A doctor’s race to support bone marrow donor registration

Posted June 3rd, 2019 by Kristen and filed in News
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Dr. Lam Do, whose son’s life was saved by a bone marrow transplant, will lead a team in a cross-country cycling race to help register potential donors.

Dr. Lam Do, member of Team SuperMarrow

Kaiser Permanente doctor Lam Do will trade his white coat for a cycling jersey when he leads Team SuperMarrow in the 9-day, 3,000-mile Race Across America (RAAM). Their mission: to save lives by raising awareness about the need for ethnic diversity among marrow and blood stem cell donors.

It’s a cause Lam knows well. In 2001, his 18-month old son, Luke, was diagnosed with leukemia. Hope lay in a marrow transplant, but like 70% of people, Luke needed a donor outside his family. The family turned to Be The Match to find an unrelated donor. Because Luke is multiracial, his chances of finding one were slim. Due to a lack of diversity on the Be The Match Registry, some ethnicities have as little as a 1 in 5 chance of finding a donor. But Luke was one of the lucky patients who found a match.

Lam will draw on his family’s experience to power through the challenges of RAAM, which kicks off from Oceanside, California on June 15 and ends in Annapolis, Maryland on June 23. Billed as “The World’s Toughest Bicycle Race,” it crosses 12 states and climbs a total of 175,000 feet — with Lam slated to take many of the uphill stretches in the relay.

“My son was dying. That pain was greater than me going up a mountain,” he says. “That puts it into perspective for me.”

The ‘miracle’ of finding a match

In September 2001, Luke hadn’t been feeling well. Lam felt his son’s belly and discovered an enlarged spleen. When lab tests revealed a white blood cell count 3 times the normal rate, Lam and his wife, Dr. Sarah Gaskins, knew it was serious. The diagnosis quickly followed: juvenile myelomonocytic leukemia, a rare childhood disease.

“Our lives changed overnight,” Lam says. The couple, who were expecting their second child, brought Luke from their home in San Jose to the children’s hospital at Stanford University.

Luke began chemotherapy and that October, his sister, Christina Hope, was born. The family had hoped stem cells from Christina’s umbilical cord blood would be the cure her brother needed, but she wasn’t a full match. Since Lam and Sarah weren’t matches either, they needed to find an unrelated donor.

Luke was getting sicker. Then, just before Christmas, they heard the good news. Luke had a potential match.

“We had a miracle because his donor was already on the registry and his donor agreed to go forward,” Lam says.

The transplant took place 4 days before Luke’s second birthday. There were challenges as Luke’s body adapted to the new blood stem cells, but it proved to be his cure. Luke recently celebrated his 19th birthday.

Meeting Luke’s donor

After a one-year waiting period when donor and recipient aren’t allowed contact, Lam, Sarah, and the donor, Randy Yamanaka, a police officer in Seattle, released their information to each other. They exchanged emails and when Luke was 4-years-old, the family traveled to Seattle to meet Randy.

“The first time [Luke] met Randy, he didn’t know what to say, he was a kid,” says Lam. “We were the parents. We were like, oh my god, how can you thank a person enough for saving your son’s life?”

They’ve kept in touch over the years, mostly over email, with the most recent reunion in 2016 in Seattle.

A donor’s impact on public policy

Randy’s donation has other lasting effects. After being denied paid time off for the procedure, Randy wrote to Washington governor, Gary Locke. As a result, Seattle changed its policy for city employees and Locke signed an executive order that gave state employees paid leave for voluntary and life-saving procedures such as marrow or blood stem cell and organ donation.

Years later, Lam and Luke traveled to Sacramento to support the Michelle Maykin Memorial Donation Protection Act. Inspired by Washington’s law, it requires employers in California to provide up to 5 days of paid leave for marrow or blood stem cell donation. Governor Arnold Schwarzenegger signed the law in 2010 in front of Lucile Packard Children’s Hospital at Stanford where Luke had his transplant.

