“I'm not aware of data to show that more young people are being diagnosed with lung cancer,”  says Russell K. Hales, M.D., a radiation oncologist, at the Johns Hopkins Kimmel Cancer Center on the Johns Hopkins Bayview campus. “But anecdotally, it is what I seem to be seeing as well.  What we tend to see in these younger patients with lung cancer, is specific changes like mutations or translocations with a much higher likelihood of responding to one of the targeted therapies.  That means they have a better outlook, because these targeted therapies tend to work, and tend to work well.”

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Research nurse Ellen Lilly-Foreman (left) with Trina Taylor (Isaac)

Research nurse Ellen Lilly-Foreman (left) with Trina Taylor (Isaac)

Trina Taylor (Isaac) has felt God’s guidance throughout her journey with colorectal cancer. She had been out of work for over a year before she was hired at The Johns Hopkins Hospital in 2008, an opportunity that was an answer to her prayers and more.

Isaac remembers feeling sluggish. Already thin, she was losing more weight and didn’t know why. She had some mild GI symptoms, and the combination caused her to go to Johns Hopkins Occupational Health Services, which directs employees to experts who can advise them on health-related issues.

Occupational health got the medical tests rolling, including a colonoscopy. Isaac learned she had advanced colon cancer.

“I prayed. I cried, and then I made up my mind that I was going to beat it,” says Isaac. “I have cancer, but cancer doesn’t have me. I refused to let it control me.”

She had surgery to remove a large portion of her colon and began chemotherapy. Her colleagues at Johns Hopkins rallied around her. “I told my staff, if I come to work wearing stilettos, that’s a sign that it is a good day. If I’m wearing flats, you will know I’m having a tough time,” she says.  They coined the phrase “strength in stilettos” to honor Isaac’s courage and perseverance. “They made me want to come to work,” she says.

Isaac’s cancer continued to grow, and it persisted even with more chemotherapy and the addition of radiation therapy. In 2013, she had a permanent colostomy to surgically remove more of her cancerous colon.

Isaac remains strong and continues to look to clinical trials—studies of experimental new treatments—to gain an edge on her cancer.

“This journey isn’t easy,” she says. Isaac has a young son and can’t help but worry about not being here for him.  She focuses on enjoying each moment with him and bringing hope and information to others battling cancer. She lives her life by her self-proclaimed motto #MMOP—make memories on purpose.

She makes sure her voice is heard. She is a member of a Johns Hopkins patient advisory council, the Hope Project, encouraging other Kimmel Cancer Center patients. She is also an Osto Beauty—one of four African-American women who stepped out of their comfort zone to put a public face to colorectal cancer and offer support to women who have or need colostomies.

“I wanted to go out into the community to talk about my experience,” she says. “People don’t talk about it.”

Isaac has chronicled her journey on Facebook, and the stunning survivor caught the attention of a fashion designer. Now, Isaac can add runway model to her list of accomplishments. More importantly, however, she hopes to be a role model—for her son and for everyone battling cancer.

 

 

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***With the end of summer, this concludes our three-part series about Camp Sunrise, a place of summer fun for pediatric oncology patients at the Johns Hopkins Kimmel Cancer Center. Read parts one and two.

We asked kids and staff from Camp Sunrise to describe whI-felt-like-a-kid-againat they love about camp and their dreams for the future. Here's what they said:

“Camp Sunrise is cool because the other campers know what you’ve been through with hospital stays and surgeries. It’s easy to talk because they understand what you’re talking about.”

