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Young Adult Patients Bond Over a Shared Diagnosis

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By Lisa Belanger and Carolyn Ridge 

Carolyn and Lisa

Carolyn and Lisa

One of the most challenging aspects of having cancer is finding someone you can relate to. And who better to understand you than another cancer survivor? This is our story of cancer and friendship.

Lisa’s Story: I was diagnosed with ovarian cancer at the ripe age of 29 on Sept. 12, 2011, upon waking up from surgery to remove what was thought to be a benign ovarian cyst. I was in my final semester of graduate school and nearly a year into the most serious long-term relationship of my life. I had plans to advance my career, settle down with the man I loved, and eventually start a family. Suddenly, those dreams were flipped upside down with three little words: “you have cancer.”

Within a matter of weeks, I started chemotherapy and managed to finish my last semester of my MBA at Boston University, but as my fellow graduates were moving on to bigger and better things with their careers, I was at home, throwing up while my mom made me toast. My boyfriend stuck by my side, but our dream of having a family someday has been challenged as I underwent a full hysterectomy in May 2012. I chose not to harvest my eggs as my doctors advised it would be too risky to delay treatment given the size of my tumor – as large as a grapefruit.

Carolyn’s Story: I was diagnosed with ovarian cancer on June 1, 2012, at the age of 30. While spending the summer in Massachusetts on break from nursing school in Nashville, I began experiencing symptoms of a urinary tract infection. One doctor’s visit, a CT scan, and four days in the hospital turned my world upside-down. Those three little words, “you have cancer,” reversed my role from caregiver to patient as I took a medical leave from nursing school to focus on my treatment. I immediately had surgery before undergoing six months of intense chemotherapy, and was given the “all clear” on Dec. 6, 2012.

Our Story: We met in the spring of 2013 at the young adult cancer support group hosted by Dana-Farber’s Young Adult Program. It was there our friendship blossomed.

We both started attending the support group regularly and quickly learned it was our age, rather than our diagnosis, which helped us connect with other patients. We found in the support group a handful of people to talk to (and cry with – oh boy, did we cry!) about the issues consuming us as 30-somethings trying to find our way in life. We understood each other in ways non-cancer friends couldn’t and would never be able to.

In each other we found someone who had her young life paused, too, along with the same rare, pre-menopausal ovarian cancer diagnosis. We shared not only the same fears and uncertainties about cancer, but also the physical symptoms and side effects. Our friendship began by comparing notes on our treatment plans, what hormone therapy we were taking, our surgery scars, hair loss, and the loss of our fertility (pregnancy was something we had both yearned for as young women). But soon our conversations leaned more towards what other 30-somethings talk about: relationships, dating, jobs, school, family, clothes, cooking. We stopped being cancer friends and started being friends. We grabbed dinner and drinks, sent each other birthday and Christmas cards, even planned a weekend away in Las Vegas together. Sure, cancer is still a topic of conversation, but it’s not the only topic, and it certainly isn’t the most important. And if there is a silver lining to the cloud that is this journey to Hell and back, it is our friendship, and for that we are forever grateful.


Five Tips for Staying Safe in the Sun

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Jennifer Lin, MD

Jennifer Lin, MD

As summer heats up, many people will be heading to the beach to escape the hot temperatures. But before you spend time in the sun, Dana-Farber dermatologist, Jennifer Lin, MD, has a few tips to protect your skin and lower your risk of developing skin cancer:

1. Do not use tanning booths

Don’t hit the tanning bed for a “base tan” before you hit the beach. Tanning booths contain UVA rays, which can raise the risk for developing melanoma, the rarest and most aggressive form of skin cancer. Getting a base tan won’t stop you from burning at the beach, either.

2. Use protective clothing

It’s easy to forget sun block at home, or forget to reapply. Hats and long-sleeved clothing often beat reapplying sunscreen.

Protect yourself with a wide-brimmed hat or baseball cap, and don’t be afraid to wear long sleeves or cover-ups. Wear sunglasses to protect your eyes from the sun as well.

3. Know your skin

It’s important to know your skin tone; some people are not meant to spend excess time in the sun. Fair-skinned people (freckles, blue eyes, red hair, and white skin) are at a higher risk of burning and should be extra careful in the sun.

Sunburns, particularly blistering sunburns in your youth are associated with an increased risk of developing melanoma.

4. Apply sunscreen

Use a sunscreen with an SPF of 30 or higher and reapply every two hours. It’s also important to reapply after excessive sweating or swimming.

Most people also don’t put on enough sunscreen. A shot glass (two tablespoons) of sunscreen is needed for your face and exposed areas of the skin. If you are using a spray, use enough to get an even coating, and rub in to prevent missed spots. Apply chemical sunscreens 15 minutes prior to sun exposure as these sunscreens work better when absorbed.

5. Avoid excessive exposure

The sun is strongest between the hours of 10 a.m. and 4 p.m. Don’t spend excessive amounts of time in the sun during those hours. If you do spend a long time outside, make sure to use sun block and reapply every two hours.

If you are planning a beach day, try to go later in the day when the sun isn’t as strong and harmful. Also, find an umbrella, cover up and go inside during the middle of the day.

“Be smart about your sun exposure,” Lin says. “Do the activities that you love to do but minimize exposure by performing the activities in the early morning and evening when the UV rays are less intense.”

Join us at Revere Beach on August 4 as we support the Blum Family Resource Center Van during our #CareCoverCommit campaign to promote sun safety.

How Exercise Can Help Neuropathy

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SOG_1888_13-2For many patients treated with chemotherapy, peripheral neuropathy can be an uncomfortable and sometimes dangerous side effect. The condition, which includes tingling or loss of sensation in the arms or legs, can increase risk for falls and fall-related injuries.

To help prevent and ease these problems, Dana-Farber exercise physiologist Nancy Campbell, MS, recommends patients use low-impact exercise routines like finger taps, calf stretches, and ankle rolls. These exercises help increase blood flow to the peripheral nerves, restoring feeling in the extremities. The routines also build strength and improve balance, which can lead to fewer falls.

View Campbell’s presentation below for more information on how exercise may help ease or prevent neuropathy, including step-by-step instructions for helpful exercises:

What to do if Your Child Relapses

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Barbara Degar, MD

Barbara Degar, MD

Relapse is a word any cancer patient dreads, but for parents of children with cancer, fear of the cancer coming back can be acute. Yet, “a cure is possible for many patients whose cancer returns,” says Barbara Degar, MD.  “We approach the second experience with the same rigor we brought the first time, and come up with the best strategy to achieve a second remission.”