Gearing up for the race

When Lam joined Kaiser Permanente in 2013, shortly after the family moved to Oceanside, he could cycle 50 miles. Then a staff member invited him on a bike ride, inspiring him to tackle longer rides. Soon, Lam was cycling 100-miles, then 200-miles, and then San Diego’s 6,000-foot Mount Palomar. Still, RAAM is a leap for someone who only started cycling 7 years ago.

“I’m scared. I’ve never done this,” Lam says. “This is our rookie year —the logistics are unbelievable.”

During RAAM, a cyclist from the 8-person team must be riding at all times, 24 hours a day. A support crew will follow in a van and RV, including Christina, who’ll help film the race.

Team SuperMarrow, which has adopted a superhero theme, will start the race wearing their superhero capes. Lam, known to the team as Captain A’marrow’ca, will take the first solo leg.

The team includes 2 other Kaiser Permanente doctors — Dr. Matthew Lux (Superhero Dead Pool), a urologist based in San Diego who’ll be cycling, and Dr. Patricia Chu, a doctor of internal medicine and pediatrics at Kaiser Permanente Oceanside, who’ll be a driver. The rest of the team and crew includes Lam’s patients and their family members.

Team SuperMarrow is also raising funds for the Asian American Donor Program (AADP), which helped in Luke’s donor search by hosting registration drives and press conferences. Learn more about the team and how to donate to AADP at TeamSuperMarrow.org.

Get involved

Interested in becoming a potential bone marrow or blood stem cell donor? To get started:

  • More and register online.
  • You’ll receive a simple cheek swab test. Swab your cheek and mail it back.
  • If you’re a potential match for a patient in need, you’ll get a call.

Chronic GVHD Clinical Trials: Promising research, could it be an option for me?

Posted May 2nd, 2019 by Be The Match and filed in News
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Anna Eames, MS, CGC, Jason Carter Clinical Trials Program

Chronic GVHD Clinical Trials: Promising research, could it be an option for me?

If you’re interested in new, promising treatments for chronic graft-versus-host disease (GVHD), you’re not alone. Through clinical trials, researchers have been studying better ways to treat it, and have made exciting progress.

Anna Eames, MS, CGC, Clinical Trial Patient Education Specialist for the Jason Carter Clinical Trials Program, answers your frequently asked questions about GVHD clinical trials.

1. Why would I consider a clinical trial to treat my GVHD?

Anna: Steroids are the most common treatment for chronic GVHD, but they don’t always work and they can cause serious side effects. Steroids work by weakening your entire immune system, so that it doesn’t attack your body. But, in doing so, steroids also prevent your immune system from attacking bacteria, viruses or other invaders. This means that you’re more likely to get infections.

Clinical trials help doctors learn more about new or unproven ways to treat GVHD. It’s only through clinical trials that new treatments are approved. Sometimes the new treatments work better and have fewer side effects than the standard treatment. If you join a clinical trial, you may have treatment options that wouldn’t otherwise be available to you.

2. If I join a clinical trial for GVHD treatment, would I continue my current treatment, or would it be replaced with the treatment in the trial?

Anna: That’s a great question. Whether you continue your current treatment typically depends on how well it’s working for you. Your doctor may have you continue taking your current medicine plus the new treatment. Or, if your current treatment isn’t working very well or at all, you may stop it before you start a new treatment.

3. What are some of the most promising studies for treating GVHD?

Anna: Researchers are looking at ways to stop or prevent the immune system from attacking your body, but still allow it to protect you. There are a few promising studies that are looking at blocking different parts of your immune cells so they stop attacking your body and causing GVHD, but still allowing them to protect your body from infection.

Just recently in 2017, the U.S. Food and Drug Administration (FDA) approved the drug ibrutinib for people who have chronic GVHD that didn’t get better with steroids. Thanks to the researchers and patients who joined the clinical trials, now more people may be able to get this treatment. We’re very hopeful to see more new treatment options approved by the FDA in the next few years.