—Amir
Camp Sunrise camper

“When I see these kids in the Cancer Center, often they are sick, and we’re administering very complicated therapies. Then I see them at camp each year playing and having such a great time. It’s a wonderful thing for me and for all of the medical staff to see.”
Donald Small
Director of Pediatric Oncology

“I want to be a veterinarian.”
—Faith
Camp Sunrise camper

“Kids with cancer don’t really get to do a lot of fun things. They have to be in a hospital, and that’s not fair for them. They made this camp because they want kids like me to be able to do all of the fun stuff that other kids get to do every day of their lives.”
—Liesl
Camp Sunrise camper

“I’ve been going to camp for nine years, and the reason I keep coming back is the relationships, the family I have with these people. I’ve known them almost my entire life. We’ve been through so much together. It just means so much to me. I have to come back to see them.”
—Billy
Camp Sunrise camper

“When I first came to Camp Sunrise, I was 5 years old and bald. I didn’t know what it was going to be like. I went to campfires, and ate s’mores. I felt like a kid again.”
—Jordan
Camp Sunrise camper

"It really makes your heart warm. It's the best feeling inside to see these kids so happy."
—Marilyn Scalf
Camp Sunrise director

“These kids have been through one of the most difficult things we could imagine. They deserve the best.”
—Alex
Camp Sunrise staff member

“I want to be a designer for Lego.”
—Connor
Camp Sunrise camper

“Just suppose we all worked together to help children with cancer. You come to camp thinking you are giving back, but in reality, the kids are giving us so much more than we give them.”
—Christina
Camp Sunrise staff member

Read more about how to help Camp Sunrise.

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“Staging is a critical part of therapy,” says radiation oncologist Russell K. Hales, M.D. of the Johns Hopkins Kimmel Cancer Center on the Johns Hopkins Bayview campus. “We don’t want to focus only on a tumor in the chest, for example, if there’s something growing in another area of the body. That’s why we fully stage a patient before we start therapy for lung cancer.”

Hales notes that stages are determined with tests such as a PET CT scan, a tumor biopsy, a brain MRI in selected patients, and with an endobronchial ultrasound, or EBUS, or a mediastinsocopy, to confirm whether there are lymph nodes in the chest.

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***With the end of summer, we bring you a three-part series about Camp Sunrise, a place of summer fun for pediatric oncology patients at the Johns Hopkins Kimmel Cancer Center. This is the second part of the series; read part one

Childhood is supposed to be marked by sweet and simple memories, like losing a first tooth, learning how to ride a bicycle and going off to summer camp for the first time. Amanda Endres’ childhood was not so typical. When she was just 8 years old, she faced the frightening diagnosis of an aggressive blood cancer, acute lymphoblastic leukemia (ALL). Then, at 11, her cancer came back, and again at 16. Despite the fear, uncertainty and physical challenges that overshadowed so much of Amanda’s youth, there was a clear and certain bright spot that gave her back some of what cancer had stolen—if only for one week each year.

Amanda and her mother

Amanda and her mother

That bright spot is Camp Sunrise.

Just months after being diagnosed with ALL, Amanda boarded a bus for her first trip to Camp Sunrise. It’s a memory etched firmly in the minds of both Amanda and her mother, Jenni Endres.

FIRST-TIME JITTERS
“I was really excited to go, but when it came time to get on the bus, I was clinging to my mom. I didn’t want to go at all,” Amanda recalls.

Although first-time camp jitters and homesickness are completely normal for young children, cancer is not. It punctuates the worries of parent and child. As Jenni watched Amanda ride away on that bus, she was consumed by fear and doubt. Ever since Amanda had been diagnosed and started an intensive treatment with potent anticancer drugs, Jenni had rarely left her side. Now they’d be apart and have no contact for a week.

On the bus, Amanda’s tears subsided as an older, experienced camper sat down next to her and assured her that their time ahead would be filled with fun and friendships. By the following morning, Amanda says her worries—mostly about making new friends—had completely subsided. The rest of the week was devoted to traditional camp fun and friendships.

“She happened to be bald, but everybody else was too,” says Jenni. “There are no cliques at Camp Sunrise. No one identifies as popular or unpopular.”

As Amanda was busy enjoying skating, dances and other fun activities at Camp Sunrise with her new friends, her mom took the opportunity to play catch-up at home. “It gave me a chance to reconnect with my other three girls,” Jenni says.

