Bolstered by the success of its adult Beat AML Master Clinical Trial, LLS has set its sights on changing the paradigm for drug development for children with acute leukemia. LLS has set a goal to launch a new precision medicine clinical trial for children modeled on our Beat AML trial for adults and has convened a collaboration to lay the groundwork for a study for children with acute leukemia in 2019. LLS also has committed to doubling its investment in academic research to find new treatments for children, particularly those who don’t respond to standard treatment and to alleviate the risk of long-term side effects.
Along with research, LLS is adding more services to help children and their families, including financial assistance programs and family support.
We’re proud to team up with Julie Guillot who lost her son Zach to acute myeloid leukemia (AML) in 2014. Not only has she survived, but thrived in her quest to cure AML. She is the founder of Be Strong, Fight On (BSFO), and a passionate advocate for LLS, especially for pediatric cancer cures.
Julie, along with LLS Chief Medical Officer Gwen Nichols, MD, are in a featured episode of Robin Roberts’ digital series, “Thriver Thursday,” featuring inspiring stories of hope, survival and thriving. Earlier this morning, the segment was previewed on Good Morning America (GMA) and Julie also helped raise awareness through a Facebook Live conversation one on one with Robin.
LLS is committed to providing information, resources and support to those affected by blood cancers. Speak one-on-one with an Information Specialist who can assist you through cancer treatment, financial and social challenges and give accurate, up-to-date disease, treatment and support information. Our Information Specialists are master's level oncology social workers, nurses and health educators.
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Call (800) 955-4572 to use the automated response system 24 hours a day, seven days a week. An Information Specialist will return your call the next business day. You can also listen to recorded information about LLS and our programs.
The winter months bring cold and flu season, which can take a toll on your health. While flu shots and rest are common advice for prevention, a strong immune system is critical to keeping you healthy all year long. According to Margaret Martin, RD, MS, LDN, CDE, a Registered Dietitian at The Leukemia & Lymphoma Society, “Your body’s ability to fight infection and disease depends on your immune system.”
Margaret provides one-on-one nutrition consultations for people with cancer who have a weakened immune system due to the effects of treatment, but she says keeping a healthy immune system is important for everyone. “Boosting your immune system during and after cancer treatment can help you feel better, maintain your strength, avoid treatment delays and speed your recovery. This goes for anyone fighting an illness, or preventing one.”
Margaret offers these important tips to help boost your immune system and keep it running smoothly throughout the year.
Keep a plant-based, heart-healthy menu.
Choose foods first as your source of vitamins and nutrients. Unless your healthcare team directs you to take a vitamin or supplement, you likely do not need one. The best way to include these nutrients is by eating whole foods. Make sure your meals incorporate a variety of vegetables and fruits, whole grains, legumes, beans, lean protein and healthy fats.
Eat small, frequent meals throughout the day to stay energized and to ensure your body is getting enough calories, proteins and nutrients. Protein acts as a “builder” and the body uses it to build and repair tissues. Protein is also vital for making hormones and enzymes that promote the body’s daily functions and supports a healthy immune system. In addition, drinking eight to 10 glasses of fluids every day is one of the most effective ways to flush waste from your body and support the health of your immune system.
Power up with phytochemicals.
Fruits, vegetables and other plants contain naturally occurring substances known as phytochemicals. Phytochemicals give fruits and vegetables their color and flavor. Phytochemicals act as soldiers in the immune system to protect the body from damage. Studies show that phytochemicals help support the:
* Immune system
* Creation of healthy cells
* Death of damaged cells (such as cancer cells)
Decrease your risk of malnutrition.
It can be harder for a malnourished body to fight off an illness or infection. Malnutrition results when the body does not receive enough calories and/or nutrients to promote good health and sustain healthy functioning of your body’s systems. When you’re “in the slumps,” it can be easy to avoid eating altogether. Follow these tips to reduce your risk of malnutrition during cancer treatment:
* Choose a variety of foods each week from all the food groups. Talk with your healthcare team before changing your diet. Eat regularly throughout the day, every four to six hours. Even if you do not feel hungry, try to have a snack or mini meal. If you forget to eat, try setting a timer.
* Include a protein source with every meal and most snacks.
Make changes to your lifestyle. And stick to them.
In addition to using nutrition to boost your immune system, you can also make changes to your lifestyle to help support health and immunity. These include:
Decrease your exposure to bacteria, viruses and germs.
Aim for 7 hours or more of sleep every night. If your sleep is interrupted, try a 30-minute nap during the day.
Reduce stress by taking time to do things you enjoy such as spending time with family, spending time outdoors or reading. If your feelings of anxiety or depression make it difficult for you to complete daily tasks, talk to your healthcare team.
