Study Questions Exclusion of Cancer Survivors from Trials


“A quarter of newly diagnosed cancer patients 65 or older are survivors who had a prior cancer — often preventing them from participating in clinical trials, researchers from UT Southwestern’s Simmons Cancer Center have found.

“The UT Southwestern scientists found that 11 percent of individuals ages 20-64 had a history of a prior cancer, and 25 percent of individuals 65 or older had a history of a prior cancer.

“As the number of cancer survivors grows, more individuals are being excluded from cancer clinical trials that could benefit them when diagnosed with a second cancer.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.

Super Patient and Storyteller Adam Hayden Takes an Active Approach to Glioblastoma Treatment

On the day after Christmas of 2014, Adam Hayden experienced his first strange “episode.”

“We had just carried all the presents upstairs, and as I was walking towards our bedroom I was struck by this strange lightheadedness that I hadn’t experienced before,” he says. “I didn’t collapse, I didn’t pass out, I just kind of folded down to the ground.”

Adam and his wife Whitney, parents of three young children, chalked up the incident to holiday stress. But over the next year and a half, he kept having similar inexplicable episodes. Finally, in May of 2016, an MRI scan revealed a 71-milimeter tumor in the parietal lobe of Adam’s brain. The episodes had been seizures—symptoms of the tumor.

“When you have an MRI scan like that, things start to move really quickly,” Adam says. A few days after the scan, he was in the operating room to remove the tumor. The impact of the surgery on his brain left him in a wheelchair, and he needed intensive physical therapy to restore his ability to walk.

Meanwhile, Adam’s tumor tissue was analyzed, and on June 10, 2016, he received a diagnosis of glioblastoma. He began a standard treatment protocol of initial chemotherapy and radiotherapy followed by a long-term, 11-cycle chemotherapy regimen to keep the tumor from growing back.

“My oncologist said we could go to 12 cycles of maintenance chemo, but there has not been a randomized controlled trial validating that more is better, so taking the side effects into account, my wife and I decided to stop at 11 cycles,” Adam says. “That was in July, and I have not been on any active treatment since then.”

In late 2016, Adam’s oncologist suggested that he supplement his standard treatment with Optune, a device that had recently been approved by the U.S. Food and Drug Administration. Optune is a portable device worn on the head that produces an electrical field intended to disrupt cell division, thereby preventing tumor growth.

Adam says that his experience with Optune’s manufacturers was “terrific,” and he used the device for over two months. Ultimately, however, he and his wife decided it wasn’t for them.

“What the clinical trials show is that Optune provides a median of five months’ extra survival, sometimes much more and sometimes less, depending on the patient,” Adam says. “But the kids were afraid of how it looked, it was cumbersome to handle, and it was just an obstacle to daily living, so after hours and hours of talking about it, we made the decision to discontinue.”

Writing as medicine

As a graduate-trained philosopher with a penchant for writing, Adam was compelled to document his glioblastoma experience on a blog he named Glioblastology. He credits his father and grandfather, both pastors, with instilling him with a knack for storytelling.

“My grandfather was a loud, larger-than-life figure with a belly laugh, and storytelling was commonplace around the dinner table any time we visited,” Adam says. So when Adam received his glioblastoma diagnosis, he says, it felt natural to share his story online.

“People say, ‘it’s really courageous of you to live your journey publicly,’ but I was already living on social media, and it would have been stranger if I dropped off the map.”

Adam started writing immediately. “The day after my surgery, as soon as I could lift my head off the pillow, I asked my wife, ‘where’s my journal?’ ” he says. “It was therapeutic for me to write and tell my story.”

But Adam worried that he’d lose his readers’ interest if he just told his story over and over again. So he began to use his blog to put his story into a different context. “I began to write with the goal of teaching clinicians, patients, and others how to find value in their experiences.”

After publishing many posts, Adam was thrilled to discover that what he was doing on his blog—and what so many other cancer patients do—had a name: narrative medicine. In this approach, narrative structure is applied to patients’ experiences with illness and treatment in an effort to enhance the healing process.