QUELLING PARENTS’ ANXIETIES
Like Amanda, her mother soon relaxed, reassured by the knowledge that Camp Sunrise always had a full-time physician and specially trained nurses on-site to provide
care, give treatments and medications, and respond to any medical needs that arose during the week.

If that wasn’t enough, Jenni, whose catering company provides food for Camp Sunrise, also had another source of comfort. Although Jenni could not deliver the meals in person—Camp Sunrise is a parentfree zone—she received glowing reports from her employees who took the meals to camp.

Now that Amanda is no longer a camper, she has visited Camp Sunrise and witnessed firsthand what a special place it is.

“It’s a learning experience for me as a mom to see how the kids help each other and are comfortable with each other. It’s a good place. It’s a happy place,” says Jenni.

It’s not surprising that most campers choose to return to Camp Sunrise every summer. Amanda has only missed one summer since that first trip in 2008. It was the year of her first relapse, and the more intense therapy used against the resistant cancer cells that had caused her cancer to come back led to side effects and hospital stays that kept Amanda from camp that year. “I was really bummed, but I went back next year,” Amanda says.

SPECIAL BONDS
Camp Sunrise offers more than the traditional summer camp experience. Amanda says it’s the friendships she’d forged that stand out the most. As time went on and she suffered not one but two relapses with ALL, the distance between her and most of her former friends widened.

“My Camp Sunrise friends were the only ones who would text me every day because they knew exactly what I was going through,” she says.

Though Amanda may have drifted apart from her friends outside of Camp Sunrise, her three sisters remained incredibly supportive. In 2013, when Amanda suffered her second relapse, her younger sister Madison was the bone marrow donor for a unique, Kimmel Cancer Center-developed therapy called a haploidentical bone marrow transplant. Typically, a bone marrow transplant requires a bone marrow donor who is an identical immune match to the patient. Haploidentical transplants expand the donor pool, making it possible to use half-matched donors. The treatment has proven as safe and effective as traditional bone marrow transplants, successfully curing many patients of cancer and other bone marrow and immune diseases. Amanda may be one of them.

A NEW ROLE
At 19, she has come a long way from the little girl who took a bumpy bus ride to Camp Sunrise for the first time. She is busy taking coursework as she prepares for her new goal—to become a pediatric oncology nurse.

This summer, Amanda will also take on a new role at Camp Sunrise. It will be her first year as a counselor. She has spent the past two years in training.

“Now it’s my turn to comfort a scared or shy child on their first bus ride to Camp Sunrise,” says Amanda. “It’s a lot of fun to give back.”

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“Absolutely, yes. All of our therapies, surgery, radiation, chemotherapy, and targeted therapy for lung cancer come with risks and benefits,” says radiation oncologist Russell K. Hales, M.D. of the Johns Hopkins Kimmel Cancer Center on the Johns Hopkins Bayview campus. “We use those therapies only after careful evaluation of the risks of the therapy, versus the benefits of the therapy.”

Hales notes, “There are long term effects, or dangers, of radiation treatment, but in lung cancer, the benefits of radiation usually outweigh these risks. Individual risks would be really driven by an individual patient, and the lung cancer treatment that they're getting."

Specific side effects for lung cancer patients that undergo radiation treatment include:
• having pain or difficulty with swallowing, from irritation of the esophagus, during radiation therapy;
• inflammation of the lung, or pneumonitis, after radiation treatment, which usually goes away within a few months;
• long-term effects of radiation, such as scar tissue that forms in the lung, a rare chance of injury or damage to the heart, or other structures in the chest.

“These side effects sound scary, and treatment innovations can help reduce the likelihood of these side effects occurring,” Hales says, “but even in the most carefully delivered radiation treatment, there is a risk of side effects.”

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***With the end of summer, we bring you a three-part series about Camp Sunrise, a place of summer fun for pediatric oncology patients at the Johns Hopkins Kimmel Cancer Center. Part two features Amanda's story.

What began in 1986 with seven campers has grown into the Kimmel Cancer Center-managed and -operated Camp Sunrise. The camp is entirely volunteer run, with more than 120 campers, 80 trained volunteers and more than 50 medical staff members. Most of the volunteers, including camp directors Marilyn Scalf and Steve Mitchell, were former campers, and many of them have been associated with Camp Sunrise for more than 20 years.

