19 hit, and hospitals enforced restrictions and limited the number of visits.
“After the coronavirus hit, I had to wait a year before getting to Duke, and the lymph nodes near my groin started to really ache,” she said. “I had that feeling when I had cancer.”
A few weeks after Hillburn developed this feeling, she received the vaccine again.
“I know it’s the vaccine, because I got the vaccine and my lymph nodes stopped hurting. So I thought, ‘Aha, not me. It is the vaccine for sure,’” she said. “And I know that it’s given me a good quality of life.”
Every six months, Hillburn looks forward to visiting Duke to receive the cancer vaccine.
Every weekend, Henry Friedman, James B. Powell, Jr. Distinguished Professor of Pediatric Oncology in the School of Medicine, professor of neurosurgery, pediatrics, medicine, pathology, and member of the Duke Cancer Institute, who leads the Preston Robert Tisch Brain Tumor Center at Duke, gives her a call.
“He calls me every single weekend, for more than 16 years, to see how I’m doing. I even said to him at one point, ‘Henry, how about I’ll call you if I’m not doing well?’” she said. “He goes, ‘Will it be okay if I still call you?’ Oh, my goodness. Yes. I look forward to speaking to him.”
The full conversation between Hillburn and Doroshow is available on the Cancer History Project podcast.
Sandra Hillburn: I was a special education teacher and I had worked in different agencies within New York state for about 15 years: Department of Labor, Rockland psychiatric center, and ACCES-VR, and they help people with disabilities get retraining and then, get a job. That’s what I did until I developed a glioblastoma. I was at work until the day before I was diagnosed.
SH: That was in 2005. More than 16 years ago. I began to feel extremely fatigued and sick. I knew something was wrong because I usually had an abundance of energy.
I had hiked mountains, played golf, tennis, skied. Mostly, I walked and talked miles every day with a friend. I was always active, and then, I just started to feel weaker and weaker and went from doctor to doctor, looking for a diagnosis, which I did not receive.
SH: Well finally, I just became so weak that…Well, my daughter, Karen was watching me, and very closely because she thought something was wrong. In April of 2006, she came from Brooklyn to Fort Lee to check on me. She took one look and my whole left side was becoming paralyzed. I couldn’t walk without leaning against a wall at work. Colleagues were passing me and saying, “I’m praying for you.”
SH: And still, I could not see what I looked like and that my left side was so weak. Even when I looked in the mirror, I didn’t see that the left side of my face fell, but I knew something was wrong and it wasn’t being diagnosed.
At any rate, my daughter came, she got me and finally, we did find a doctor in New York City who took a look at me, thought I was having a stroke and sent me for a CAT scan. That showed that I had a brain mass and I was admitted on an emergency basis to a New York City hospital where I was told I had two or three months to live with surgery, chemotherapy, radiation, and then, palliative care.
SH: Yeah. But thankfully, my family all gathered at the hospital and through a friend, they heard about Duke’s excellence in treating brain tumors. So, my family and I flew to Durham, where my road to recovery began.
DD: And Sandy, I’m going to stop you there for a minute because I want to learn a little bit more about your experience before you went to Duke.
I’m wondering how the news was broken to you, that you had a brain mass and what you thought on hearing that news?
SH: Oh, I don’t know if I’m going to be allowed to say this on a podcast. When he said you have a brain mass, my response was, “Oh, shit. “I’ll be OK.” That’s what I said to my daughter who was beside me teary eyed. I was assuring her, I’ll be fine, but I did have stage four brain cancer, so I don’t know. Probably because I had a brain tumor, I wasn’t thinking right, but.
SH: I did because I read the New York Times and they had, I don’t know if it was a series of article or an article about a glioblastoma with a little picture of it branching out. So I knew that with a glio, there’s microscopic cells, cancer cells, that can spread and branch out and it’s very hard to get rid of it.