4. If I’m interested in finding a clinical trial to treat my GVHD, what should I do next?

Anna: I recommend talking with your doctor to learn about your treatment options. Here are some questions you may want to ask:

  • How well is my current treatment working?
  • What other treatment options are available to me either as standard treatment or as part of a clinical trial?
  • If I join a clinical trial, what will I have to do?

Also, you can search for GVHD clinical trials through the Jason Carter Clinical Trials Program. I’m happy to answer your questions or help you with a search!

5. What else should I know about GVHD clinical trials?

Anna: Costs are such an important factor for patients in clinical trials. Talk with your health insurance company before joining a trial to find out what may be covered and what you may need to pay for yourself. If you join a clinical trial far from home, Be The Match has a financial grant that may be able to help with those costs.

Lastly, joining a clinical trial is entirely your choice, and you can stop at any time. Your doctor will take good care of you, regardless of your treatment decisions.

Resources for you

Eating well after transplant: Expert tips for you

Posted May 2nd, 2019 by Be The Match and filed in News
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Brittany Beaver, MS, RD, CSP, LD, Texas Children’s Hospital

Good nutrition is a key part of gaining strength after transplant. But transplant changes things. Nutritional needs and tastes may change, sometimes making it hard to eat healthy. This can especially difficult for parents of young transplant recipients who may already be picky eaters. Brittany Beaver, MS, RD, CSP, LD, from Texas Children’s Hospital, offers some healthy eating tips for you or your child.

Healthy food basics

Did you know that a healthy diet after transplant includes a variety of foods that you already enjoy? According to Brittany, “a healthy diet after transplant includes fat, carbohydrates (carbs), protein, fruits and vegetables.” Limit how much you eat of highly processed, packaged, and sugary foods. But keep in mind you don’t need to cut them from your diet entirely. Carbs and fats sometimes get a bad reputation, but they are good in moderation. In fact, Brittany says, “eating enough fats and calories can help you maintain your weight, lower your risk of infections, and repair damage to your body from transplant.”

Avoid infection or illness from your food

Handling food safely helps you avoid getting sick, and it’s especially important when you have a weaker immune system. Fortunately, Brittany notes that “there are fewer and fewer restrictions during and after transplant as many hospitals are now moving away from low microbial diets or neutropenic diets that limit fresh fruits and vegetables.” Safe food handling is still very important. But researchers have found that these special diets don’t actually lower the risk of infection.

The U.S. Food & Drug Administration (FDA) has guidelines for safe food handling. They include:

  • Eat at trustworthy restaurants. Check out the Centers for Disease Control and Prevention (CDC) food safety tips for eating at restaurants.
  • Cook food to safe internal temperatures
  • Store food at safe temperatures
  • Reheat leftovers to safe temperatures

Brittany says, “There is no reason to avoid fresh fruit or vegetables as long as they are washed.” Simply rub firm-skin fruits and vegetables, like apples and potatoes, under running tap water. Do this even if you don’t eat the skin or rind. You don’t need to use a special vegetable wash.

Nutrition and steroids

Steroids are often the main treatment for chronic graft-versus-host disease (GVHD). But they can cause side effects like high blood pressure, high blood sugar, and swelling. If you’re taking steroids, adjusting your diet may help you to avoid or reduce some of these side effects. Brittany recommends eating foods that are relatively low in salt and sugar. “Focus on complex carbohydrates such as vegetables and lower sugar fruits, such as berries, green apples and kiwi,” she advises. “Avoid simple sugars such as soda, juice, sports drinks, and sweets.”

Tips for parents

Eating protein helps your child’s body gain strength after transplant. “All kids’ taste buds react differently during chemotherapy and transplant. But it’s common for kids to have difficulty eating enough protein after transplant,” says Brittany. Meat and fish are great options for protein, but if your child doesn’t like meat consider other high-protein foods such as eggs, nuts, seeds, beans, tofu and dairy.