About 15-20 percent of children with acute lymphoblastic  leukemia (ALL) will relapse, 40 percent of children with acute myelogenous leukemia (AML), and 50 percent of children with neuroblastoma. In some cases, treatment the second time around includes a stem cell transplant.

“Once your child is in remission, you hold your breath every time you go back for blood tests,” says Deanna Abrams, whose daughter Tatyana was diagnosed with AML at age 10. Eight months after she finished treatment, her cancer returned.

If you learn that your child has relapsed, here is some advice from Abrams:

  • Realize that you are now an expert. You and your family have done this before. You are on familiar ground. You understand cancer, hospitals, side effects, and supportive resources.

    Tatyana Abrams and her mom, Deanna

    Tatyana Abrams and her mom, Deanna

  • Accept help. When we went through cancer the first time, we received many offers of help from friends and family, and we turned them down. This time we said, “Bring on the food.”
  • Draw inspiration from your child. Children are naturally hopeful. When they wake up every day they try again, no matter what happened to them the day before. They don’t hold onto anxiety the way adults do. When Tatyana learned she had to go back to the hospital, she said “Now I can get what I want from the cafeteria.” Her nurses welcomed her back with open arms.

Tatyana Abrams went into remission and survived her stem cell transplant and several complications. Now 16, she has just completed a full school year – the first year in five that was not interrupted by cancer.

Research Advances Hold Promise for Multiple Myeloma Treatment

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Multiple myeloma is one of the most compelling examples of a cancer in which research has markedly improved the length and quality of patients’ lives in the last decade. A malignancy of certain white blood cells in the bone marrow known as plasma cells, myeloma is still considered incurable, but treatment advances have significantly improved survival. Not long ago, patients with myeloma lived a median time of two to three years after diagnosis. Today, median survival is seven to 10 years, although this can be unpredictable, with some patients living longer and others surviving for significantly shorter time periods.

(From L-R) Ken Anderson, MD, Paul Richardson, MD, and Nikhil Munshi, MD

(From L-R) Ken Anderson, MD, Paul Richardson, MD, and Nikhil Munshi, MD, of Dana-Farber’s Multiple Myeloma Program

Scientists have gained a better understanding of the basic biology of the disease, particularly of the way myeloma cells interact with their “microenvironment,” the web of cells and tissues that surround them. This has enabled investigators to devise new ways of interfering with the cancer process – of cutting off myeloma cells’ access to nutrients and of jamming the chemical signals that spur the cells’ growth.

Here are some recent advances:

Researchers are testing drugs that block various growth factors produced by bone marrow support cells that stimulate the growth of myeloma cells, as well as blocking the pathways that trigger these interactions, which include both novel agents (so-called small molecules) and monoclonal antibodies.

One very important recent advance is the development of a new drug — currently awaiting regulatory approval — known as panobinostat, which inhibits several enzymes that myeloma cells need to survive. It has shown very promising results when used in combination with the drugs bortezomib and dexamethasone, which are mainstays of current myeloma therapy. Panobinostat is given orally and appears to be very active in high risk and resistant myeloma. Side effects can be challenging, however, and Dana-Farber scientists and others are working to develop more potent and better tolerated agents..

The pipeline of new agents is very promising. Laboratory researchers at the Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC) Jerome Lipper Multiple Myeloma Center and LeBow Institute for Myeloma Therapeutics recently found that even though myeloma cells often have extensive DNA damage – which would normally trigger their death – low levels of a protein called YAP1 can prevent them from dying. They also found that production of YAP1 is controlled by an enzyme known as STK4. This suggests that drugs targeting STK4 offer a new strategy for treating patients with myeloma and other hematologic cancers whose tumor cells have DNA damage and low levels of YAP1.

Similarly, scientists at Dana-Farber and Brigham and Women’s Hospital have developed a drug-delivery system that uses tiny nanoparticles to precisely attack cancer cells in the bone. In a recent study, mice were pre-treated with nanoparticles loaded with the cancer drug bortezomib, then injected with myeloma cells. The treatment resulted in slower myeloma growth and prolonged survival. The pre-treatment technique also enhanced bone strength and volume.

Researchers have used a technique called gene expression profiling to determine which genes are overactive in patients’ myeloma cells, which may indicate which patients are likely to benefit most from drugs that specifically target those genes.

Studies by Dana-Farber scientists over the last decade have shown that bortezomib, as well as the immune system-modulating drug lenalidomide, when combined with dexamethasone, target myeloma cells in the bone marrow, helping overcome resistance to other agents and dramatically improving depth and duration of response in relapsed myeloma patients. Remarkably, this in turn has led to a paradigm shift in therapy across the whole field. Dana-Farber investigators are now leading large national and international clinical trials of this combination treatment for patients newly diagnosed with advanced myeloma.

Five Tips for Managing Stress During Cancer Treatment

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Eric Zhou, PhD

Eric Zhou, PhD

Everyone faces stress from time to time, but a cancer diagnosis can be particularly challenging for both the patient and the family members.

“For many of our patients and survivors, they experience a great deal of stress related to their diagnosis, treatment, or fears of recurrence,” says Eric Zhou, PhD, clinical psychology fellow at Dana-Farber’s Perini Family Survivors’ Center. “But they also have general life stresses on top of that, like family, finances, and work, that don’t go away just because they’re battling cancer.”

Zhou, who leads Dana-Farber’s Survivor Stress Management and Relaxation Training (SMART) workshops, provides some tips on how to handle stress during cancer treatment:

1. List your stresses. Write down all the stressors in your life so you know, specifically, what issues you are facing. It is easy to tackle each stress point if you know exactly what they are, rather than feeling as though you have to take them all on at once.

2. Involve your family and friends. Many people believe that no one can help them with their problems.  It’s important to make your family, friends, coworkers, and medical team aware of what you’re going through. Often they can help answer questions and help you find solutions for your stress list.

3. Make SMART goals. When you are trying to tackle stressors, make goals that are specific, measureable, attainable, realistic, and have a time frame. Stay away from general goals and set tasks you know you can complete. For example, aim to attend yoga class at least once a week, or answer five emails before lunchtime.

milford garden bench4. Take some “me” time. Many patients and survivors are used to taking care of families, spouses, or tasks at work. However, it’s important to set aside some time that is just for you. Ask yourself when the last time was that you truly had “me” time. You could try leaving for an appointment an hour early to give yourself time to make a stop at a favorite coffee shop, store, or park.

