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Lung cancer remains the leading cause of cancer-related death in both men and women in the United States. And for America’s veterans, that risk is even higher as they are 25 percent more likely to be diagnosed with lung cancer than those who did not serve in the military.

As we recognize this year’s Veterans Day, Laurie Fenton Ambrose, President and CEO of Lung Cancer Alliance, explains how early detection and the treatment of lung cancer is evolving in and benefiting the veteran community, and what still needs to be done to improve the care for the men and women who have served our country.

Why are veterans disproportionately affected by lung cancer?

“Veterans are disproportionately affected for two key reasons: their smoking history and their occupational exposures. First, veterans have a higher prevalence of smoking than the civilian population. Many use smoking as a way to cope with the stress of their occupation and cigarettes were readily available to them while in service. At the same time, veterans were also exposed to a variety of chemicals that are linked with an increased risk of lung cancer, such as asbestos, Agent Orange, burn pits and chemical weapons.”

Why is treating veterans with lung cancer challenging?

LAURIE FENTON AMBROSE

LAURIE FENTON AMBROSE, PRESIDENT AND CEO OF LUNG CANCER ALLIANCE, IS HELPING TO LEAD THE CHARGE IN IMPROVING PREVENTION, SCREENING AND TREATMENT OF LUNG CANCER IN THE VETERAN COMMUNITY.

“Research has shown that many Veterans’ Affairs facilities are not prepared to implement comprehensive lung cancer screening programs. More work needs to be done to support the investment in infrastructure and resources to offer more coordinated care to American veterans with lung cancer as quickly as possible.

We also need to address the stigma associated with having lung cancer—which affects how the disease is both resourced and advocated for — and the comorbidities that many veterans face in addition to lung cancer.”

How is Lung Cancer Alliance working to improve care for veterans with lung cancer?

“We are working with military facilities and programs to reduce tobacco use and exposure. We are also working on awareness campaigns to alert veterans to their elevated risk for lung cancer as well as directing them to responsible screening and care so that we catch and manage the disease early.”

Why is early detection so important?

“Because it can save your life. Just like other diseases with approved screenings, you see higher survival rates in those whose disease has been caught early by screening. Now lung cancer can join this fold. Simply put, if you find lung cancer in its earliest form, you improve your treatment options and your quality of life. But right now, approximately 75 percent of lung cancers in the general population are diagnosed at late stage when there are fewer effective treatment options.

We need to highlight the benefits of screening and make sure that it is made available to our veterans. Studies have shown that low-dose CT screenings can decrease lung cancer death rates if we provide adequate resources and infrastructure. It’s key that we make sure everyone at risk—including our military community—is aware that these screenings are available to them.”

We’re at a pivotal moment right now with lung cancer screening and treatment advances, and we are seeing more lung cancer survivors than ever.

How are the efforts to improve screenings going so far?

“Screening is a fairly new preventive service. The federal government gave a green light just four years ago for coverage. So, we are now working hard to “ramp-up” this service in communities across the country. This involves bringing national awareness to the issue as well as educating providers and those at risk of the benefits and risks. We are also committed to making sure screening and care is being provided in the most responsible way in medical centers and considering how we collect information to help further improve early detection and treatment options. It is not easy. It takes time. But we are focused on moving this forward as rapidly as possible.

The challenge I see is that there isn’t the same sense of urgency and focus around lung cancer screening as we have seen with other cancers such as breast and colon. That’s likely related to the stigma around this disease. We really need more national attention on this issue.”

How are new treatment options helping patients with lung cancer?

“New treatment options for patients with lung cancer are improving care and bringing hope. For example, we have more targeted therapies and immunotherapies being paired with chemotherapy to treat lung cancer today than we have had in decades.

When you combine these new therapies with the ability to detect lung cancer earlier, outcomes can be more favorable for early stage patients. This one-two punch is making a dent in the high mortality rates. We’re seeing five-year survival rates rise to 19 percent; a leap forward from where we were in the 1980s, when five-year survival was only 13 percent. We’re at a pivotal moment right now with lung cancer screening and treatment advances.”

What else should veterans know about lung cancer?