SH: Well, my dear friend found us the doctor in the city, so she knew something was up, and my daughter told her and told the rest of my family. I know that everybody was looking at me because I was not looking well. When people look at you and say, “I’m praying for you,” you know you’re not looking your best. My sister and brother-in-law Helene and Mark were driving down from Boston to see me, just to check on me, and they heard the news while they were driving down, and my sister was driving and my brother-in-law heard it first and said, “Pull over.” They went right to the hospital in the city and my daughter called my brother, Bruce, right away, who’s a dentist in the city and he was really in charge of getting me to Duke and organizing the family.
SH: Well, I heard of them. I didn’t know I’d ever be in one, but I know that they certainly give great hope. So, after I had the surgery… Do you want me to slow down?
SH: Oh, my goodness. Allan Friedman is brilliant. Brilliant surgeon, and I can say that I can function as I did before the brain tumor because of his brilliant surgery. Now, this is what I was told from my family. Originally, I was going to get a shunt put into my brain, and monoclonal antibodies were going to go into the brain to get rid of the glioblastoma, whatever was left, but the structure of my brain negated that plan, and the good thing about Duke is they always have backup plans. So when A doesn’t work, they’ll go to B or C. And when I couldn’t get that…
SH: There was no choice. I was fading fast. By the time I got to Duke, I could hardly walk or talk. And I was so weak, breathing was becoming difficult. So, I couldn’t wait for the surgery. And when I met Allan Friedman before the surgery, I had such confidence in him. He was just so kind and brilliant. I was so fortunate. I was looking forward to that surgery and I tell you, I felt better after it.
SH: I didn’t feel sick after it, I felt great after it. That tumor was out and while they couldn’t put the shunt in, I was asked if I wanted to participate in one of Dr. John Sampson’s clinical trials. And I quickly said, “Yes. Thank you.”
SH: Oh, yes I did. Yes I did.
SH: If they thought it was good for me, I did too. Yes. I didn’t think I had that much to lose.
SH: Well, what I love is it’s made up of my own blood cells, so I haven’t had any bad after effects. I always feel good, because it’s my own blood cells.
SH: No, I don’t recall any of that, honestly. I think my brain wasn’t at its best yet.
But I was happy to participate in a clinical trial. It gives you great hope, but at Duke it’s a little different, they also give you options and hope. They have different clinical trials going all the time, particular to that patient. So for this trial, it was CMV. and let me just think about this, what it is, it’s… I undergo a procedure that takes blood out of one arm, puts it back into the other, and then, a machine separates the white blood cells. They’re looking for the dendritic cells. And so, they get the dendritic cells and they load it with material from a virus. I have to say this right, cytomegalovirus, CMV, that is found in more than 90% of tumor samples from Glio patients, but it’s not found in surrounding brain tissue. So that makes the virus a good target for the body’s immune system. This is what I understand. I’m no expert on it.
SH: Thank you. So then, the treated dendritic cells are reinjected into my body. They migrate to the lymph nodes, where they galvanize the body’s white blood cells to go out and attack the virus lead and brain tumor. So it’s really activating my own immune system to attack whatever glio cells remain.
SH: Oh yes, I did.
SH: OK. Thank you. Yes, I did have Temodar, which I took orally. It’s a pill that can penetrate the blood brain barrier and that was my chemo. And I went to Mount Sinai because I live close by, for radiation. I think it was six weeks. Five days a week for six weeks is what I remember. Honestly, I can’t complain about any side effects from any of it. I know people do, but I was still playing golf and I thought I played better golf with the Temodar because it slowed me down. So, I really didn’t have negative experiences.
SH: Oh, my goodness. Yes. My sister and brother-in-law took me into their home for five months.
SH: So not only were they great company, but my sister accompanied me wherever we went. We laughed at the most stupid things. We giggled like when we were children and she accompanied me to Duke for the first year, at least. She’s been my partner throughout.
SH: Oh my goodness. Yes. So when you have strong family support and love, in addition to great medical care, it all helps.
SH: I did. I started it right after.