5. Avoid negative coping behaviors. Some people turn to food, alcohol, caffeine, or tobacco to cope with stress. In reality, these behaviors just help you avoid dealing with problems and can actually exacerbate the stress.

The Adult Survivorship Program at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC) helps survivors cope with stress and learn relaxation techniques through its new Survivor SMART! program, a free 4-week, iPad-based class. To learn more about these courses, email dfci_adultsurvivors@dfci.harvard.edu.

More information on DF/BWCC’s Adult Survivorship Program

Research Shines Spotlight on Risk of Morcellation Procedure in Hysterectomy

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Research by Dana-Farber Cancer Institute scientists supports the U.S. Food and Drug Administration’s recent warning about laparoscopic power morcellation, a procedure sometimes used to remove the uterus and uterine fibroids, noncancerous growths that often appear during childbearing years. The FDA based its warning on data suggesting that the procedure may spread unsuspected cancerous tissue beyond the uterus.

Suzanne George, MD

Suzanne George, MD

The procedure involves an electrical device, a morcellator, that slices uterine tissue into pieces that are removed through small incisions in the abdomen. Such “minimally invasive” surgery is often preferred to traditional, open-abdominal surgery because it can lower the risk of infection and other complications. It’s estimated that about 50,000 women a year in the United States undergo hysterectomies with laparoscopic power morcellation.

The procedure has received increased scrutiny in recent years because of concerns that some patients may have undetected uterine cancers known as sarcomas, and that morcellation may inadvertently scatter cancer cells through the abdomen. There currently is no reliable method of identifying sarcomas in the uterus before surgery. Earlier this week, Johnson & Johnson, the largest manufacturer of morcellators, announced it was withdrawing the tool from the market.

Recently, Dana-Farber’s Suzanne George, MD, and her colleagues published a study in the journal Cancer that tracked uterine sarcomas in women who had undergone hysterectomies, either by power morcellation or traditional abdominal surgery. Here, she discusses her research.

 

Q: What did your most recent study find?

A: We examined the medical records of hundreds of women with a diagnosis of uterine leiomyosarcoma who were seen at Dana-Farber, Brigham and Women’s Hospital and Massachusetts General Hospital from 2007 to 2012, and we compared the outcomes of patients who underwent total abdominal hysterectomies (TAHs) with those of patients who received laparoscopic intraperitoneal power morcellation hysterectomies because they were thought to have fibroids prior to surgery. We found that the risk of recurrence of sarcoma was four times higher in the morcellation group than in the TAH group. We also found that the sarcomas generally recurred more quickly in the morcellation group – an average of 11 months, compared to more than three years in the TAH group, and that the recurrences following morcellation were more likely to be in the abdomen or pelvis.

 

Q:  What led you to undertake this research?

A:  I specialize in sarcomas, cancers of the connective tissue. A significant proportion of my practice is caring for women with uterine leiomyosarcoma, which, although uncommon, is the most common sarcoma of the uterus. Some of my patients have had hysterectomies involving morcellation because, before surgery, the growth in the uterus was thought to be a benign fibroid, which is very common. Unfortunately, the final pathology exams of the removed tissue found the presence of sarcoma cells. I was concerned that intraperitoneal morcellation of a uterine sarcoma might lead to worse outcomes than traditional abdominal hysterectomies because the tumor is cut up within the abdominal cavity as part of the removal process.

 

Q:  What message should women take from your study?

A:  Women who are having a hysterectomy that involves the removal of uterine fibroids should be aware that intraperitoneal power morcellation can worsen the course of uterine sarcomas if such sarcomas are present before surgery. Because there is no way, prior to surgery, to distinguish benign fibroid tissue from uterine sarcoma tissue, all efforts to minimize intraperitoneal uterine morcellation should be considered.

The Truth About BRCA Testing and Genetic Risk

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Huma Q. Rana, MD

Huma Q. Rana, MD

Cancer genetics has come a long way in the last two decades, leading to increased prevention and improved treatment options. Today, research is shining the light on why certain people have an increased risk for cancer.

“It took us 20 years to get where we are today with the knowledge of BRCA1/2, but we are starting to find changes in other genes that are explaining a history of cancer in families,” says Huma Q. Rana, MD, clinical director for Dana-Farber’s Center for Cancer Genetics and Prevention. “These new genes we’re identifying are likely to make a difference in prevention and treatment in the future.”

Rana recently discussed the truth around BRCA testing and genetic risk in a live video webchat hosted by the Susan F. Smith Center for Women’s Cancers at Dana-Farber. The chat, which featured questions submitted by patients and live viewers, covered topics on hereditary breast and ovarian cancer risk, genetic testing costs and procedures, as well as new findings around gene mutations that may increase cancer risk.

View the video of the July 16 webchat below. For more information on cancer genetics, visit the website for Dana-Farber’s Center for Cancer Genetics and Prevention.


How Reiki and Qigong Can Help Cancer Patients

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Zakim Center qigong and tai chi master, Rami Romes, teaches qigong to Dana-Farber patients.

Zakim Center qigong and tai chi master, Ramel Romes, teaches qigong to Dana-Farber patients.

Cancer therapy can take a toll on one’s body and mind. Thankfully, there are a variety of integrative therapies that, together with traditional medicine, can help patients feel better during treatment. Through the Leonard P. Zakim Center for Integrative Therapies, Dana-Farber offers therapies such as acupuncture, massage, meditation, yoga, and creative arts and music therapy, as well as lesser-known practices, including reiki and qigong.

What is Reiki?

Reiki involves allowing the universal life energy believed to surround and inhabit the body to help ease anxiety and promote relaxation. During reiki sessions, master practitioners gently place their hands on or above patients’ bodies while patients sit or lie down on a massage table, acting as a conduit for energy to flow through to the patient.

“There is a larger energy outside of us, and that energy is present in the entire universe and available to everyone; the practitioner simply becomes a vessel for that energy to move through,” says Bambi Mathay, LMT, reiki master practitioner, who provides reiki, massage, and reflexology to adult and pediatric patients through the Zakim Center.

“Reiki is a gentle therapy that offers support to increase quality of life, before, during, and after treatment,” adds Theresa Ochenkoski, LMT, reiki master practitioner, and certified foot reflexologist. Small studies, including one by Dana-Farber radiation oncologist Clair Beard, MD, published in the journal Cancer, have shown that reiki can help reduce anxiety. Many report a reduction in pain and nausea as well, although the experience is unique for each person.