“No veteran should ever feel alone. We are ready to support them. That’s what Lung Cancer Alliance is here to do. Veterans should know that there’s a place where they can go to feel part of the community and find information. We are honoring their service by making sure our service is there for them.”

To learn more about how researchers are developing new treatments strategies for lung cancer, read “Hitting Moving Targets in Lung Cancer Subtypes.”

In August 2005, Amelia List celebrated her first birthday, and her mother Julie breathed a sigh of relief. She had feared Amelia would develop severe food allergies, as her five-year-old sister Autumn had, by the time she turned one. But it was so far, so good.

Unfortunately, everything went downhill from there, Julie recalls. A month later, the entire family got the stomach flu. Everyone recovered well except for Amelia, whose vomiting and diarrhea continued. Six weeks later, she had lost 20 percent of her body weight. Julie and her husband took their daughter to a gastroenterologist, who diagnosed Amelia with eosinophilic esophagitis.

Having already joined several food allergy forums online, Julie knew what that meant. Eosinophilic esophagitis was not your typical allergic reaction to food. She turned to her husband. “We’re going to be one of those people whose kid can only eat one or two foods,” she told him.

More than 150,000 children and adults in the United States live with eosinophilic esophagitis, a relatively new disease that was only first recognized in the 1990s. There are currently no FDA-approved pharmaceuticals to treat EoE. Symptoms may be managed with elimination diets and other methods. Julie is sharing their story to raise awareness of the disease, with the hope that more can be done to improve their daily struggle.

Identifying Triggers

Julie knew eosinophilic esophagitis was not a typical food allergy, but she was stunned when their local gastroenterologist told them that he could only diagnose but not treat the condition. In fact, at that time, there was no doctor near their home in South Carolina who treated this rare disease. For the next four years, the family traveled eight hours to Cincinnati to see a specialist whenever necessary.

The doctor explained that proteins in the foods Amelia was eating were triggering a type of white blood cell called eosinophils to inflame her esophagus. This inflammation led to her vomiting, difficulty swallowing and recurring stomach pain.

Amelia underwent food trials to identify her food triggers, eating one or more foods at a time for two months to see whether they made her sick. If they didn’t, she’d get an endoscopy to check her upper digestive tract for inflammation. Her doctor would put her under anesthesia and insert a flexible tube with a camera into Amelia’s upper digestive tract.

Her doctor also took six to ten biopsies throughout the esophagus to determine if eosinophils were present. “The biopsies can reveal if eosinophils are present and causing damage that is not visible to the eye,” Julie said. “We never knew if food was safe until the biopsy results were returned.”

She went through this process with a dozen foods. To get her required nutrition, Amelia was given an amino-acid based formula through a gastric feeding tube. “The formula had no proteins that would trigger allergies, but it tasted terrible,” Julie said.

We never tell them they can’t do anything.
We’ve tube-fed Amelia while hiking.

Overcoming Setbacks

In 2007, the List family received more devastating news when their middle child, Abby, was diagnosed with eosinophilic esophagitis at the age of six. Studies have shown that siblings of someone with eosinophilic esophagitis are at increased risk for the disease, suggesting a role for genetic factors. Environmental factors are also thought to have a role.

Then in 2016, Amelia had a severe, life-threatening allergic reaction to white rice, her first allergic reaction unrelated to her eosinophilic esophagitis. Her immune system reacted, and Amelia soon found she could no longer eat any of the foods she previously tolerated.

Amelia resumed consuming formula through the gastric tube but then started reacting to that, too. To help tolerate the formula, she takes medication twice a day. She once again began food-testing with endoscopies to validate new safe foods. Since her initial diagnosis, Amelia has had 32 endoscopies and counting.

Today, she continues to consume formula, but it is not her sole source of nutrition. She can eat seven foods: apples, sweet potatoes, kidney beans, soy, millet flour, turkey and black olives. “For sure, you get sick of them, but I just have to keep eating them,” Amelia said. “I really don’t have any other choice.”

Growing Up Quickly

Amelia has been administering her own tube-feedings since she was a kid. Now 14, she has it down to a science. She eats this way three times a day, and she takes her equipment with her everywhere, plus the formula and water to mix.

Amelia reminds herself not to let eosinophilic esophagitis hold her back from living the life she’s dreamed of living. “It’s part of you, but it doesn’t control you. It’s not who you are,” Amelia said.

