Thomas Keenan

AFTER KEITH DIXON LOST his wife, Serenity, to metastatic breast cancer, he regretted that he hadn’t taken more pictures to remember her by. The next best thing, the photographer decided, would be to document the experiences of others affected by the disease.

To realize his vision, Dixon partnered with Beth Fairchild, a tattoo artist with stage 4 metastatic breast cancer who has long appreciated the way visual art and images can grab people’s interest. This past spring, Fairchild oversaw the Serenity Project, which features interviews with 16 people who have metastatic breast cancer — and Dixon’s underwater photographs of them adorned with body paint.

The fanciful, dreamlike images of the patients, some holding fabric that floats dramatically around them, are part of a support and research fundraising collaboration between the advocacy group METAvivor, of which Fairchild is president, and the pharmaceutical company Eisai, Inc. The images will be featured in a 2018 calendar, and prints will be available for sale. The artwork is designed to draw attention to people who have this form of breast cancer, so that others will better understand what they are facing. In contrast with people who have breast cancer that has not metastasized, meaning that it has not spread outside the breast, those with metastatic breast cancer will die from the disease. Ironically, a patient with metastatic breast cancer may look healthier than someone undergoing chemotherapy who will very likely recover.

“My hair is down to my shoulders, and I look like a normal, healthy woman, walking around,” Fairchild said. “The fact is, I’m much sicker than an early-stage patient who is bald, who will move on after treatment. The end of my treatment is death.”

The Serenity Project is also designed to reflect the diversity of the people affected by metastatic breast cancer. Says Fairchild: “I wanted people to be able to look at the calendar and say, ‘Oh, that person is just like me.’”

Often, representatives of the breast cancer community are middle-aged white women, who make up a significant portion of the population with the disease. However, breast cancer does not discriminate. For example, one reason an Ashkenazi Jew was chosen to participate was that she represented a group in which breast cancer is more common than in the general population. The project also includes two African-American women, an Asian-American woman, a Hispanic woman, a deaf woman and a man. The patients range from young adult to elderly. By sharing these varied images, those running the project aim to clear up the misconception that only a particular type of person gets breast cancer.

Dixon’s wife died in 2010, and her story inspired the project. “We wanted to be able to honor her,” Fairchild says.

Dixon’s current wife, Ren Allen, provided the final piece of the plan. A body painter, Allen lost her mother to metastatic breast cancer. Fairchild envisioned a project in which Allen’s artwork would depict aspects of patients’ cancer experiences.

At the time the project was being mapped out, Eisai was already carrying out a social media campaign called #ThisIsMBC. Its goals: to dispel misperceptions about metastatic breast cancer, provide social support for patients and help them come to terms with the disease. Fairchild, who was involved in the launch of that campaign, proposed the Serenity Project to Eisai, which partnered with METAvivor to carry it out.

Teresa Cronin, of Eisai, recalled her first reaction: “When Beth came to us with this project, we were absolutely delighted, and felt like it was a good extension of the public education campaign that we launched a year ago,” she said.

The 16 patients chosen for the Serenity Project received an all-expenses-paid trip to Jonesborough, Tennessee. There, the participants and program leaders discussed what should be expressed through the photo shoot. Fairchild asked the 15 women and one man the same set of questions; Allen sat in on the interviews and then spoke further with each participant to confirm that she understood what they wanted to communicate.

Finally, Allen began painting. It was a long process, taking anywhere from two to six hours per patient. The living works of art then went to a pool, where Dixon photographed them under water. Interview clips, as well as the photographs, are featured every month on social media, and the calendar that features a picture of each participant will be released the first weekend of October. On October 21, there will be a gallery showing of the art in New York City.

Just before the photo shoot, Fairchild agreed to participate herself. Her good friend, Champagne Joy, had been chosen for the project, but three weeks before it was launched, died from disease-related complications. “That is the harsh reality of what every single person is facing who is in this project,” Fairchild said. Considering her friend’s tattoos, long blue hair and wild Japanese makeup, Fairchild knew she could not replace her with just anyone. At the suggestion of Joy’s husband, Fairchild took her friend’s spot.

“What we did was cover my body with gold paint, so none of my tattoos were visible. Some of the images came out, and I look like an angel or a fairy. It was very whimsical,” Fairchild says.