Among them are Annapolis stained glass artist Bobbie Burnett, whoCamp Sunrise has made sun catchers with campers for the past 30 years, and Alex Johnston, who cooks meals for campers. Each year, volunteer Jaclyn Young helps campers make bracelets with special beads that commemorate the year. Some campers boast multiple bracelets, signifying their many visits to Camp Sunrise.

For one very special week each summer, campers and volunteers come together at Elks Camp Barrett in Crownsville, Maryland, for hiking, archery, swimming, rock wall climbing, dancing, crafts, games, sports, campfires and reunions with friends. “It really makes your heart warm. It’s the best feeling inside to see these kids so happy,” says Scalf.

A PLACE LIKE NO OTHER
Camp Sunrise may be the only place where cancer takes a backseat to childhood and teenage fun. For this one week, cancer is not their primary focus. “Our goal is to give campers the best week of their lives,” says Jordan May, a former camper turned volunteer. Beyond the fun, campers treasure the direct connection to other kids who understand and share their unique experience.

“I’ve been going to camp for nine years, and the reason I keep coming back is the relationships, the family I have with these people. I’ve known them almost my entire life. We’ve been through so much together. It just means so much to me. I have to come
back to see them,” says Billy.

Almost every year, there are a few campers who are in hospice care. Camp Sunrise is one of their last experiences, and that realization is not lost on the campers or volunteers. At the end of camp each year, the entire group gathers to plant a tree and decorate it with handmade ornaments that honor campers who lost their cancer battle. As campers return year after year, they see these trees and remember their friends.

SOMETHING FOR EVERYONE
At Camp Sunrise, there is something for everyone. Unlike other camps, no camper is too young, old or sick for Camp Sunrise. Younger campers, 4 and 5 years old, participate in a day camp, and campers 6 to 16 come for a traditional residential sleepover camp, complete with rustic cabins and plenty of outdoor adventures. The older 17 and 18-year-old campers take part in a leadership training program so, if they choose, they may join the ranks of the Camp Sunrise volunteers as camp counselors.

For patients who can’t leave the hospital to go to Camp Sunrise, there is “Camp at Hopkins.” Camp volunteers devote some time to go to the hospital and work with the Child Life teachers to make sure inpatients also have a camp experience with art projects and other activities. The highlight is a special robot that allows the campers at “Camp at Hopkins” to connect with campers at Camp Sunrise.

THE FUNNY FARM
About one-quarter of patients who attend Camp Sunrise are actively being treated for cancer. They rely on the more than 50 Kimmel Cancer Center physicians, nurses and physician assistants who care for them in the medical room campers have dubbed the “Funny Farm.” The medical staff members leave the cancer center and volunteer their time to make sure caregivers are on hand 24 hours a day to administer chemotherapy, draw blood for lab work and provide any other care needed. Campers also come to the Funny Farm for care of camp-related bumps, scrapes, and bruises.

Donald Small, Director of Pediatric Oncology, is among the physicians providing care to campers. “When I see these kids in the Cancer Center, often they are sick, and we’re administering very complicated therapies,” says Small. “Then I see them at camp each year playing and having such a great time. It’s a wonderful thing for me and for all of the medical staff to see.”

CANCER DOESN’T CALL THE SHOTS
For most kids, a cancer diagnosis makes summer camp an impossibility. It becomes one more thing that makes them different from others their age. At Camp Sunrise, cancer doesn’t call the shots. Prostheses are hung behind doors on coat hooks, wigs and scarves are often put aside in favor of bald heads, and no explanations are necessary. Everyone fits in, and everyone there—campers, counselors and volunteers—understands.

Cancer, particularly in children and teens, is more than its physical manifestations. As it disrupts the normal, day-to-day activities and relationships, it also takes an emotional toll. The clinicians and scientists at the Kimmel Cancer Center provide the research, discovery and care that heal the body, and places like Camp Sunrise heal the soul.