Going out—whether to school, on a field trip, to a friend’s house or on vacation—requires planning. If she goes to a party or sleepover, she brings a can of olives or a sweet potato in case she gets hungry. Sometimes, of course, she chooses to forgo events if she decides that they’re not worth the effort.

“We never tell them they can’t do anything,” Julie said. “We’ve tube-fed Amelia while hiking. But they definitely analyze situations ahead of time, which most kids don’t have to think about. These kids are very responsible and have to grow up quickly.”

To learn more about how Celgene is committed to supporting research for rare diseases, read Supporting Research to Find Cures for Rare Diseases.

While understanding the impact of myelodysplastic syndromes (MDS) on the lives of people diagnosed with these blood cancers can help inform their care, assessments of quality of life in MDS have been, for the most part, lacking.

But a recent survey commissioned by the MDS Foundation, Inc. is helping to fill that gap, to shed some much-needed light on the experience of patients and their caregivers. According to the results, many people with MDS surveyed said that fatigue had a significant impact on their daily lives.

“The number one complaint that we hear, by far, from patients with MDS is that they don’t have the energy to do the things that make them feel like they’re living,” said Tracey Iraca, executive director of the MDS Foundation, which is raising awareness of quality-of-life issues during this year’s MDS World Awareness Day. “There are so many little things we take for granted that these people struggle with.”

A Closer Look at the MDS Symptom of Fatigue

Tracey Iraca

TRACEY IRACA, EXECUTIVE DIRECTOR OF THE MDS FOUNDATION, INC., BELIEVES A BETTER UNDERSTANDING OF HOW MYELODYSPLASTIC SYNDROMES AFFECT PATIENT LIVES IS THE FIRST STEP TOWARDS IMPROVING THE MANAGEMENT OF THE DISEASE.

The fatigue and tiredness that people with MDS experience interferes with their daily activities, according to the survey. Patients surveyed reported that they often struggled with tasks such as cooking, cleaning, shopping, climbing stairs and taking care of their pets. Several respondents said that they relied on other people to complete many of those chores.

“My house is not nearly as clean since [I was diagnosed with] MDS,” one person responded. “I am exhausted a lot of the time. I can only work short times, and I have to sit down—then I usually fall asleep.”

Some people reported feeling tired all day, every day, while others only experienced exhaustion in the afternoon. Some also said that naps in the afternoon had become a necessity in their everyday life.

Fatigue drains people with MDS not only physically but emotionally, according to the survey. People with MDS reported losing patience with themselves and worrying about their loss of independence. Several also said they experienced feelings of isolation and loneliness from not being able to visit their family and friends.

Why Fatigue Is a Symptom of Myelodysplastic Syndrome

It didn’t surprise Iraca that fatigue was of significant concern for people with MDS. She has heard it dozens of times over the past decade at the Foundation. And she understands why.

In MDS, the bone marrow doesn’t produce enough healthy red blood cells, which transport oxygen to different cells and tissues. Young red blood cells are then inhibited from properly maturing, caused by what is known as erythroid maturation defects.

“The normal development of all blood cells is a complex process that relies on both stem cells and the environment within the bone marrow,” explained Sandra Kurtin, board member of the MDS Foundation, assistant professor of clinical medicine and assistant professor of nursing, The University of Arizona Cancer Center. “This process goes awry in MDS due to a variety of issues.”

As a result of this ineffective development of red blood cells, up to 90 percent of people with MDS have low red blood cell counts, a condition known as anemia. Without enough healthy red blood cells to transport oxygen, it leaves people feeling continuously tired and weak throughout the day.

“Patients are becoming much more aware of what’s happening—they are learning to talk with their doctor about their fatigue and other symptoms of anemia.”

Managing MDS Linked Anemia

Understanding how MDS affects the daily lives of people is the first step toward improving care for the thousands living with this disease. When people with MDS, doctors and caregivers discuss the complete patient experience, they can address what matters most.

“Patients are becoming much more aware of what’s happening—they are learning to talk with their doctor about their fatigue and other symptoms of anemia,” Iraca noted. “We want to educate people to identify these symptoms earlier on so that they can get treatment sooner for anemia.”