According to Cronin, Eisai has found that collaborating in the creation of artwork helps people rebuild a sense of self. People often feel alone and broken in the face of metastatic cancer, Fairchild agrees, and being involved in the project was empowering for participants. The images highlight their strength and determination to live the best lives they can, without downplaying the painful aspects of living with a terminal illness.

Building a legacy for people with metastatic breast cancer has always been at the heart of the project, a desire shared by everyone who participated.

“When all 16 of us pass away, die in our physical selves, these images and these stories — the way they impact other people &mdash; are going to live on far beyond death,” she said.

METAvivor specifically funds research into treatments that can help those with metastatic breast cancer, and because of sponsorship, such as that given by Eisai, all proceeds raised by METAvivor go directly toward that funding; none of it pays overhead or salaries. Therefore, the money raised from the sale of Serenity Project calendars and prints will go toward benefiting those who have or will get the disease.

Articles

Through fanciful underwater photos of people with metastatic breast cancer, the Serenity Project aims to raise awareness and funds.

Portraits of Hope Raise Money for Metastatic Breast Cancer

A vaccine for glioblastoma — a form of brain cancer –  has received orphan drug designation from the FDA, which could make it easier for scientists to test the treatment in clinical trials.

The designation recognizes that the vaccine, an immunotherapy called SurVaxM, would treat a rare disease, defined as one that affects a patient population of less than 200,000 Americans. The vaccine’s developers hope this means that the required size of phase 3 trials of SurVaxM will be smaller than for drugs designed to treat non-rare diseases because of the small pool of possible study participants and the lack of effective treatments for glioblastoma.

“We hope that would speed up phase 3 clinical trials, simply by reducing the patient load that we would have to accumulate,” said co-inventor Michael Ciesielski, Ph.D., assistant professor of neurosurgery at Roswell Park Cancer Institute and chief scientific officer at MimiVax, the Roswell Park spinoff company producing and testing the vaccine.

Although the orphan drug designation does not guarantee FDA approval, it does indicate a vetting of the drug by the FDA which ended favorably.

SurVaxM was developed at Roswell Park, one of five institutions where phase 2 trials of the drug are being conducted. The vaccine’s other co-inventor is Robert Fenstermaker, M.D., chair of neurosurgery at Roswell Park and chief medical officer at MimiVax.

SurVaxM boosts the immune system’s ability to attack the protein survivin, whose activity otherwise contributes to cancer’s resistance against treatments such as chemotherapy and radiotherapy. Survivin is found in over 90 percent of glioblastoma cases. It is also present in most other kinds of cancerous tumors, so further research may find that SurVaxM’s application extends beyond patients with glioblastoma.

Survivin is normally only found in early childhood and the developing fetus, but has harmful effects when it contributes to the growth of cancerous tumors.  It’s “a stress protein that tumor cells have tapped into to allow them to continue to divide longer than they should,” Ciesielski explains. “It prevents cells from turning on their programmed cell death pathway.”

Administered by injection, the medication releases a peptide molecule to which the immune system responds by producing antibodies and T cells. Ciesielski said that this causes a cross reaction against the survivin protein found in the tumors. This means that the response the immune system sends to attack the peptide molecule will also target survivin, which the immune system often fails to respond to. He said that SurVaxM’s response is a multifaceted one, somewhat rare among peptide vaccines: “Many of these vaccines either generate an antibody response only or a T-cell response only. There are not a lot that get both, which is what we’re seeing from this one.”

 The vaccine would be administered as part of the typical treatment process. In a phase 1 trial of patients with recurrent glioblastoma, it was injected just after the tumor was removed. In this trial, most patients developed immune responses to survivin. Three of eight evaluable patients had stable disease 12 months after starting the treatment, and no drug-related side effects beyond those deemed mild or moderate occurred.

In the ongoing phase 2 trials, the vaccine is being administered to newly diagnosed patients, who receive it after surgery and radiation, but before chemotherapy treatment. The purpose of the phase 2 studies is to determine whether SurvVaxM has any impact on the effectiveness of the most common glioblastoma chemotherapy drug, temozolomide, in treating tumors.

Because phase 2 trials are still underway, Ciesielski was unable to offer details except that an interim analysis had concluded that the trials should continue. This suggests that SurVaxM has not detracted from the effectiveness of chemotherapy treatment in these patients.