What is Qigong?

Qigong (pronounced chee-gong), “the science of energy,” combines meditation techniques with body movements and breathing in a low-intensity exercise that harmonizes body, mind, energy, and spirit. Group sessions at Dana-Farber, which are available to adult cancer patients of all ages, their families, and Institute staff, consist of standard exercises and visualization to ease muscles, reduce stress, boost the immune system, and improve mood during treatment.

A Qigong session at Dana-Farber

A qigong session at Dana-Farber

“By activating the body and breath, we help the mind reach a meditative state, which can help reduce anxiety and fear,” says Ramel Rones, who has been teaching qigong and tai chi at Dana-Farber since the Institute first started offering these therapies 15 years ago. He explains that qigong focuses on fine tuning body, breath, mind, energy, and spirit, until one achieves balance and harmony.

“Qigong is about healing from within,” Rones adds. “When we evoke the spirit and have a positive outlook, we have a stronger chance of success, whether in a hospital bed, on the soccer field, or elsewhere.”

Tai chi, which is also offered at the Zakim Center and is a subset of qigong, “awakes the warrior from within,” says Rones, giving patients a mental “opponent,” which can help strengthen them mentally when battling a strong enemy in cancer.

Before beginning these or any exercise or integrative therapy programs, please consult your physician.

Documenting Illness: Images of Hope

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Riley waits for her turn to get out on the field. Photo credit: Abby Archer

Riley waits for her turn to get out on the field. Photo credit: Abby Archer

In the midst of a serious illness, there are glimpses of a childhood intact: painting a ceramic ladybug, reading “Froggy Learns to Swim” before bed with siblings Drew, 10, Meghan, 8, and Daniel, 2, and joining friends in the outfield for a summer staple – a baseball game.

These are the ordinary moments in 7-year-old Riley Fessenden’s life, captured by Abby Archer, a photography major and recent graduate of Endicott College in Beverly, Mass.

Photo credit Abby Archer

Riley at a check-up. Photo credit Abby Archer

These slow summer days are a gift, a reprieve from the rigors of treatment for Riley, who was diagnosed in May 2013 with esthesioneuroblastoma, a rare form of nasal cancer. Riley just completed six radiation treatments, and is receiving oral chemotherapy at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.

Archer first met Riley after studying medical documentary photography for her thesis project. “From the start, I knew that I wanted to document a child battling illness and his or her family,” she says.

Fortuitously, Archer saw an Endicott College Facebook post in January 2014. The college had just hosted Riley and her parents for lunch and made her an honorary student, because it is her dream to attend Endicott. Sensing an opportunity, Archer contacted Riley’s parents, Kamie and Todd Fessenden. “They were completely open to me entering their lives and photographing them,” says Archer. “I have been documenting the family ever since.”

Riley and her brother. Photo credit Abby Archer

Riley and her brother. Photo credit Abby Archer

For Archer, documenting Riley’s life using a tumblr feed has become more than an academic project. “When I first met the family, I knew they were something special,” she says. “They have an outstanding amount of strength and are as positive about their situation as they can be. Riley is a happy, smiling, strong girl, surrounded by supportive family, friends, and community.”

Just as important as documenting Riley’s illness was witnessing “how the family does their best to keep a sense of normalcy in coping,” Archer says. “The best way that this came through is usually through the little, everyday moments. We are able to see the love this family shares and how they are focusing on the quality of Riley’s life and enjoying every moment with her.”

Archer documents the juxtaposition of the Fessenden family’s home life and Riley’s illness in a hospital setting. “I did not want this series of photographs to be just about what illness looks like,” Archer says. “I also wanted it to show what it means to a family, and how they cope with it; how they continue to live.”

Photo credit Abby Archer

A story before bed. Photo credit Abby Archer

While the project is now complete and Archer has graduated, she continues to spend time with the Fessendens. “I have become very close with the entire family,” she says. “What I have learned from them is the importance of love. They share their positivity with me without any effort. Their laughter has made me smile along with them.”

Google+ Hangout: Coping with Cancer as a Young Adult

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GoogleHangoutScreenShot1-2Karen Fasciano, PsyD, director of the Young Adult Program at Dana-Farber, recently joined young adults with cancer from across the country for a Google+ Hangout to discuss the challenges of facing cancer as a young person.

“Cancer is different when you are building your adult life,” said Fasciano. “[Cancer] can cause high levels of emotional distress – sadness, anxiety – which can be somewhat overwhelming. Often young adults need help coming up with new coping strategies.”

Heidi Floyd (@followheidi), Bret Hoekema (@brethoekema), Allie Morse (@allieemorse), Renee Nicholas (@reneenicholas), Alex Niles (@alxniles), and Tara Shuman (@tarashuman) joined Fasciano on July 30 for the hour-long virtual hangout, during which they discussed where they found support, dating and maintaining relationships, family planning, diet and exercise, and the desire to “pay it forward” to newly diagnosed young adults,

“There’s no right or wrong way to do this,” said Fasciano of coping with cancer. “Professional support is one option, and many young adults also get support from peers who have gone through treatment, family, friends, and spouses.”

Bret Hoekema, who blogs about his cancer experience, advised young adults with cancer to, “Panic, that’s cool. Get it out. And then get back to living. Your life is still yours to create.”

“I’m still the same person I was before diagnosis,” he added. “Cancer doesn’t change who you are, but it can and should inform who you will be.”

Watch the full hangout for more insight from our panel of young adults:

Save the date for our first @DanaFarberYAP Twitter chat on young adults, cancer, and a changing worldview on Tuesday, Aug. 12, 8 p.m. EST. Follow along using #YAPchat.

Five Things You Need to Know About Glioblastomas

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Glioblastomas are the most common primary cancer of the brain, with 13,000 new cases being diagnosed each year in the United States. Although it is a fast-moving cancer, doctors know a lot about this type of tumor and are finding ways to fight it.

Here are five things you need to know about glioblastomas:

200515753-0011. What is a glioblastoma?

A glioblastoma is a central nervous system tumor. It is formed in the supportive tissue of the spinal cord and brain and is typically found more often in adults. It is an astrocytic tumor, which means it begins in the star-shaped cells in the brain called astrocytes.