People with MDS may receive red transfusions to raise their low blood counts and antibiotics to prevent or fight infections. Some people may also receive a bone marrow transplant, chemotherapy, or other treatment options. Iraca is hopeful that research will help us learn more about the disease and how to treat it.

“Researchers are working to identify genetic defects in MDS so that they can develop therapies to target them,” Iraca said. “The research that’s happening now makes us hopeful.”

To learn about the high unmet need for people with MDS, read “Why I Advocate for People with Myelodysplastic Syndromes.”

What’s on the outside can often distract us from what’s happening on the inside. For people with plaque psoriasis, that can mean treating their outer symptoms, but sometimes their treatments aren’t addressing the deeper problem within.

On this year’s World Psoriasis Day (October 29), it’s time to gain a better understanding of psoriasis: an autoimmune condition that causes an overactive immune response. It’s this immune response that causes the rapid growth of skin cells, leading to red, raised, itchy and scaly patches. By understanding this, people with psoriasis can better understand all of their possible treatment options.

 
To learn more about plaque psoriasis and available treatment categories, visit DeeperLevelPSO.com

Never judge a book by its cover: for TV host and fashion journalist Louise Roe and the millions of people living with psoriasis in the United States, it is more important than ever to understand this chronic condition.

Roe has teamed up with Celgene to launch INSIDE PERSPECTIVE, a campaign that aims to raise awareness about plaque psoriasis – an autoimmune condition that appears on the surface of the skin but starts inside the body.

While working at a fashion magazine in London at the age of 25, Roe was diagnosed with plaque psoriasis. Initially, she struggled with the diagnosis and managing the condition – planning her wardrobe and work events around hiding plaques on her skin.

“It was quite tough for me at first given the fashion industry is very focused on outward appearances,” said Roe. “At times, when the symptoms were too severe to hide, I canceled plans and social events – it definitely affected my confidence and my life in general.”

After working with her dermatologist, she was able to better understand plaque psoriasis and found ways to help manage the symptoms, all while building a successful fashion career as a journalist, author and blogger. Because of her personal experiences with her condition, Louise is speaking out to further educate the psoriasis community to treat the condition from within.

Through INSIDE PERSPECTIVE, Roe also had the opportunity to swap worlds for a day with Alycia, one of her fans who lives with moderate to severe plaque psoriasis. Their experiences are chronicled in an inspiring video where they share heartfelt insights about living with the condition, as well as the importance of looking beneath the surface and embracing who they are both inside and out. The full story and video can be viewed at www.PsOPerspective.com.

“What I’ve learned through this experience is that there’s always more to the story,” said Roe. “By opening up about my experience, I hope the campaign will help inspire and empower others.”

Louise is one of the estimated 7.5 million people in the United States living with plaque psoriasis—an autoimmune disease that appears on the skin as red, itchy patches that starts inside the body. Though often seen as a skin condition, plaque psoriasis can have both a physical and an emotional impact on those living with it.

To learn more about the INSIDE PERSPECTIVE campaign and Louise’s personal story, visit www.PsOPerspective.com.

Although survival rates for blood cancer have improved over the past decade, it remains the third deadliest type of cancer in the U.S. That’s why supporting blood cancer research is so crucial, according to Louis J. DeGennaro, Ph.D., president and CEO of The Leukemia & Lymphoma Society.

“About 25 years ago, a handful of Leukemia & Lymphoma Society volunteers in Minneapolis wanted to organize a family-friendly walk at dusk to celebrate cancer survivors and their supporters. That walk evolved into Light The Night, which now takes place in over 200 communities across the United States and Canada.

We also now recognize people we’ve lost to blood cancer, as well as survivors and supporters. At each walk, you’ll see red, white and gold lanterns. The red lanterns recognize supporters, the white lanterns are for survivors and the gold lanterns are to remember those we’ve lost.”

How is the money raised from an event like Light The Night spent?

LOUIS J. DEGENNARO

LOUIS J. DEGENNARO FROM THE LEUKEMIA & LYMPHOMA SOCIETY BELIEVES THE LIGHT THE NIGHT EVENTS REMAIN AS IMPORTANT AND AS MOVING AS EVER.

“These walks are a major fundraiser for The Leukemia & Lymphoma Society. Last year, we raised $60 million to support our research, patient services and advocacy work.