A Potential Treatment for Additional Cancer Types

Ciesielski also noted his hope that glioblastoma would not be the only cancer to which the new drug would be applicable. Survivin, he said, “is expressed in about 80 percent of all other cancers: prostate, ovarian, breast, leukemia,” making SurVaxM “more of a cancer vaccine at this point. We are looking at it in the glioblastoma world because that’s where our training and background is, being in neuro-oncology. We have to start somewhere, but it’s something we’d like to see applied to many cancers.”

At present, for instance, clinical trials are underway to determine the effect of the vaccine on multiple myeloma.

The designation recognizes that the vaccine, an immunotherapy called SurVaxM, would treat a rare disease, defined as one that affects a patient population of less than 200,000 Americans. However, because it acts on a protein that appears in 80 percent of cancers generally, SurVaxM may have wider applications.  

Glioblastoma Vaccine to Be Tested as Orphan Drug, Easing Clinical Trials Process

The American Lung Association (ALA) in recent years has identified stigma as a significant factor contributing to the poor outcomes of patients with lung cancer.

Alongside ongoing efforts at prevention and medical treatment of lung cancer, the ALA has made it a priority to address lung cancer stigma and its effects on patients.

Carly Ornstein, the ALA’s national director of lung cancer education, said that research shows that “the stigma has a negative effect on every facet of life with lung cancer.”

These include delays in seeking treatment out of fear of judgment, reluctance in disclosing a diagnosis, weakening relationships with loved ones and lower quality of care.

The ALA contends that stigma is part of the reason research funding for lung cancer is low, relative to other cancers.

According to the National Institutes of Health, lung cancer received about $250 million in recent years in research funding annually, and it claimed 25 percent of all cancer deaths. That means that about $1,700 is spent for every person who dies each year from lung cancer. That spending rate is much higher for other forms of cancer.

Leukemia receives about $240 million a year and accounts for about 4 percent of cancer deaths. That means almost $10,000 is spent for every person who dies of leukemia. For breast cancer, that number is about $13,000.

The NIH states that funding is provided to research based on its scientific merits, not the type of cancer it targets. At the same time, the presence of a distinct stigma connected to lung cancer may contribute to an atmosphere in which lung cancer gets less attention than its seriousness merits.

Stigmatized groups, according to the ALA, are those that “are judged negatively or experience discrimination because of some personal characteristic or behavior.” For patients with lung cancer, the effect of the stigma is most often a sense that they deserve their cancer.

In addition, the survival rate contributes to the perception that lung cancer is a “death sentence”. The five-year survival rate for lung cancer is about 18 percent.

The blame associated with lung cancer is often a result of the proven link between smoking history and lung cancer diagnosis. More than 50 years ago, lung cancer became the first health effect connected with smoking.

To mobilize the public against smoking, Ornstein said, “older anti-smoking campaigns portrayed smokers as evil, bad and ugly.”

The ALA in no way denies the essential place of anti-tobacco initiatives in lung cancer prevention programs. Yet, one effect of the way some campaigns in the past were carried out has been an unhelpful stigma which further harms an already vulnerable population.

 To counteract the stigma, the ALA opted against carrying out a “stop the stigma” campaign in the media. This is because some experts warn that similar efforts have been found counterproductive in the past.

Instead of working against stigma, Ornstein explained, such campaigns can bring more negative attention to stigmatized groups, cementing the stigma in the public’s mind. The ALA began its efforts against stigma by first educating its own staff on the effects of stigma, giving them a new lens through which to approach the experiences of patients with lung cancer.

Only a few years ago, such training was not in use. Even advocates for lung health may have been guilty of unknowingly contributing to the stigma when interacting with patients. Until recently, they lacked consciousness of the seriousness of the stigma.

In addition to educating their own staff, the ALA has resources on its website to help advocates frame discussion about lung cancer in non-blaming ways. These resources are intended especially for advocates working with the ALA’s advocacy initiative LUNG FORCE.

“Did you smoke?” is the most common question that patients with lung cancer report being asked after revealing a diagnosis. Whatever its motive, this question frequently comes across as shaming.

Often patients feel the intention behind the question is a sort of accusation, to determine whether they are worthy of empathy or support, based on whether they have a smoking history or not.

“The question may make lung cancer patients feel unsupported by loved ones, on top of the self-blame they are often feeling already,” Ornstein explained. A large part of fighting the stigma is to adopt a new way of speaking about lung cancer, one which rids it of words like “deserve” and “cause,” which imply blame.