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“Certainly, it’s never optimal to have deficiencies in vitamin levels,” says radiation oncologist Russell K. Hales, M.D. of the Johns Hopkins Kimmel Cancer Center on the Johns Hopkins Bayview campus. “We try to make sure that our patients are healthy, and taking a multivitamin every day.”

However, Hales warns against lung cancer patients taking high levels of multivitamins, because it can often counteract the effectiveness of chemotherapy, and radiation.

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Suzanne Topalian

Suzanne Topalian

Suzanne Topalian, M.D., associate director of the Bloomberg~Kimmel Institute for Cancer Immunotherapy, is a pioneer in the search for biomarkers that predict responses to immunotherapy.

In April at the American Association for Cancer Research meeting in New Orleans, Topalian and her colleagues presented data linking a virus-associated cancer, called Merkel cell carcinoma - to response to one type of anti-PD-1 therapy.

In a new, preliminary study, Topalian takes a closer look at kidney cancer and immunotherapy. The kidneys are metabolic organs -- the filters of the body -- that control how nutrients are absorbed and waste is eliminated.

Up to 30 percent of patients with kidney cancer may respond to immunotherapy drugs that target the PD-1 and PD-L1 pathway, but scientists do not know why the majority of patients don't respond, says Topalian.

In the nine among 13 kidney cancers that did not respond to anti-PD-1 therapies, the expression of 110 genes involved in cell metabolism went into overdrive. One gene, called UGT1A6, had particularly high expression, found the researchers. It controls how some cells in the body get rid of toxins.

With these results, the researchers are asking: could tumors use this pathway to rid themselves of toxins, such as medicines and other chemical substances, thereby making the tumor cells more "fit" to keep up their hide-and-seek game with the immune system?

"This is a retrospective study in a limited number of patients, but we think it's a good start in exploring immunotherapy resistance," says Topalian.

In further research, Topalian and her colleagues will investigate the role of UGT1A6 and other metabolic genes in cancer cells and whether their results can be confirmed in larger groups of patients.

Read more: Topalian discusses advances in immunotherapy and the search for new biomarkers of response.

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Charles Drake

Charles Drake

So-called anti-PD-1 drugs, which block the interaction between proteins on cancer and immune cells, are currently approved by the Food and Drug Administration for certain patients with melanoma and non-small cell lung, kidney and bladder cancers. Now, a new study led by scientists at Oregon Health & Science University's Knight Cancer Institute and partially funded by the Bloomberg-Kimmel Institute for Cancer Immunotherapy at Johns Hopkins, has given clinicians hope that some prostate cancer patients may respond to the anti-PD-1 drugs.

In a preliminary report on a clinical trial, 10 patients with advanced prostate cancer that had become resistant to a common hormone therapy called enzalutamide were treated with the PD-1 blocking drug pembrolizumab.  Of these patients, three experienced substantial reductions in their levels of prostate specific antigen (PSA), a marker of treatment response, from 46, 71 and 2503 ng/ml to less than 0.1 ng/ml. Two of the three patients also experienced tumor shrinkage of at least 50 percent of their total tumor volume – i.e. “partial responses.”

The three patients remain progression-free at 30, 55 and 16 weeks of follow up. The rest of the patients had stable disease or did not benefit from the treatment. One patient died of his prostate cancer. Adverse events included hypothyroidism in two patients and muscle inflammation in one subject.

Although it remains to be seen whether anti-PD-therapy has an effect on survival in prostate cancer, immunology expert Charles Drake, M.D., Ph.D., an associate director of the Bloomberg-Kimmel Institute, says that this type of treatment response is not the norm for prostate cancer patients whose disease has progressed after hormone therapy.

“Prior to these data, there was consensus that PD-1 blockade was ineffective for these patients, but this may change the way we think about immunotherapy and prostate cancer,” says Drake. Going forward, additional prostate cancer patients will be enrolled in the ongoing study, and several related studies are being planned.

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