Research has always been the bow of the ship for The Leukemia & Lymphoma Society. We were founded 70 years ago by a father and mother who lost their son to leukemia, and their mission was to raise funds to support research and find a cure. The investment is paying off: the U.S. Food and Drug Administration (FDA) approved 18 therapies for blood cancer last year. To put that into perspective, a good year would involve the FDA approving two new blood cancer therapies.”

With all these advances, why is fundraising still so important?

“For starters, some blood cancers are stubbornly resistant to treatment. For example, acute myeloid leukemia (AML) is a commonly diagnosed cancer, but we hadn’t seen advancement in survival rates for 30 years, until four new approaches were approved by the FDA between 2017 and 2018. Without continued investment in research, those new treatments would not have been developed.

There’s also an even more important reason for continuing this support: when you make an advance in blood cancer research, it may benefit other cancers as well. About 40 percent of all cancer therapies approved by the FDA since 2000 were first approved to treat blood cancers.”

CAR T cell therapy has the potential to help people with certain types of blood cancer and is in early testing for other types of cancer.

What are some of the promising treatment approaches that The Leukemia & Lymphoma Society is investing in?

“We’re very keen on immunotherapy. In fact, we’ve contributed $40 million to research since 1998 for an immunotherapy called chimeric antigen receptor (CAR) T cell therapy, which reprograms immune cells so a person’s immune system can fight the blood cancer. CAR T cell therapy has the potential to help people with certain types of blood cancer and is in early testing for other types of cancer, including colon, ovarian and lung cancers. We’re also excited about targeted therapies, which are designed to go after specific, bad-acting genes.”

Light The Night Helps Lead the Way for Blood Cancer Research

Why are Light The Night walks so meaningful to you?

“A few years ago, I attended a walk in Minneapolis at the major league baseball stadium. I was walking around that stadium at dusk, carrying my red lantern and walking beside folks carrying gold lanterns for loved ones that they have lost to blood cancer. Suddenly, the outfield gate opened and hundreds of survivors carrying white lanterns came walking onto the field.

Then, a child survivor broke out from the pack and started running around the stadium. I was in tears. That moment felt emblematic of the progress we’ve made – and how quickly we’ve made it. That child, and all the people at these walks who carry those white lanterns, are a symbol of the success of our work. There are a growing number of white lanterns every year. It’s truly moving.”

To find a Light The Night event near you, visit The Leukemia & Lymphoma Society’s Light The Night website.

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At 6:21 p.m. on September 18, 2016, the sun was beginning to set in New York City, and Eric Gelber started his final lap around Central Park. A crowd of supporters were running with him and cheering him on, and cowbells were ringing along the race course. Every step was painful. When he finally crossed the finish line, he broke down and kissed and hugged his wife. He had just run 200 miles and raised over $320,000—bringing his lifetime fundraising total to more than $1.1 million and moving us one step closer to a cure for multiple myeloma.

But for Gelber, the journey is not over yet. Now, he’s inviting other runners from the New York City area and beyond to join him on The Journey Towards a Cure initiative by taking part in a 12-hour endurance run/relay on October 6, 2018, to support the Multiple Myeloma Research Foundation (MMRF).

In anticipation of this new chapter in a personal journey he started more than a decade ago, Gelber explains what keeps him coming back to this cause, how this year’s event will be different than his previous efforts and why it remains vital to support multiple myeloma research.

What did it feel like to finally achieve that 200-mile run?

“It was unbelievable. I was somewhat out of it when I finished, but it felt like a dream. After two failed attempts, it was an amazing feeling to fulfill that goal. I was thinking of what all the people on my support team and I had just accomplished. Together, we pushed our cumulative fundraising total to over $1.1 million.

I’m not sure what would have happened if I did not complete all 200 miles. I decided it would be my final attempt before I did it. The following year, a documentary was released at the Tribeca Film Festival to tell my story and the stories of my friends who have been affected by multiple myeloma. I hope our story inspires more people to support this effort.”

ERIC GELBER AND HIS WIFE DISCUSS HIS PROGRESS AFTER COMPLETING 176 MILES DURING HIS FINAL ATTEMPT TO RUN 200 MILES IN SUPPORT OF THE MULTIPLE MYELOMA RESEARCH FOUNDATION IN 2016.