It’s also common for kids to have low levels of vitamin D after transplant. Brittany advises that “their vitamin D level should always be checked by a doctor before your child takes any supplements.” Also, check in with the doctor, pharmacist or dietitian before giving your child any supplements, herbs, vitamins, or minerals. Some of these can interact with their medicines.

Resources for you

‘Take one day at a time’

Posted April 4th, 2019 by Be The Match and filed in News
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Lorayne’s journey through AML diagnosis, treatment and recovery

It was Monday, Oct. 17, 2011. Lorayne had just dismissed her class of kindergartners for the day when the school office told her she needed to call her doctor right away. A few days earlier, she had gone to the doctor because she was feeling lightheaded, very tired and couldn’t catch her breath. But she didn’t expect the news she got.

“They told me to come to the hospital right away. My blood counts were extremely low and I was seriously anemic. I needed a blood transfusion. I thought I would have the transfusion, get those iron supplements my doctor had been recommending, go home and be back to work the next day. That’s not what happened,” she remembers.

She was admitted to the hospital. Two days later she learned she had acute myeloid leukemia (AML).

“Getting a diagnosis of a blood cancer was frightening, overwhelming and bewildering. I didn’t know what to expect,” Lorayne says.

While she was in the hospital getting induction chemotherapy, she talked to her health care team about her treatment options. For her, a blood or marrow transplant (BMT) was her best hope for a cure.

A BMT, also called bone marrow transplant or blood stem cell transplant, replaces the unhealthy blood-forming cells in a person’s body with healthy ones.

The type of BMT that treats AML is called an allogeneic transplant. It uses healthy blood-forming cells donated by someone else to replace a person’s unhealthy ones. The donated cells can come from a family member, someone unrelated to the patient, or umbilical cord blood.

“I was nervous about what was ahead for me, but as I was preparing to have my BMT in March 2012, I met Wendy,” Lorayne shares.

Wendy was a Be The Match® Peer Connect volunteer who had also had a BMT. She stopped by Loryane’s room to talk.

“Talking to Wendy gave me hope. She answered all of my questions. Her positive attitude gave me such strength and determination,” Lorayne says.

She’s also grateful for the support she received from the Be The Match Patient Support Center.

“Be The Match has been with me every step of the way, supporting me, counseling me and providing information and education about things I might experience after transplant. If I need support, I know they’re always just a phone call away,” she says.

Her experience meeting Wendy and connecting with the Patient Support Center staff motivated her to become a Be The Match Peer Connect Volunteer, too.

“I feel privileged that I have been able to give back and talk to other people that are going through what I went through. There are so many types of support Be The Match offers to both patients and their families—from counseling services to information on financial grants and clinical trials to educational resources—and I’m happy I can pass that information along to others,” Lorayne shares.

While her recovery has had ups and downs, Lorayne has kept a positive attitude.

“My journey wasn’t easy, and I learned to take one day at a time,” she says. “That’s a message I want to pass on to other people who are going through treatment and recovery. I want them to know that they can do this.”

Connect with us

At Be The Match, our goal is to help patients and their loved ones get the support they need, when they need it from their diagnosis through recovery. We’re only a click or call away. All of our programs and resources are free.

What’s “normal” after BMT?

Posted March 8th, 2019 by Be The Match and filed in News
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You may have heard the phrase, “Tell your doctor if you notice anything new or unusual after transplant.” Well, what do you do if everything feels new or unusual? For many people, it’s hard to know what could be a problem and what’s part of the “new normal.” Here are 5 tips to help you adjust to life after BMT:

Brenna, MPH, RN, ONN-CG, BMT Patient Navigator

1. Tell your doctor about new symptoms

According to Brenna O’Brien, MPH, RN, ONN-CG, BMT Patient Navigator in our Patient Support Center, “It’s better to be on the safe side and share any new symptoms with your doctor, even if everything feels new and unusual.” She adds, “If your doctor says your symptoms are part of your “new normal,” they can offer you ways to manage them that maybe you didn’t think of before.”