SH: I went to Duke every month for 10 years for the vaccine and at first, I thought it was daunting. “How am I going to do this?” And then I thought, “Well, it’s my new job.” I had always worked, so I just looked at it like that. And I have to say, that after a short while, I looked forward to it. The nurses, Denise Lally-Goss and Beth Perry who are on the research team, I just about jump into their arms when I see them. Everybody is so loving and caring. I looked forward to going down there. I didn’t mind it at all. The worst part was just getting to the airport.
But once I was there, I felt great.
SH: Well, I stayed at the Washington Duke inn if I was going to have a few procedures, but usually, I flew in the morning and came back in the evening.
SH: I got the vaccine, came back home.
SH: Originally, my sister and then, no. I was really fine. After the tumor was removed and giving me the vaccine, I just went about life. So I could travel on my own.
SH: Well, I felt it. Nobody actually told me. I just felt good. I started walking my steep hills and I just was very fortunate, the surgery just was so positive, and I felt and functioned as I did before the tumor, and the vaccine keeps me going. You know what happened? Not too long ago, I was starting to think in a very vain way. “Oh, it’s just me, not the vaccine.” And then, the COVID hit and I couldn’t go to Duke. Now I go every six months to Duke for the vaccine, no longer every month.
And after the coronavirus hit, I had to wait a year before getting to Duke and the lymph nodes near my groin started to really ache. I had that feeling when I had cancer. So, shortly after, a few weeks later, I was scheduled for a vaccine at Duke again, I went and this is what changed my mind, and I know it’s the vaccine, because I got the vaccine and my lymph notes stopped hurting. So I thought, “Aha, not me. It is the vaccine for sure.” And I know that it’s given me a good quality of life.
SH: One man years ago, came over to me at the airport in Durham and said, “You know that we’re in the same clinical trial?” And I didn’t know. I still have no idea who was in the same trial as me. And I said, “Oh, isn’t it wonderful? It’s so great.” And he and I and his wife, went out to lunch a few times and we became friendly. And then one day, I got an email from him saying, “You have to hold up the Fort” because his tumor had reoccurred. He was the only person I met who was on the trial, but he did pass away.
SH: No. I tell you why. I shouldn’t say I don’t worry about it, I think about it before I go for my MRI, because the MRI’s not going to lie. It’s going to show everything. So, before I do go, I raise my arms up because when I had a brain tumor, I couldn’t raise my arms. I do a few jumping jacks because I also couldn’t pick up my feet when I had a tumor. And then, I think I’m fine. No. So I don’t go around worrying about it.
SH: I worry now about children and grandchildren, but I try to just go about my business like I always did.
SH: Oh, insignificant things that I shouldn’t even be worried about, because they’re all well and healthy and I have to go “poo, poo, poo.”
SH: They’re all thriving and great and fun.
SH: I’m so boring. No, I’m fine. I’m just fine. I’m happy. I’m fine. I walk miles every day up very steep hills and see children and grandchildren whenever I can. No, I’m just leading a regular normal life. In fact, it’s probably more boring now than before.
SH: My life?
SH: Oh yeah. I don’t date. How’s that?
SH: I just want to see family and friends now. I was single since I’ve been in my thirties, and now I’m in my seventies, so I dated a lot and I thought, “No, just going to concentrate on family and friends now.” That’s my big change, so you can tell…nothing really changed too much.
SH: Well, I’m just so grateful for the doctors and nurses at Duke. If anybody goes there, they’ll be met by brilliant, smart people who are so caring. Henry Friedman. I do have to say that. Henry Friedman is deputy director of the [Duke Cancer Center Brain Tumor Clinic] at Duke. This is a doctor who’s so busy and he calls me every single weekend, for more than 16 years, to see how I’m doing. I even said to him at one point, “Henry, how about I’ll call you if I’m not doing well?” And he’s so sweet. He goes, “Will it be okay if I still call you?” Oh, my goodness. Yes. I look forward to speaking to him.
SH: Yes. I have to say, it’s been the most positive experience. I love it. I can’t complain. People think I’m weird, but I was ready. I think I was ready to retire, and this has been a very good, positive experience.
SH: Oh, my goodness. Thank you.