What kept you coming back year after year to push yourself to your limits and raise money for multiple myeloma research?

“Over time, this became a massive part of our lives, and I keep coming back because I want to do as much as I can to support the MMRF.

I’m not a scientist. I’m not a doctor. But I can run, and I can fundraise. That’s my way of getting us one step closer to a cure for multiple myeloma.”

This year, you are encouraging others to run a 12-hour relay race. Why did you feel it was time to change the event?

“This year, there is a different format. I wanted others to feel like they were actively helping the cause as well. An event that gets people to come out and push themselves—either solo or in a team—expands the idea of building a community. I didn’t expect it would take this format, but it was time to evolve.

There will be the race followed by a celebration with food, kids’ activities and a music festival with four live bands. It’s important to give people a reason to come together, share their stories and celebrate life in a fun atmosphere. I’m looking forward to this new chapter.”

What advice do you have for someone who wants to get involved with this year’s event?

“If you’ve never run a race before, be cautious and set achievable goals. Pace yourself so you avoid getting injured. There is an athlete in all of us, but you don’t have to run for 12 hours. You can a join a five- or 10-person relay team and run for as long as you can. As long as you’re challenging yourself, there’s a lot to be proud of.

If you are unable to run, there’s the option to walk a loop on the course. We also need volunteers to help direct traffic, register participants and manage aid stations. All of that is critical to making this event possible.”

One of my friends has been living with multiple myeloma for 20 years. Part of that is because there are more treatments available now. It’s very encouraging.

How do you feel about the progress made in the treatment of multiple myeloma over the last decade?

“I see progress in the faces of my friends who have multiple myeloma. They’re living longer. One of my friends has been living with multiple myeloma for 20 years. Part of that is because there are more treatments available now. It’s very encouraging.

There’s still a considerable amount of work to be done. We still don’t have a cure. That’s why we’re opening the event to a broader audience. I’m still learning about organizing and putting together an event as big as this. But sometimes you have to go for it and try—just like attempting to run 200 miles. You take it one step at a time.”

To learn more about the upcoming The Journey Towards a Cure event, visit The Journey Endurance Run/Relay website.

It wasn’t easy the first time. When Kimberly Jewett was 31, she found herself listening to a doctor explain what her breast cancer diagnosis meant and what her treatment options were. But at that moment, Kimberly was thinking less about herself and more about her daughter Kalli and her son Tyler, who were 6 and 4 at the time.

“I was in shock,” Kimberly recalled. “All I could think was, ‘How do I tell my children?’”

Answering that question wasn’t any easier the second time around. Four years after Kimberly survived her first battle with breast cancer, the disease came back as metastatic breast cancer that had spread to other parts of her body. Although she knew that three out of four women who are first diagnosed with an early-stage breast cancer eventually progress to metastatic breast cancer, it was still shocking news. Her outlook was significantly less hopeful: while 90 percent of women with breast cancer are alive five years after being diagnosed, only 36 percent of women with metastatic breast cancer survive that long.

Meanwhile, her children were also older. At 8 and 10, they had a better understanding of life and death, making the experience even scarier for them. They began asking difficult questions. When they asked if she was going to die, Kimberly didn’t know what to say.

Kimberly is one of the 266,000 women each year who have to come home from the doctor’s office and tell their families that they have breast cancer. These conversations are never easy. They can be even more difficult when young children are involved, which happens frequently; an estimated 30 percent of all breast cancer in women under the age of 45 is diagnosed within a few years after giving birth.

Now in remission once again, Kimberly is teaming up with her daughter Kalli to share their stories to help other families better navigate the difficult conversation and emotions that come with a breast cancer diagnosis.

WHEN KIMBERLY JEWETT (CENTER) WAS DIAGNOSED WITH BREAST CANCER, SHE HAD THE DIFFICULT TASK OF EXPLAINING HER DISEASE TO HER CHILDREN TYLER (LEFT) AND KALLI (RIGHT).

Honesty, the Best Policy

The fact that conversations may be difficult doesn’t mean they should be avoided, according to Kimberly. When she was diagnosed, her initial instinct was to protect her children from the news. But she quickly realized that keeping her disease a secret would damage her relationship with them and undermine the trust she wanted in her family.