Adam became especially interested in the works of narrative medicine practitioner Rita Charon, MD, at Columbia University. After studying Charon’s work, Adam was honored to present at a medical ethics conference, with Charon in the audience. An example of Adam’s take on narrative medicine is featured in his guest post at the science communication blog, PLOS SciComm.

Adam is actively involved in brain tumor and narrative medicine communities, including the National Brain Tumor Society, and he has shared his perspective in many presentations and publications. Recently, he wrote an open letter to Senator John McCain after news broke of McCain’s own glioblastoma diagnosis.

Over the course of his treatment, Adam has also found valuable support in the #BTSM (Brain Tumor Social Media) community on Twitter, which was co-created by fellow brain tumor patients Liz Salmi and Charlie Blotner. Community members interact with each other regularly by tagging their tweets with “#BTSM” and by participating in live monthly tweet chats, which Adam now co-moderates.

“If there’s something that you’re wondering about or that you think others in the brain tumor space could learn from, you can tweet it and tag it with #BTSM, and you’ll get thoughts and support from the community,” Adam says.

Thinking and talking about brain cancer

Adam says that his background in philosophy has helped shape his approach to glioblastoma treatment. As a graduate student studying the philosophy of science, he developed an acute sense of the limits of human knowledge and understanding.

“I was equipped with this humble way of viewing scientific theories that taught me to ask questions and never be too confident in the answers, knowing that throughout history, our theories have been evolving,” Adam says.

“So when I received my diagnosis, I was able to push past the doom of wondering what would happen to me. I realized that I didn’t have to be defined by whatever I was reading about the latest glioblastoma research since it is always transforming, and I could focus on how I would approach it.”

Adam has also taken a thoughtful approach to discussing brain cancer with his kids. He has found ways to frame his disease using words and ideas his kids can understand, instead of avoiding the topic altogether.

For instance, when Adam was recovering from his surgery, his five-year-old son expressed his concern about his dad’s wellbeing. Off the top of his head, Adam came up with the idea to compare his surgical incision and staples to a knee-scrape—a concept familiar to most kids.

“We talked about what happens when you fall and skin your knee; you put a Band-Aid on it and it scabs, and after a while the scab falls off,” Adam says. “So I told him, ‘that’s going to happen with daddy’s head.’ ”

Adam says he would advise other parents with cancer to be honest and frame things in terms of their kids’ level of understanding.

The “invisibility” of brain cancer

Despite his advanced diagnosis, Adam has not experienced many of the symptoms commonly associated with glioblastoma.

“So many people in the brain tumor community have suffered language processing issues, cognitive impairment, and more as a result of either the tumor or the treatment,” he says. “Fortunately I have tolerated treatment well, and while I do have some motor and sensory symptoms, I’m just about as sharp as I’ve always been.” Adam and his wife have connected with a palliative care doctor to proactively prepare themselves for cognitive decline, a near universal symptom of disease progression for people living with a malignant brain tumor.

The seizures that portended his diagnosis still play a big role in his life. Specifically, Adam regularly experiences focal seizures, in which he gets lightheaded and dizzy with tingling, numbness, and weakness on the left side of his body. The seizures are more likely to occur if he has been working hard, such as by writing.

“I can feel the onset of a seizure pretty well,” Adam says. “I know what my triggers are, and I remind myself to schedule my days around that.” Medication is also helpful in preventing seizures, but Adam notes that many fellow brain tumor patients find these treatments prohibitively expensive.

With his symptoms well-controlled, Adam is often reminded that people tend to assume that everyone they meet is healthy and able-bodied, unless they see an obvious sign otherwise.

“Most people’s picture of a cancer patient is someone who is sickly, thin, and nauseated,” Adam says. “What I try to highlight often in my presentations is that with brain cancer, we may look pretty good on the surface, even though we’re sick. We need to be cognizant of people’s visible disabilities, but also invisible disabilities that don’t always present themselves as obviously.”