 

2. What are the symptoms?

Brain tumor symptoms depend on where the tumor starts in the brain, what size it is, and what part of the brain it controls. The symptoms are also not the same in every person. Symptoms can include:

  • Progressively worsening headache
  • Frequent nausea and vomiting, often worse in the morning
  • Loss of appetite
  • Vision, hearing, and speech problems
  • Loss of balance and trouble walking
  • Weakness
  • Unusual sleepiness or change in activity level
  • Changes in personality, mood, ability to focus, or behavior
  • Seizures

 

3. Are there certain risk factors for glioblastomas?

The cause of most adult brain tumors is unknown. However, doctors have found that some rare genetic syndromes may increase the risk of brain tumors, including glioblastoma.

Genetic syndromes that increase risk:

 

4. How do doctors diagnose a glioblastoma?

Doctors use various procedures that examine the brain and diagnose a possible brain tumor. In addition to a physical exam, doctors may perform neurological exams to test a person’s mental status and coordination, as well exams to test vision. Other tests can include:

Biopsies are also used as a tool to diagnose glioblastomas. Brain biopsies take a piece of tissue from the brain and test it for cancerous cells. This is typically done after a brain tumor has been revealed by imaging tests.

 

5. What treatments are available for glioblastomas?

Several different treatment options are available for glioblastomas, and are chosen based upon the tumor and your oncologist’s treatment plan:

  • Surgery, radiation and chemotherapy are routinely provided.
  • Chemotherapy can sometimes placed into the brain during surgery.
  • Radiation and chemotherapy given at the same time.
  • A clinical trial of a new treatment added to a standard treatment.

There are currently 19 Dana-Farber clinical trials for glioblastoma patients. Some trials are for newly diagnosed patients while other trials are for patients with recurrent glioblastoma. The team at Dana-Farber’s Center for Neuro-Oncology regularly develops new clinical trials for treatment options. A national list of trials is available at clinicaltrials.gov.

Learn more about the treatment of adult brain tumors by visiting the Center for Neuro-Oncology at Dana-Farber/Brigham and Women’s Cancer Center.

Post-Traumatic Stress and Cancer

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Many associate post-traumatic stress disorder, or PTSD, with veterans returning home from war, or those involved in similarly violent scenarios. But PTSD can occur after any life-threatening traumatic event – including a serious illness like cancer.

Hands-2“It’s common for cancer patients, even if they don’t have full-blown PTSD, to have some of the symptoms of it,” says Fremonta Meyer, MD, of Dana-Farber’s department of Psychosocial Oncology and Palliative Care, who notes PTSD rates among cancer survivors are slightly higher than the general population.

Symptoms of PTSD include re-experiencing the traumatic event, usually in the form of flashbacks or nightmares; avoidance; hyper vigilance; startling easily; inability to concentrate; insomnia; and negative self-perceptions. Usually, symptoms emerge shortly after the trauma, but sometimes they do not appear for months or even years afterwards.

“Cancer patients experiencing PTSD may skip appointments or procedures to avoid triggers that remind them of their trauma, which could cause health problems if they miss surveillance scans or other follow-up,” Meyer explains.

The key to lowering the risk of PTSD, says Meyer, is prevention. Patients should consider attending support groups or meeting with a mental health provider prior to finishing treatment to address the emotions surrounding the cancer experience. For those suffering from delayed PTSD following treatment, cognitive behavioral therapy, eye movement desensitization reprocessing (EMDR), and some medications can relieve the symptoms of PTSD. The disorder often goes hand-in-hand with depression and anxiety, so medications for those ailments can help with some symptoms of PTSD. Blood pressure medications are sometimes used as well to assist with nightmares and other sleep issues.

While cancer is a traumatic stressor, not everyone who has a stressor gets PTSD, says Meyer. It’s also possible to experience post-traumatic growth.

“In post-traumatic growth, patients may have emotional distress but then come out of that and grow in many important areas,” she says, including how they relate to others, the way they think about their cancer experience, and in spirituality.

Patients who are younger, female, less-educated, and who have had previous trauma or a preexisting mental health condition, such as depression or anxiety, might be at higher risk for PTSD. But seeking psychiatric help during and immediately following cancer treatment can help these patients process their emotions and heal mentally and emotionally.

“If you don’t pay attention to processing a trauma, you might be more vulnerable to PTSD later on,” Meyer says.

Five Questions About Vitamin D

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Sometimes known as the “sunshine vitamin” because it’s produced by the body in response to sunlight, vitamin D is important for maintaining strong bones and ensuring healthy functioning of the lungs, cardiovascular system, immune system, and brain. Because of concerns that excessive sun exposure can lead to skin cancer, some people may avoid spending much time outdoors – potentially lowering their vitamin D levels if they don’t get enough of the vitamin through diet or supplements. Here are some vitamin D basics: 

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How does vitamin D work in the body?

It plays an important role in regulating the amounts of calcium and phosphorous in the blood. It also enables the body to absorb these minerals, which are essential for strong bones.

 

What are the primary sources of vitamin D?

The body makes vitamin D in response to the ultraviolet B rays in sunlight. According to the Vitamin D Council, exposing the skin to the sun for only a short time is sufficient for most people (those with pale skin tend to make vitamin D more quickly than those with dark skin). The council advises exposing the skin for about half the time its takes the skin to turn pink or begin to burn. While vitamin D is added to some foods, like milk, few foods naturally contain any of the vitamin – and the foods that do have the vitamin generally have only small amounts. For that reason, the Vitamin D Council recommends taking a vitamin D supplement each day.

 

How much vitamin D do people need?

Different organizations recommend different amounts. The Vitamin D Council recommends adults take 5,000 international units a day; the Endocrine Society recommends 1,500 to 2,000 international units a day; and the Food and Nutrition Board recommends 600 international units a day. These discrepancies reflect the need for more research in this area, scientists say.

 

What problems can arise from a vitamin D deficiency?

A severe deficiency of the vitamin can cause the disease rickets in children and a condition known as osteomalacia in adults, both of which result in soft, thin, and fragile bones. A lack of vitamin D has also been linked to other conditions, including cancer, asthma, type II diabetes, high blood pressure, depression, Alzheimer’s disease and autoimmune diseases such as multiple sclerosis and type I diabetes, although more research is needed to better understand these links.

 

What does the latest research on vitamin D deficiency and cancer show?