Her kids would have eventually found out anyway, Kimberly figured, which might have distorted the truth and amplified their fears. So she believed that it was better that they heard the truth from her.

“It was also hard to shield my kids from my diagnosis because I was so emotional all the time,” Kimberly said. “My husband and I decided to tell them once my diagnosis was finalized and we knew my treatment plan.”

Looking back, Kimberly believes that one of the best things she did for her children was to be open and honest with them. By sharing her feelings with her kids, she opened the door for them to share their questions and fears with her.

“They came to me with a ton of questions, like, ‘Are you going to be okay?’ and ‘Am I going to get it?’” Kimberly said.

Sometimes, she admitted to them that she didn’t have all the answers, and that was ok. She told them that she wasn’t sure what would happen and what that meant for their future. But she assured them that whatever happened, they would find the answers together.

We continue to talk about what would happen if my breast cancer came back. All we can do is remain hopeful and continue to pay it forward by inspiring others and sharing our story.

Preparing for Difficult Conversations

Kimberly felt like she had no one to turn to for advice on breaking the news to her children. No friends or family members had gone through similar situations, and she wasn’t involved with any cancer support groups at the time.

So she started searching online for information. She found a comprehensive guide on BreastCancer.org on how to talk to children of all ages and bought children’s storybooks specifically dedicated to breast cancer. These resources were helpful in having those difficult conversations with her children.

Having now had these conversations twice with her kids, other mothers are turning to Kimberly for advice. She highly recommends an app called The Magic Tree for Breast Cancer, developed by Celgene, as a starting place. The app explains the disease in a kid-friendly way so mothers don’t have to navigate the conversation alone, according to Kimberly. It incorporates videos and games that help to answer difficult questions such as, “What is cancer?”, “Did I cause this?”, and “Can you catch it?”

“I remember reading my kids a book about a booboo on a mom’s breast, but the app does this in a video that is much more engaging for them,” Kimberly said.

Kalli—now 16—agrees. “We were so young, we didn’t understand what was truly happening. An app like this would have definitely been helpful for us.”

THE MAGIC TREE IS AN APP CREATED BY CELGENE SPECIFICALLY FOR CHILDREN AGES 5-8 WHO HAVE A LOVED ONE WITH BREAST CANCER. THROUGH ANIMATED VIDEOS, GAMES AND DISCUSSION GUIDES, THE APP EXPLAINS WHAT CANCER IS, HOW IT AFFECTS THE BODY, AND OFFERS TIPS ON HOW TO DISCUSS TREATMENT.

Silver Linings

Kimberly said that because her kids understood what she was going through, they felt like they were part of her support system. They wanted to help her and, in the process, formed a deeper bond with their mother. Kimberly’s battle with breast cancer became a shared experience in their family.

“I wanted to take care of my mom as best as I could,” Kalli said. “She was always sitting in the same chair, tired and exhausted from her treatments. I would ask if she needed anything. I remember bringing her ice cream or whatever she asked.”

Her experience as one of her mother’s caregivers and witnessing cancer’s devastating toll firsthand certainly made a lasting impact on Kalli, who is now considering a career in oncology.

Having those difficult conversations helped to put everything into perspective for the Jewett family. Kimberly found incredible joy in sharing little moments with her children—such as watching Tyler pitch a 60-mph fast ball in a baseball game and taking Kalli to her first high school dance.

While the Jewett family are enjoying their busy lives together, they know that there’s a chance that Kimberly’s breast cancer could come back one day. “We continue to talk about what would happen if my breast cancer came back,” Kimberly said. “All we can do is remain hopeful and continue to pay it forward by inspiring others and sharing our story.”

HAVING THOSE DIFFICULT CONVERSATIONS HAS HELPED THE JEWETT FAMILY RECOGNIZE THE IMPORTANCE OF ENJOYING THE LITTLE MOMENTS IN LIFE SUCH AS TYLER’S BASEBALL GAMES.

To help facilitate conversations about breast cancer such as the ones that Kimberly had with her children, Celgene has launched The Magic Tree mobile app with input from patient advocacy groups and clinical experts. The Magic Tree is an educational interactive app with videos and activities designed to help families and their children (ages 5 to 8) to have meaningful and open discussions about a breast cancer diagnosis. The app is available for download in the United States on both Apple and Android devices.