It’s been 3 years since Gary’s second transplant, and he’s adjusted to his life after transplant over time. But in those days and weeks shortly after transplant, “normal” was unclear and always changing, especially when he had new symptoms. “Whenever I went in for a checkup, if there was anything my transplant team didn’t like, they put me in the hospital,” says Gary. “At the time it was overwhelming, but I appreciate it now because it kept me alive.”

To make it easier to keep track of your symptoms, Brenna recommends writing them down. “Remember, it’s your job to report any changes. Keeping a log of how you’re feeling can help you do that.”

2. Find ways to adapt

Gary’s recovery wasn’t always smooth. He was hospitalized 13 times after his second transplant. He had a variety of complications, including graft-versus-host disease (GVHD), pneumonia and the flu. He realized his life after transplant didn’t look like his life before transplant.

So, Gary adapted his routine to fit his current abilities. “I have neuropathy, which led to falls and stumbles. Realizing I didn’t have the balance, coordination or energy to walk, I got an exercise bike and started using it every day,” he says. “That was my substitute.”

He also has found other ways to still do things he enjoys. “I really used to enjoy going to sporting events, but I’m uncomfortable with the big crowds and stairs,” he says. “Honestly, going to those events aren’t even worth the hassle when I can watch sports comfortably at home, and I can even see more of the game.” His family has adapted, too. They have family celebrations at home instead of going out. And, they know that he may need to take naps more often.

Gary’s advice is to “focus on the things you can do, not on the things you can no longer do.” This mindset may help you adapt to where you are today. And, he adds, “set some reasonable short-term goals to focus on.” Seeing your progress can boost your spirit as you look towards the future.

3. Reconnect with your body

Your body has been through a lot, and reconnecting may be a step towards adjusting to the changes in your body after transplant. For some people, it can be hard to trust their body again. Gary, however, says he’s in awe of his body’s strength. “I’m amazed that my body is strong enough to fight through 13 hospitalizations,” he reflects. And compared to life before transplant, “I listen to my body a lot more,” he adds.

Brenna says that acknowledging the changes and losses you’ve experienced can help you reconnect with your body and understand its limitations and its resilience, too. “It’s a process. Your relationship with your body can change for better or for worse after transplant. Take stock of the changes, then focus on all of the things you’ve overcome,” she says.

4. Keep expectations real

Gary says, “Everyone is going to recover at their own pace.” Base your expectations on where you are now with your recovery, and what you can do.

It’s not uncommon for other people, such as your caregiver, to have expectations for your recovery after transplant. Brenna acknowledges that this can be frustrating. “It’s understandable,” she says, “that your caregiver may struggle as you adapt to your new normal.”

Their expectations for you may be well-intentioned. It’s hard for them to see you go through so much. Work together to create reasonable expectations for your recovery. Brenna adds, “You’re on the same team, and you want the same things. Start by agreeing on that and go from there.”

5. Take control where you can

When you’re adapting to the changes in your body after transplant, think about the things you can control. Brenna suggests that a follow-up or survivorship care plan can help you gain more control. “It’s important for your health, but it can also reduce anxiety of the unknown as you move forward. It can be helpful physically and mentally.”

Gary took control of his mindset. He made a point to focus on one day at a time. “Don’t get too far ahead of yourself,” he says. “Live day-to-day while working on getting mentally, physically and spiritually stronger. While you’re doing that, hope that things will get better. Hope for more strength. There’s always hope.”

Support and resources for you

The Be The Match Patient Support Center offers free support and resources to help you find and adapt to your new normal after transplant.

Sharing your story after transplant

Posted March 8th, 2019 by Be The Match and filed in News
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Ted, transplant recipient

In 2005, Ted was diagnosed with acute lymphoblastic leukemia (ALL). Throughout his journey, he wrote in on his CaringBridge® website to keep his family and friends updated. Years later, those journal entries inspired his book with the dream to help other people through their struggles with illness.