Some early-stage studies have suggested that flaxseed and vitamin D may help reduce the risk of breast cancer. Judy Garber, MD, MPH, the director of the Center for Cancer Genetics and Prevention at the Susan F. Smith Center for Women’s Cancers at Dana-Farber, is helping lead two studies exploring the effectiveness of these substances. A study by Kimmie Ng, MD, MPH, of the Dana-Farber/Brigham and Women’s Cancer Center showed that African-Americans of have lower levels of vitamin D in the blood and may need higher doses of vitamin D supplements to meet nationally-established goals. She is currently leading a clinical trial of the effectiveness of vitamin D in treating metastatic colorectal cancer.

Can Melanoma Affect Any Skin Type?

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Melanoma, the deadliest skin cancer, gets its name from the pigment-producing cells called melanocytes from which tumors can develop. These cells manufacture the dark pigment, melanin. When a human develops these cells, they populate not only the skin, but also other organs including the back of the eye and the nervous system.

Yawkey Center for Cancer Care healing garden.Melanin strongly absorbs sunlight and helps to protect the skin from ultraviolet light that damages DNA, which can contribute to the development of cancer. Because people with dark skin have more protective melanin, they are at lower risk of developing melanoma than those with light skin. However, it should be kept in mind that individuals with any skin type can develop melanoma.

Melanoma often first appears as a superficial growth on the skin, but over time it can become invasive – growing deeper into the skin and metastasizing; that is when the cancer becomes life-threatening. The lifetime odds of developing invasive melanoma are – according to one’s ethnicity:

  • White: 1 in 44
  • Hispanic: 1 in 250
  • Native American: 1 in 350
  • Asian: 1 in 800
  • Black: 1 in 1,100

Melanoma can occur anywhere in the body, though in individuals of African or Asian descent, melanoma usually develops on the soles of the feet or the palms; it can also develop under a finger or toenail. Importantly, for individuals of mixed descent, it is harder to predict melanoma risk. Your sun reactivity is a more accurate indicator of your risk of developing skin cancer.

To stay safe in the sun, be aware of how your skin type influences your risk of skin cancer. If you are very fair-skinned, with light or red hair, or have a lot of freckles, you are more susceptible to skin damage that can lead to skin cancers like basal cell carcinoma, squamous cell carcinoma and melanoma. It’s a good idea to have periodic skin checks by an expert to look for early signs of cancer.

People who are less likely to burn and easily tan are less at risk for skin cancers. But doctors advise people of all skin types to wear sunscreen, stay in the shade between 10 a.m. and 4 p.m., and to have skin checks by a health professional.

For more information, the Melanoma Treatment Center at Dana-Farber/Brigham and Women’s Cancer Center has expertise in treatment, prevention, and clinical research on this challenging form of skin cancer.


Mother and Son, Both Cancer Survivors, Share Their Story on Radio-Telethon

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When Lisa Robert is interviewed at Fenway Park  for the WEEI/NESN Jimmy Fund Radio-Telethon presented by Arbella Insurance Foundation (Aug 19-20), her mind will no doubt drift back to 1976, when she was a 7-year-old leukemia patient at Dana-Farber and had the thrill of her life. She threw out the first pitch of the season at Fenway to Boston Red Sox catcher Carlton Fisk.

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Lisa, as a child, with Red Sox legend Carlton Fisk

Lisa won’t be the only member of her family reminiscing on air about pediatric cancer. Her son, Josh Robert, now 17, was treated at Dana-Farber in 2009 for Burkitt’s lymphoma.

Two generations of Jimmy Fund Clinic veterans in the same family is quite a rarity, but experts here anticipate they will be encountering it more often. Although there is no known genetic link between Josh’s illness and the acute lymphoblastic leukemia (ALL) Lisa faced, more children with cancer are now recovering into adulthood – and physician-scientists are continually learning about additional late effects, including secondary and treatment-related cancers.

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Lisa, with her son Josh, back in 2009

“We may be seeing the tip of the genetic iceberg as we begin to care for the children of the first and second generations of childhood cancer survivors,” says Jennifer Wu, MD, PhD, a hematologist/oncologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and Josh’s doctor. “We will be paying close attention to cancer risk in the children of survivors, both as a possible treatment effect and as a possible genetic link.”

Jennifer Brown, MD, PhD has done extensive research on families in which several individuals have blood cancers. “The cancer more commonly develops later in life in both individuals, but we do suspect a genetic link in some cases,” explains Brown, director of Dana-Farber’s Center for Chronic Lymphocytic Leukemia. “We are using modern genomic technologies to investigate genes that could contribute.”

Cancer was the last thing on Lisa’s mind in 2009 when Josh, then 11, entered a hospital near the family’s Hudson, N.H. home for surgery to remove a growth on his neck. In the 1970s, Lisa’s parents had been told any children she had would have no increased cancer risk.

“When they discovered Josh had cancer, I knew what lay ahead, but I also had confidence that we would get through it,” says Lisa. “Josh asked me, ‘Am I going to die?’ and I told him, ‘No, you’re going to the best place in the world to take care of this.’”

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Lisa and Joshua today

The 47-mile drive to Dana-Farber for Josh’s appointments was familiar to Lisa, who had grown up near Hudson in Derry, N.H. In another twist, Lisa’s two primary oncologists, Stephen Sallan, MD, and Orah Platt, MD, PhD, were still at Dana-Farber when Josh was cared by Wu and Lewis Silverman, MD – both of whom Sallan trained.

One day when Josh had an appointment in the Jimmy Fund Clinic, Sallan was there. He recognized Josh’s grandmother, Faye Tinkham, as Lisa’s mother. “Things had come full circle,” Lisa says of the encounter.

Dana-Farber’s tie with the Red Sox also endured in the years between Lisa’s and Josh’s experience. Lisa developed a love for the team she passed down to Josh, and he saw his first game at Fenway through tickets donated to the Jimmy Fund Clinic.

Now he’s a junior in high school hoping to become a fire fighter. After what he and his mom have gone through, he says, he looks forward to helping other people.

Patient and Doctor Come Full Circle

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A young Kate during her treatment

A young Kate during her treatment

Kate Franklin was 3½-years old in August 2000, when her mother brought her to the Boston Children’s Hospital emergency room because she was bruising easily and couldn’t seem to shake a strep throat. Loren Walensky, MD, PhD, had just started his fellowship in pediatric hematology/oncology in July, and that night Kate Franklin became one of the first patients he diagnosed with cancer. When Walensky told Emily Franklin that her daughter had leukemia, the mother placed her hands on the doctor’s shoulders, and, in a moment that Walensky says he will never forget, she said, “I will see you at her wedding.”