A non-Hodgkin lymphoma diagnosis can come with many uncertainties, especially for patients with subtypes that remain chronic and incurable. Patients may feel anxious about not knowing when their lymphoma may progress or how their treatment may impact their lives. As a result, more than one-third of survivors experience symptoms of post-traumatic stress disorder.

Those uncertainties can make navigating diagnosis and treatment emotionally crippling. But a doctor who acts as a partner in their lymphoma care—educating patients on therapeutic options and supporting them throughout their treatment—can make all the difference in building confidence in their patients.

With that in mind, the theme of this year’s World Lymphoma Awareness Day, recognized on September 15, was “Small Things Build Confidence.” In recognition of this campaign, Dr. Nathan Fowler, associate professor at MD Anderson Cancer Center, discusses why taking the time to ensure people with lymphoma understand their therapeutic options can go a long way in strengthening their confidence in their treatment decisions.

DR. NATHAN FOWLER FROM THE MD ANDERSON CANCER CENTER BELIEVES IT IS IMPORTANT THAT PATIENTS WITH LYMPHOMA BUILD A HEALTHY PARTNERSHIP WITH THEIR DOCTORS.

How does understanding of their therapeutic options help lymphoma patients build confidence in their treatment?

“When people living with lymphoma understand their treatment options, they are better prepared to navigate what’s best for them. Fortunately, patients have multiple treatment options for lymphoma, and their participation in the decision-making process is important. They should be aware of the risks and benefits of any treatment that they’re starting.

There’s also a psychological benefit of understanding the path ahead, the chances of success and having confidence in the treatment choices made. From my observations, patients who approach treatment with understanding and confidence are less stressed and are in a better place psychologically.”

How important is the doctor-patient relationship to addressing uncertainties and building confidence for lymphoma patients?

“It’s paramount that patients feel their doctor is going to be a partner in their care throughout their entire treatment journey. Today, many patients take it upon themselves to search the internet and learn all that they can about their disease. But, they should also feel comfortable coming to their doctor with questions when things just don’t make sense. They shouldn’t feel like they have to figure it out all alone.

I’ve grown quite close to many of the patients I have treated over the years; I know details about their families, their friends and their lives. In fact, the close relationship that I’ve forged with my patients is one of the rewarding parts of being an oncologist.”

What are some common questions that your patients with lymphoma ask you?

“The most common question I get asked is ‘am I going to die from this?’ Patients also have concerns about treatment side effects, insurance coverage of their treatment and how the disease will affect their work and their families.

The best way to address these concerns is to be very honest and discuss both the good and the bad. While survival rates for lymphoma are generally increasing with new treatment options, some subtypes of non-Hodgkin lymphoma have varying outcomes for patients and remain incurable.”

Why is it important for patients with lymphoma to know their subtype?

“The more we learn about the over 80 different subtypes of lymphoma, the more we learn how dramatically different they are from each other. These diseases behave differently and respond differently to various treatments, which is why patients should have a basic understanding of their subtype.

Knowing their subtype is critical to balancing the risks of therapy against the risk of the disease. This information needs to be factored into a patient’s decision for treatment.”

What are some of the concerns that patients have about their treatment options?

“Almost every patient I see in the clinic has concerns about their treatment. I spend a great deal of time talking about how each treatment works. When a patient feels like part of the decision-making process, they can be more confident when they start their cancer treatment.”

It’s paramount that patients feel their doctor is going to be a partner in their care throughout their entire treatment journey.

After a patient has been treated, how do you address their concerns about their cancer returning?

“When a patient finishes treatment, they still need to see their doctor frequently. Return visits not only allow many of our patients’ questions to be answered but also allows us to monitor their progress and determine if their disease may have returned. Regular follow-up visits help reassure patients that multiple options exist should their cancer return, which can help relieve a patient’s concerns while furthering the doctor-patient relationship.”

To learn more about advances in lymphoma treatment, read “The Many Faces of Lymphoma.”

Disclosure: Dr. Fowler has received research funding from and is on a scientific advisory board of Celgene.