Read Adam’s writings and learn more about his activities at his blog, Glioblastology. You can also follow him on Twitter and follow his wife’s writings on her blog, Faith, Hope, and Wine.


Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.

Scientists Exploit Leaks in Blood Brain Barrier to Treat Glioblastoma


“An ovarian cancer drug can leak through the blood brain barrier to reach brain tumours and could be an effective treatment for glioblastoma, suggest results* presented at the National Cancer Research Institute’s (NCRI) Cancer Conference in Liverpool, today (Monday).

“The Cancer Research UK-funded OPARATIC trial,* which was managed by the charity’s Centre for Drug Development, tested whether the ovarian cancer drug olaparib could reach glioblastoma, a type of brain tumour which is very difficult to treat. And early results show it successfully reaches brain tumours at high enough levels for treatment.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.

Inovio Pharmaceuticals Initiates Immuno-Oncology Clinical Study for Glioblastoma in Combination with Regeneron’s PD-1 Inhibitor


“Inovio Pharmaceuticals, Inc. (NASDAQ:INO) today initiated a phase 1b/2a immuno-oncology trial in patients with newly diagnosed glioblastoma (GBM) designed to evaluate cemiplimab (also known as REGN2810), a PD-1 inhibitor developed by Regeneron Pharmaceuticals, Inc.(NASDAQ:REGN), in combination with Inovio’s INO-5401 T cell activating immunotherapy encoding multiple antigens and INO-9012, an immune activator encoding IL-12.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.

TGEN-UCSF Study Uses Genomics to Make Treatment Recommendations for Recurrent Glioblastoma Patients


“Several patients with recurring glioblastoma, a deadly brain cancer, survived for more than a year in a clinical trial believed to be the first to use comprehensive DNA and RNA sequencing of a patient’s tumor to inform treatment for these patients in real-time. The study was led by the Translational Genomics Research Institute (TGen), UC San Francisco (UCSF) and the Ivy Foundation Early Phase Clinical Trials Consortium.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.

Gene Therapy Shows Early Efficacy Against Recurrent Brain Cancer


“More than a quarter of patients with recurrent high-grade glioma, a form of brain cancer, treated with the retroviral vector Toca 511 and the prodrug of the chemotherapy 5-fluorouracil, Toca FC, were alive more than three years after treatment, according to data from a subset of patients in a phase I clinical trial presented at the AACR-NCI-EORTC International Conference on Molecular Targets and Cancer Therapeutics, held Oct. 26-30.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.

Super Caregiver: Allison Brighton Tracks Down the Best Treatment Possible for Her Husband’s Brain Tumor

California resident Allison Brighton is the founder of a Facebook group that unites people dealing with glioblastoma (GBM) so they can discuss their experiences and receive support from each other. Here, she shares her husband’s GBM story.

Bill and I met on June 19, 1993. We fell in love at first sight, got married 5 months later, and had our first son on June 19; one year after we met. On February 16, 1997, our second son Austin was born, then on June 3, 1999, our last son Tyler was born. Happy times; we were so happy.

We decided we were done having children; three sons was enough. We had them in tee-ball, football, bowling, Disney drawing classes, and more—anything that a boy could do. They were like three little munchkins, and we couldn’t love them enough!

The years passed by, and in 2001 Billy said his eyes were giving him problems. “Huh,” I thought, “then go to an optometrist.” So he went, and they found nothing. “Ok,” we both thought, “weird.”

Then, two months later, Bill said again that his eyes were acting strange, and he was getting headaches at this point. So he went back to the optometrist and told the doctor, “something is not right.”

The doctor examined Billy again and said, “There’s nothing wrong with your eyes, so I recommend you get an MRI.” So, our primary care doctor ordered an emergency MRI. At this point Bill and I were starting to get worried. We went to get his MRI and then headed home to wait for the results, which would be days away.

Bam! The phone rang at about 7:30 that night, and it was Bill’s doctor. The doctor went on to tell Bill that he had a tumor the size of a baseball…and needed to have it removed immediately. We both were in shock. There are no words to describe the feeling.