Kate Franklin’s wedding day has yet to arrive, but she’s now a 17-year-old rising senior at Bishop Feehan High School in Attleboro who thinks she wants to be a doctor. This summer she is working in Loren Walensky’s lab, which is exploring the promise of chemically-modified fragments of proteins called “stapled peptides” to treat some drug-resistant cancers.

Kate has been cancer-free since the two years Walensky – now a pediatric oncologist and chemical biologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center — spent treating her for acute lymphoblastic leukemia.

Dr. Walensky and Kate

Dr. Walensky and Kate

They kept in touch, and when Kate contacted Walensky to see if he knew of any laboratories that would take a high school student for the summer, he invited her to participate in his lab’s internship program for high school and college students considering careers in science and medicine.

“It’s good to see how a cool opportunity can come out of a hard time,” says Kate. “It makes it come full circle.”

“It’s the most wonderful thing,” Walensky says. “Every time I look at her I see that spunky, bright-eyed 4-year-old, and here she is all grown up. It’s just profoundly meaningful for her and for me.”

Walensky assigned Kate a project adding various synthetically-altered peptides to tissue cultures of stubborn cancers to see which ones help kill malignant cells. She is learning how to handle the peptides, prepare tissue cultures of cancer cells, and examine the cellular responses using a powerful, sophisticated microscope – all work, Walensky notes, that a graduate student or post-doc could be doing.

WalenskyandFranklin2-2“Other than biology class, I haven’t had the opportunity to do science,” Kate says. “This is the real thing.”

This is exactly why Walensky started his Expose-Inspire-Launch internship program in 2006. The current batch consists of Kate, a 2014 high school graduate about to start college, and a college undergraduate.

firstfewdayshome-3“We’re trying to cultivate the next generation of scientists,” Walensky says. “Having the interns in the lab creates a wonderful dynamic. They remind the older students of those early feelings of ‘wow’ about the wonders of science that inspired them to pursue research careers.”

Years ago, when Walensky was still a fellow, his patient load grew too rapidly, so a nurse practitioner helped him reassign some patients. Kate Franklin remained on his list. “Kate’s your ray of sunshine,” his colleague told him, “and in this work, you’ll need your ray of sunshine.”

At Kate’s five-year check-up, the critical moment when the hope of having conquered cancer becomes real, Emily Franklin gave Walensky a special gift – a ceramic wall hanging in the shape of a sun. It now hangs in the family room of his home.

Watch Kate’s story that aired recently on the 2014 WEEI NESN Jimmy Fund Radio-Telethon.

How is Research Improving Treatment of Head and Neck Cancers?

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Head and neck cancers account for 3 to 5 percent of all cancers in the United States and can occur in the oral and nasal cavities, the sinuses, the throat, the larynx, the salivary glands, and the thyroid. When diagnosed early, many head and neck cancers can be cured with combinations of surgery, radiation, and chemotherapy.

Lab Pipettes-2Researchers in the Head and Neck Cancer Treatment Center at Dana-Farber/Brigham and Women’s Cancer Center have shown that carefully tailored regimens involving surgery and combined chemotherapy/radiation can often save tissues and structures like the larynx and vocal cords, which are vital to good quality of life.

Advanced cases can be difficult to treat, and much of the current research focuses on testing combinations of medications – including a number of new drugs – with the aim of prolonging survival. Several clinical trials involving surgical techniques and novel drugs are available through Dana-Farber’s Head and Neck Oncology Program. One trial is looking at a procedure called cryoablation – using instruments that remove cancerous tissues by freezing them– to treat head, neck and spine tumors.

Until the past decade or two, most head and neck cancers occurred in people who drank or smoked heavily, or were exposed to industrial chemicals. Now, a greater proportion of cases are associated with infection with the human papilloma virus (HPV) through sexual transmission.

Studies have revealed that head and neck cancers caused by HPV infection respond better to treatment and patients have a better outlook than those linked to alcohol, tobacco and chemical exposure. It’s been suggested that patients with HPV-caused cancer might be successfully treated with lower doses of radiation and have less severe side effects. Trials are underway to determine if reduced doses can be safely given to these patients.

Jochen Lorch, MD

Jochen Lorch, MD

Other trials are comparing the effectiveness of new drugs against standard therapies. Among them are nivolumab, an immunotherapy drug, and afitinib, a tyrosine kinase inhibitor.

Jochen Lorch, MD, MS, a specialist in thyroid cancers, says thyroid cancer therapy has seen major developments in treatment options. For example, researchers are carrying out a number of trials of new drugs, including molecularly targeted agents, for patients with advanced thyroid cancer.

Many studies have also focused on using tyrosine kinase inhibitors, which have shown to be quite active in treating thyroid cancer. “At Dana Farber, we have also explored the use of a entirely different type of drug, targeting the mTOR molecule. We found that efficacy was very high, especially in patients with certain types of genetic abnormalities,” Lorch says.

“We are currently exploring this strategy in different types of thyroid cancer and are seeing remarkable level of activity,” Lorch adds. “We are envisioning a future where patients with a specific set of genetic markers are matched with the optimal drug to ensure the best possible outcome.”

Get the Facts on Metastatic Breast Cancer

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When breast cancer spreads to other parts of the body it is known as metastatic breast cancer (MBC), or metastatic disease. MBC is also sometimes referred to as advanced stage breast cancer or stage IV breast cancer.

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Rachel Freedman, MD, MPH

Although there is no cure for MBC, it is treatable. Thanks to new treatments developed through clinical trials, women with MBC are often able to lead full, active lifestyles with a good quality of life.

We sat down with Rachel Freedman, MD, MPH, a breast oncologist with the Susan F. Smith Center for Women’s Cancers at Dana-Farber, to learn more:

 

Are there different types of MBC?

The different types of breast cancer are often defined base on a cancer’s “receptors”, such as estrogen receptor and human epidermal growth factor receptor 2 (also called HER2). There are also newer techniques we are starting to use that help define cancers based on genes within a cancer, but more research is needed on how to best use this information in selecting treatments.

 

What percent of patients are diagnosed with MBC?

Approximately 10 percent of patients will have their initial diagnosis of breast cancer made when it is metastatic. As far as women who are initially diagnosed with earlier stages of breast cancer, approximately 30 percent of these patients will have a recurrence that results in metastatic breast cancer. The risk of a recurrence depends on the features of the breast cancer, including the size of a tumor, degree of lymph node involvement, as well as the biological features of the cancer.

