“When I meet with patients, I tell them that there are three critical parts to their therapy. The first is local therapy, such as surgery or radiation. The second is chemotherapy, or systemic therapy. And the third is their overall well-being, such as nutrition,” says Russell K. Hales, M.D.

Hales, a radiation oncologist at the Johns Hopkins Kimmel Cancer Center on the Johns Hopkins Bayview campus, says, “It's critical, that lung cancer patients stay healthy and avoid weight loss as they go through treatment. Your stamina through treatment will affect your ability to get all the treatment that we need to give. As a result, we use nutritionists early on in treatment, because we know that a patient's stamina will drive their overall outcome, and their ability to tolerate the therapies that we'd like for them.”

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Brian Boyle on FOX45 TV

Brian Boyle on FOX45 TV

Master of Health Communications student Brian Boyle will participate in this weekend's Swim Across America Baltimore event, which benefits the Johns Hopkins Kimmel Cancer Center. His father recently celebrated 25 years free of cancer and will be kayaking alongside his son in Sunday's swim event.  "Cancer has impacted our family many times, as it has for millions of people all over the world. I’ve lost childhood friends to cancer. Both of my grandparents on my dad’s side died of cancer (prostate and pancreatic), my uncle passed away (pancreatic) from it last year, and it almost took my dad’s life. I want to do all I possibly can to help find a cure and prevent it," says Boyle.

After his father was treated for cancer, Brian survived his own health crisis after a horrific car accident. But he rebounded with fierce energy that helped him rediscover his passion for swimming. Read Brian's story in the Huffington Post and watch his interview on Fox 45 Baltimore.

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IMG_0764We've heard much about the national Cancer Moonshot led by Vice President Joe Biden aimed at galvanizing resources across the nation to speed the rate of cancer discoveries. The Kimmel Cancer Center’s own deputy director, Elizabeth Jaffee, M.D., is co-chair of the national Cancer Moonshot’s Blue Ribbon Panel that has provided recommendations for the initiative. But on the local level, Maryland hospitals, health experts and community organizers have a long history of working together to help curb cancer.

Every five years, the Maryland Comprehensive Cancer Control Plan defines goals and strategies to help Marylanders reduce cancer risk and improve early detection, treatment and survivorship. The cancer plan is coordinated through Maryland’s Department of Health and Mental Hygiene and funded by the Centers for Disease Control and Prevention. The plan receives input from health professionals, individuals and community leaders throughout the state, and Johns Hopkins experts participate in work groups to update and implement it. Johns Hopkins experts also create reports about implementation of the plan in Maryland and at Johns Hopkins, and host statewide meetings about the plan.

“The current plan includes integration of goals and strategies across many types of cancer,” says Elizabeth Platz, Sc.D., M.P.H., the Kimmel Cancer Center’s co-leader of cancer prevention and control and a professor in the Johns Hopkins Bloomberg School of Public Health.

Platz leads the Maryland Cancer Collaborative, a volunteer group of individuals and organizations charged with prioritizing its strategies and implementing Maryland’s cancer plan. “Most Maryland residents may not know that such a plan exists,” she says. “But work is being done by many of the plan’s collaborators and other stakeholders every day to complete its goals and objectives.”

Maryland’s cancer plan aims to tackle three main areas over the next five years: cancer prevention, reducing the high burden of cancer in Marylanders, and improving cancer survivorship, palliative care and hospice care.

Platz says the plan includes strategies to improve HPV vaccination rates among Maryland adolescents, further enhance tobacco control, promote education regarding familial risk of cancer, and develop systems to track and monitor hospice use.

Among the results from the past five years of implementing Maryland’s previous cancer plan are comprehensive materials for cancer survivors about support groups and resources, as well as surveys of Maryland colleges and universities on tobacco policies and smoking cessation services.

“This is an opportunity for organizations and individuals to come together and work efficiently on a common goal,” says Platz. “With the cancer plan, we're better organized and able to help Marylanders.”

Read about Maryland’s cancer plan.

Outcomes from previous Maryland cancer plans.

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“Molecular profiling of a tumor has really taken off over the last few years, and a few years ago, it could take several weeks for these results to come back. We can now test for the changes we can target in a lung tumor within four to five days here at Hopkins,” says Russell K. Hales, M.D.

Hales, who is a radiation oncologist at the Johns Hopkins Kimmel Cancer Center on the Johns Hopkins Bayview campus, added, “There are some rare mutations that sometimes can take longer, but our goal is to have the patient's molecular profiling complete in four or five days. There are also national and international studies looking at other targets, and sometimes we participate in these, and enroll patients on studies where your tumor may be sent to other areas, in this country, or others, to further define other targets.”

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Today, the Blue Ribbon Panel of advisers for Vice President Joe Biden’s Cancer Moonshot Initiative presented a set of 10 recommendations for research opportunities worthy of investment. While these recommendations do not cover every corner of cancer research, they provide a framework for building on the progress we’ve made to help more scientists collaborate, make new discoveries in how cancers form, better predict patients’ responses to therapies and begin to erase some of the disparities that occur in cancer care. The National Cancer Advisory Board has accepted the recommendations, and I applaud the work of the Board and Blue Ribbon Panel, both led by the Kimmel Cancer Center’s deputy director, Elizabeth Jaffee, M.D. We look forward to additional discussions on implementing these initiatives. This is an important opportunity to add resources and energy to the challenge of eradicating cancer, the world’s leading killer.

--William G. Nelson, M.D., Ph.D.
Professor and Director
The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins

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“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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