A couple days later, Bill went in for a craniotomy to remove the tumor tissue, with our family and friends joining us at the hospital.

Now, Billy’s grandmother had brain tumors, but they were never cancerous, so she continued to lead a pretty normal life. And we all assumed that Bill’s tumor was the same kind as his grandma’s—not cancer.

Well, Bill was in surgery for hours; I can’t even remember how long his surgery was. But when the surgeon comes out with a nurse at his side, you know something’s not right.

The doctor started telling us how well Bill did in surgery and how he was now resting in the ICU. “Ok,” I thought, “but what was the tumor?” The doctor went on to tell us that Bill had a malignant brain tumor, grade 4 GBM. (They later sent a tumor sample out for a second opinion to a location in San Francisco, which confirmed it was GBM).

The doctor told us that Bill had about six months to live. I fell on the floor, literally, started vomiting, and my two sisters-in-law had to help me to the bathroom. At that point, I blacked out.

When I came to, I had to go see Billy. I had told Billy I would be the first face he’d see when he came out of surgery. But I just couldn’t; his parents went in first, then my father, and then me.

When I entered the room to see Bill, he stared at me with his blue eyes and asked, “do I have cancer?” We had been told by the doctor not to tell Billy he had cancer because he needed his strength to recover from the surgery.

I tried lying, but I just couldn’t. I told him that, yes, he had brain cancer, and I crawled up into his bed and cried with him.

Three days later, Bill was sent home with hospice services. At this point, he didn’t seem to need hospice care because he was walking and talking just like normal. So, I didn’t call them.

With all of this happening so quickly, there was no time for any extra research. Bill had his surgery at St. Bernardine’s in San Bernardino, California. They took out 90 percent of the tumor and said it was deep-seated. But we were lucky to have a great doctor, Dr. Rowe, perform the surgery.

When we got home from that surgery, my mother, my dad, Bill’s dad, and I began researching like mad. On the internet, making phone calls—anything we could do to find a doctor to ensure that Billy would live. We researched and researched! As you could imagine, we had never heard of GBM until Bill was diagnosed. But we weren’t going to settle for anyone, and we wanted the best for Bill.

My research lead me to three other doctors, and I made appointments with the two that were here in Los Angeles. Dr. Cloughesy at UCLA wanted to reopen Billy’s tumor site and place chemo wafers inside. Dr. Black at USC wanted to reopen his brain and take out more tissue. We didn’t want to do another surgery, so neither of these options would work for us.

Next, we wanted to see the third doctor I had found: Dr. Friedman at the brain tumor center at Duke in North Carolina. So our friends started raising money for us to travel to help save Bill’s life. They did raffles, car washes, silent auctions, and even had a softball tournament with all the bells and whistles! So many people reached out; it was incredible. We raised so much money, and it was put into a Fight For Life Fund for Bill. We’re very thankful for everyone’s help.

Then, thanks to the fundraising efforts, Bill’s dad, myself, and Billy boarded the plane, and off we went, not knowing what to expect. We touched down in North Carolina, and then we were off to meet Dr. Friedman.

As we waited for the doctor to meet with us, we were all nerves, of course. But when he walked in, I swear I knew that second that he was the doctor for us. He was so passionate and caring, and he seemed absolutely concerned for Bill. He was the first doctor to say, “let’s kill this beast before it grows back.” And that was all it took.

We decided that Dr. Friedman would prescribe Bill his chemo and radiation. Then we would fly home and go to Bill’s oncologist to administer what Dr. Friedman prescribed. Our two doctors worked beautifully together. Bill was bombarded with Temodar, CPT-11, some additional chemo drugs, Celebrex, and radiation.

Dr. Friedman said that Bill was as healthy as a horse and could handle the amounts of the chemo drugs he was prescribing. So Bill went through the whole chemo and radiation process with almost no symptoms. He did have some vomiting and sickness, and he took some time off when needed. But he was so young, at age 30, and very fit, so the doctor had no problem with him continuing to work, for the most part.