The Leukemia & Lymphoma Society offers PearlPoint Nutrition Services to all cancer patients and caregivers, providing free nutrition education and consultations. Visit www.LLS.org/nutrition for more information.
Marlee’s story of courage, inspiration and giving back.
Marlee’s story of courage, inspiration and giving back.
My name is Marlee Pincus and I have cancer. I never in a million years thought I would say those words. Growing up, I never had any medical issues nor a significant family history of cancer. In high school I loved to run, advocate for human rights, and learn Spanish. However, my greatest focus was always on my academics. I graduated Salutatorian of my class and was eager to begin my freshman year at Cornell University.
The first three and a half weeks were absolutely amazing. I was meeting so many interesting people, learning new things, eating unhealthy foods, and staying up very late; you know, typical college stuff. After a few weeks, my friends and I caught the cough going around the dorm building. As my friends recovered, my symptoms worsened. I was developing fever, night sweats, extreme fatigue, shortness of breath etc. I attributed these feelings to the “college lifestyle.” I wasn’t planning to come home for Columbus Day weekend, but decided to for a reset. When I woke up the next morning, my mom noticed I was extremely pale and decided to take me to urgent care. They drew blood and then received a “critical values” call from the lab. I was rushed to Hackensack Hospital in New Jersey, where my aunt is a pediatric endocrinologist. After more blood tests the doctor confirmed that I had T-cell acute lymphoblastic leukemia.
Igniting my Fire
Hearing you have cancer is one of the scariest feelings. Your first thought is, “Am I going to die?” The doctor explained to me that my cancer is very treatable, but recovery takes more than two years. My whole world was flipped upside down. Here I was, not even 18 yet, always had been healthy, and thriving at college. Now that was all taken away. It felt like the ground was crumbling beneath me and I couldn’t do anything about it.
After a few days of shock, breaking the news to friends and family, and lots of tears, I was ready to fight. It’s hard to describe the feeling, but when faced with a life-threatening situation, an inner strength comes over you. I describe it best as a fire ignited within you. The fuel was always there, but there was no spark to light it. From there, you have a shift in mindset. The future from moment to moment is so unknown. Thus, you learn to be mindful of the current situation and accept things as they come. Having a positive attitude is essential. During this process, your body undergoes severe strain and adding anxiety makes your body work even harder. This is not to say that that I don’t have my moments. There are times I feel angry and upset. I wonder why I was struck with this and how my life could just be put on total pause. I always remind myself through, that regardless of why, this is my current situation. The only thing I can control is my mentality. I focus much of my energy understanding the treatment and observing new things about the world. When you open up your mind, you will be surprised by the things you learn and notice.
18 Means More than a Number
While in the hospital, I had my 18th birthday. I never thought I’d be shaving my head on my birthday, but I wanted to make it memorable. Losing my hair didn’t scare me. I knew I couldn’t watch it fall out and I wanted to take the opportunity to try new hairstyles along the way. Hair grows back. Hair does not define me.
Since my diagnosis was so close to my birthday, people kept asking what I wanted. However, besides health, there was nothing I needed. I decided instead to start a Facebook fundraiser for The Leukemia & Lymphoma Society. In the Jewish religion, the number 18 is called “chai” and it means “life”. Since I was turning 18 on October 18th 2018, I decided to ask for donations in multiples of 18. My goal was to raise $1,800 in 18 days. However, support from all over kept rolling in and in 18 days, I raised over $18,000 dollars! It was amazing to see so many people come together to support not only me, but this wonderful organization.
Finding a Greater Purpose
The fundraiser was able to reach many people because I posted on the Facebook page,facebook.com/marleeindira that my dad and I made. Here, I give updates on my condition and write personal stories. Before the fundraiser was posted, hundreds of people followed my progress. Therefore, when I posted the fundraiser, people were eager to contribute. In these situations those around you often feel helpless because they can’t do anything to fix the situation. Thus, channeling energy into donations is an easy way for anyone to help out.
Today, I continue to receive treatment at Memorial Sloane Kettering Cancer Center. I am roughly 8 weeks into treatment. It’s going to be a long road ahead, but I am determined. Of course bumps are inevitable, but with a positive attitude and a wonderful support system, I can fight this cancer. My parents and grandparents are always right by my side and nearly 500 people track my status through the Facebook. Having people rooting for you is an amazing feeling and gives you the drive to push through. Although I never thought I would be here, I am willing to take this opportunity to self-explore and gain a new perspective on life. This is something I can carry with me forever.
Your donations matter and save lives! See how you will be able to easily create your own Facebook fundraiser supporting The Leukemia & Lymphoma Society.