 

Is there any way to prevent MBC?

There is no fool-proof way to prevent MBC, but there are some things that can reduce the risk:

  • Women age 40 or older should strongly consider screening for breast cancer, and anyone with a strong family history of the disease should consider screening earlier.
  • People diagnosed with early-stage breast cancer should follow recommendations from their doctors and nurses with regard to chemotherapy, radiation, or hormonal treatments. This will help lower the chances for recurrence.

It is important to remember that although there are risk factors for breast cancer such as family history, estrogen exposure, and past radiation to the chest, none of these factors put patients at risk specifically for MBC.

 

How is MBC treated?

Treatments for MBC are aimed at attacking cancer cells wherever they are in the body, rather than focusing on a specific body part. These “systemic” treatments help control the cancer, help women live longer, and maximize quality of life. These treatments can include therapies that target estrogen (such as tamoxifen and aromatase inhibitors), those that target the HER2 expression (such as trastuzumab/Herceptin), chemotherapy, and clinical trials. Dana-Farber is currently conducting more than 30 clinical trials to study the effects of new, targeted drugs on metastatic breast cancer. Much of the research work performed at Dana-Farber has resulted in treatment breakthroughs and new standards of care for patients with metastatic disease.

 

Where can MBC patients find support?

There are many ways MBC patients can find support, and patients should use their treatment team as a resource. At Dana-Farber, we have an incredible social work team, support groups, as well as the metastatic disease cohort, a group that follows women with MBC and gives them the opportunity to interact with other patients. In addition, there are a number of online support groups and resources like the Metastatic Breast Cancer Network, breastcancer.org, Susan G. Komen for the Cure, and the Metastatic Breast Cancer Alliance, among others.

 

Is there any new MBC research to share?

There have been many advances in metastatic breast cancer treatment over the past few years. Several new treatments have been FDA-approved for MBC and there are many more to come. We now have a greater understanding of the various subtypes of breast cancer, which is helping us identify new treatment options through clinical trials, tailored specifically for patients with metastatic breast cancer. We are confident that all of our research will translate into improvements for women with metastatic disease in the years to come. The best way to learn about new clinical trials is to speak with your provider.

The Susan F. Smith Center for Women’s Cancers at Dana-Farber will host its annual Metastatic Breast Cancer Forum on Saturday, Oct. 18, 2014, from 9 a.m. – 12:30 p.m. The event, sponsored by EMBRACE (Ending Metastatic Breast Cancer for Everyone), is open to all patients with MBC and their families. To register, call 617-632-4915 or email embrace@partners.org. 

The Susan F. Smith Center at Dana-Farber and the Metastatic Breast Cancer Network will also host a live video webchat on the latest treatments and research for metastatic breast cancer on Wednesday, Oct. 29, 2014, at 1 p.m. with Eric Winer, MD, director of the Breast Oncology Program. To submit your questions for Dr. Winer, email webchats@dfci.harvard.edu and tune in live here: http://www.dana-farber.org/webchats

Months After Transplant, Teen Hits the Soccer Field

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Some 100 days after receiving a stem cell transplant to cure his severe aplastic anemia, 13-year-old Behaylu Barry still couldn’t invite friends into his home. He can’t return to school until January, when his immune system will finally be strong enough to fight the pathogens present in indoor spaces. Yet  Behaylu was doing so well that he was cleared to play soccer – outdoors, of course — for the first time since February, when he was diagnosed with the life-threatening blood disorder.

Behaylu's first game back. Photo credit: Julie McGuinness

Behaylu’s first game back. Photo credit: Julie McGuinness

On August 23, Behaylu walked onto the field with the Exeter (N.H.) Hawks for a two-game pre-season tournament. The Hawks won both games, with Behaylu scoring one goal and making five assists. His mother, Midori Kobayashi, cheered so much and so loudly that  she lost her voice.

“Soccer is the biggest step back to a normal life,” Behaylu says. “It’s one giant leap.”

“He pushed himself beyond his limits,” says his father, Aidan Barry. “But he’s 13. What do you do? Put him in a cage? It was a magical time.”

As rare as his condition is, Behaylu’s story is particularly unusual. Adopted from Ethiopia at 6, his best chance for cure lay in finding a matched sibling stem cell donor – a task his clinicians at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center initially thought was impossible. But Behaylu’s adoptive parents had been paying for the education of his siblings in Africa, and two turned out to be perfect matches. On May 12, after five days of intensive chemotherapy to kill his diseased bone marrow, Behaylu received stem cells from his brother Rediat. Along with his sister Eden, Rediat had come to America on a 30-day journey that had them flying on an airplane for the first time and taking their first hot showers.

Now Behaylu’s body is reconstituting the bone marrow his illness had devastated. It’s producing the oxygen-carrying red blood cells, infection-fighting white cells, and clot-promoting platelets whose absence had left him dangerously susceptible to infection and bleeding. Since his transplant, he has been infection-free and has not contracted graft-versus-host disease, which affects 10-20 percent of patients with a matched sibling donor. His doctors will follow him for a year.

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Behaylu and his mother, Midori, in May 2014, when Behaylu was receiving chemotherapy in preparation for his stem cell transplant. Photo credit: Roger Pelissier, Flashes of Hope

“Behaylu is almost certainly cured,” says Leslie Lehmann, MD, clinical director of Dana-Farber/Boston Children’s Stem Cell Transplant Center. “The new bone marrow cells from his brother are doing very well. We have every expectation he will lead a full and normal life.”

Since returning to his Stratham, N.H., home in June, Behaylu has seen friends in his back yard only – plus on a trip or two to town during which he stayed outside when they entered stores. He takes 47 pills a day and can eat fresh produce only at home, after it’s been thoroughly washed according to his clinicians’ instructions. His sense of taste is returning,  and after getting the go-ahead in August to eat restaurant food, he tried his favorite, a Five Guys hamburger, albeit without lettuce and tomato.

After missing most of the spring semester, Behaylu caught up with his studies over the summer, earning high honors, and he’ll complete his first semester of eighth grade through Skype, Facetime, online learning and tutors.

When he returned to his soccer team, Behaylu got no more special treatment than a “Hey, dude, it’s been a while,” which he appreciated.

“I don’t like being special unless it’s soccer and I scored a goal,” Behaylu says. “If it’s something bad” – like getting severe aplastic anemia – “I don’t want to be known for it, because it’s not something I did. In soccer, I worked for it. I earned it.”

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