At one point, I did have to put my foot down and tell the doctor that Bill couldn’t take the last treatment of CPT-11 because he was on death’s door; he had lost 40 lbs. in one week. So we didn’t do it.

See, doctors work for patients, not the other way around, and I made sure that our doctors knew this. I was very young (28 years old) and very aggressive and pushy when it came to Bill’s life. He had to see our boys grow up.

As you can imagine after all those treatments, Billy’s first MRI after treatment showed necrosis—dead tissue at the site of the removed tumor. But the tumor hadn’t grown back, so they did not put Billy on any more treatments, but scheduled an MRI every 3–6 months.

The idea of no more treatments was scary. “Yikes,” I thought, but I had to believe in the doctor and in Billy. Billy never complained about being sick; as a matter of fact, he said he knew he would beat it. He was very positive never negative. That’s just Bill’s nature. He did have some eye issues that remained, but nothing that he couldn’t adjust too. He’s a miracle to me.

So we just continue life as normal as normal was, and after 2.5 years, Dr. Friedman said he was in remission (cancer free). Wow, we couldn’t have asked for anything better in life. We were so happy. But the doctor did say Bill would be sterile after all that chemo. Fine with us.

Well, on April 5, 2004, I gave birth to a beautiful baby girl. She was a miracle baby. We couldn’t believe we finally had a girl. She was so precious and beautiful it was undeniable to me that Bill’s cancer was gone and he would live to see our four kids grow up.

As the years passed, the anxiety started to go away, the MRIs stopped, and we were just a normal family again. Don’t get me wrong; it was the hardest thing I have ever had to go through. Over the years, I have had a few midlife crises myself from PTSD, but Billy continues to support me in any way he can. In some ways I feel I’m not good enough for him. He beat the hardest cancer in the world, and I have midlife crisis on my plate. Life is not easy!

It sucks when a loved one becomes sick with cancer. I lost my dad to lung cancer seven years ago. Life throws so many obstacles at you, but if you take it with a grain of salt and stay positive, things always work out—except if cancer is involved.

For a patient and loved one, you need to remember it’s two individuals going through a different process. Bill’s path was much different from my path of being his wife.

You also need to take all the available information in account. We learned so much through our journey, and I wanted to share this story with others to give them hope. There is always hope.

P.S. Our boys are now 23, 20, and 18, and our girl is 13. Bill and I live in Murrieta, California, and have been married almost 24 years. I work part time, and Bill has been with the same company for 30 years. We live a peaceful life and are enjoying watching our children grow into adulthood.


Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.

Study Splits Incurable Childhood Brain Tumors Into 10 New Diseases


“Scientists have found that deadly childhood brain tumours are actually 10 different diseases that should each be diagnosed and treated based on their specific genetic faults.

“The major new study has important implications for treatment, since personalising care for each type of   is likely to be much more effective than grouping them all together as one.

“A team at The Institute of Cancer Research, London, found stark differences among ‘s ‘high grade’ , or gliomas, and that they could be split into at least 10 different cancers.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.

Combination of Optune® with Temozolomide Demonstrates Unprecedented Five-Year Survival for Newly Diagnosed Glioblastoma Patients


“Novocure (NVCR) announced today results from its phase 3 pivotal EF-14 trial adding Optune to temozolomide for the treatment of newly diagnosed glioblastoma (GBM), including results from health-related quality of life analyses, were presented at the American Society for Radiation Oncology’s (ASTRO) 2017 Annual Meeting in San Diego. This marks the first presentation of EF-14 five-year survival and quality of life data at a radiation oncology conference.

“A late-breaking oral presentation focused on Novocure’s EF-14 phase 3 pivotal trial, which demonstrated unprecedented five-year survival results in newly diagnosed GBM. Patients treated with Optune in combination with temozolomide experienced a significant extension of overall survival without added toxicity compared to patients treated with temozolomide alone. The data also showed that Optune-treated patients were able to maintain quality of life for longer compared to patients treated with temozolomide alone.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.