The ALA suggests advocates and patients try to discuss lung cancer without repeatedly bringing up smoking. When patients or advocates are asked about smoking, they are advised to mention that, in addition to personal smoking history, exposure to radon gas, second hand smoke, and asbestos are risk factors.

About 20 percent of patients have no smoking history, so it is helpful to challenge the common assumption that all lung cancer is brought about by smoking.

Focusing on positive developments in research to counteract hopelessness is also effective. The message that one’s cancer is impossible to treat has the negative consequence of reduced community engagement and attention to one’s disease. While the five-year survival rate is lower than we would like, more and more drugs are approved every year, Ornstein noted.

When patients are diagnosed with lung cancer, one of the first questions they're often asked is, "Do you have a history of smoking?" 

The American Lung Association Seeks to End Stigma

’s Facebook users to share the kindest moments they had experienced since getting their cancer diagnosis.

 can be seen as a kind of antidote to the hundreds of disturbing comments that poured in to another recent question, "What was the dumbest thing anyone has ever said to you about your cancer?," which produced some truly shocking stories. 

This time, however, our Facebook followers told us about receiving anonymous checks, full meals during treatment, visits from long-lost friends and help with their day-to-day chores.

Many users expressed gratitude for the companionship and empathy from friends and relatives during their cancer journeys. We've selected some of the most striking comments below. We begin with a particularly warm act of compassion, which, of course, involves a puppy.

Lisa Rundall calls these pups her "goons."

Especially once she got sick, Lisa Rundall couldn't stand to be away from her puppies, so a friend came up with a way she could keep them near, even in the hospital.

"My friend had a blanket made out of a picture of my goons(pups). That way each time I had a hospital visit they were with me❤❤"

 Connie Beck Schmidt got support from all directions in the form of food, cards and gifts. "One thing that stands out, however, is when my husband's family surprised me on Thanksgiving by everyone wearing pink T-shirts that said 'Keep Calm and Fight On' #conniestrong. Even the dog was wearing one!"

People with cancer reported time after time that bills were mysteriously paid and other burdens generally lifted.

Barb Wills shared a story from Paul Wills: "Someone paid our Association fees for 6 months. Broke down and cried of happy tears. I am a MALE BREAST CANCER SURVIVER!"

 David M. Kaumann recalled: "When my wife was incapacitated following radiation and surgery for neck mets one of my professional colleagues and his wife cooked three weeks worth of meals, bagged, and froze them. Then traveled 40 miles to deliver them."

 "My friend, Lynne Vehlewald, went to every chemo and doctor appointment with me," wrote Mary Ann Huslig. "She and her husband let me stay overnight after each chemo and took me to dinner with ice cream dessert included. They were my angels during the long chemo treatments."

 "I just opened an envelope and it had a check for house cleaning for one month! Chemo starts Thursday," Audrey Wharton said.

 "The day I had my lumpectomy as an out patient it snowed," recalled Pam Robinson Thompson. "My husband's coworker came and cleared our driveway and left me a gift. We didn't know he did it till we got home that night."

 Diana Ballinger remembered someone who helped her through the emotional minefield that cancer can be.

"Sue Beasley was the friend and fellow survivor who told me it was okay to cry, get angry and curl up in the fetal position, if necessary. She was there for me every step of the way , and I will never forget it❤"

 Athanasia Frantzeskakis got support from nearby. "My next door neighbor sent me get well cards every day!!!! For six months and more !!! And funny ones!!!"

 "My church brought my family dinner every week that I had chemo, for 6 months straight," wrote Terri Sirias. "And during Christmas, they came by and sang Christmas carols."

Vicki Mikulin Prentice said someone important from decades before stepped forward to provide support. "My high school basketball coach of fifty years ago called me and prayed for me over the phone. Then, weeks later he and his wife made a visit to my house (hours away)."

 Ines Hill remembered learning to think of herself in a new way. "'You inspire me!' Many people unexpectedly said that to me when I never thought of myself as an inspiration."

Bills mysteriously paid. Old friends reunited. These are some of the stories of compassion told by people touched by cancer.

Thomas Keenan

Portraits of Hope Raise Money for Metastatic Breast Cancer

Glioblastoma Vaccine to Be Tested as Orphan Drug, Easing Clinical Trials Process

The American Lung Association Seeks to End Stigma

Survivors Share Kind Moments Along Their Cancer Journeys

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