Ted wrote his first journal entry shortly after being diagnosed. It started as a way to keep his family and friends updated on his journey, but quickly became the main source of support from his loved ones. “CaringBridge ultimately became my lifeline,” says Ted. “It allowed me to connect to everyone in the normal world…but it also became the place for my support army to post words of encouragement, letting me know what was going on ‘out there’.”

Re-connect with your experience

Fast-forward to about 8 years after his transplant, Ted was feeling frustrated with the effects of graft-versus-host disease (GVHD) and finding his “new normal.” He realized he was starting to forget the memories and life lessons from his journey. So, he decided to look back at his CaringBridge entries. “I was hesitant to cast myself back into the darkest days of my life to re-live the pain and sadness,” he says, “However, I wanted to re-live the hope, joy, and love that I felt throughout, and the many moments that molded the person I have become.” Re-living those memories and reflecting on them was a way for him to explore his emotions during his recovery.

While Ted was re-reading his journal, he noticed that there were things he wanted to write more about. “So,” he says, “I just sat down one day and I started to write.” To him, writing served as a way to heal and re-connect with his experience. What started with sharing a stapled copy with a couple of close friends, resulted in a published book, “My Extraordinary Demolition.”

Share your experience to help others… and you

Ted remembers being sick in the hospital, feeling isolated with very little information about the disease. He wanted to use what he’s learned to help other people during their transplant journey. He says, “I had been told by my doctor that people survive this illness, but I couldn’t get connected with someone. After my transplant, I wanted to be that survivor to talk to patients.”

Whether it’s been 6 months or 6 years since your transplant, you’ve come a long way. While most other people may not understand what you’ve been through, there are other transplant recipients out there who get it. Sharing your experience can help someone else who may be about to embark on their own journey, or in the midst of it. But it can also help you, too. Ted says, “I love helping people cope with issues after transplant because I dealt with them, too. Sharing my story not only helps the other person but it also helps me as I’m coping with my own recovery.”

Find what works for you

Thinking about sharing your story? Consider what information you want to share and how you’d like to share it.

If you’re comfortable sharing with close friends or family members, consider writing them a letter, an email or inviting them over for dinner. It can bring you closer with to your loved ones and they can better support you if they understand what your experience has been.

If you’re comfortable sharing with a small group of people, consider joining a support group. It can be a great way to connect with others that who understand what you’ve been through. Even if you don’t need the emotional support, sharing your experience can help other group members through their struggles.

If you’re comfortable sharing with a wider audience, consider:
• Writing to your local paper about transplant from a survivor’s perspective
• Sharing on social media, like Facebook

Today, Ted continues to share his story any way he can. He offers one last piece of advice, “There is nothing to lose and everything to gain by sharing your story. And, if you’re helping someone else, it’ll make you feel better. Absolutely guaranteed.”

The Be The Match Patient Support Center offers free:

An unexpected bond

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Latral

Latral, blood stem cell recipient

Latral always knew helping others was her calling, which explains her 20 years of experience in the medical field. She is the head dialysis technician at Virginia Commonwealth University Health System. In 2014, Latral and her husband, Norman, were soon to celebrate their second anniversary with a romantic getaway. Latral fell ill and knew something wasn’t right. Excruciating pain led to a canceled getaway and a trip to the emergency room instead. Latral thought she may have an ulcer, but it proved to be something much worse.

Latral was then diagnosed with acute myeloid leukemia (AML). She was determined to get this behind her, so she could go on with what she felt she was meant to do in this world, taking care of others. With further appointments, Latral learned her cancer had taken over 98% of her body, devouring her red blood cells.

“How long will I be here?” she asked the nurse from her hospital bed.

Without immediate chemotherapy, she had a 4-6 week prognosis. The nurse patted her head, as she was going to be there awhile. Latral longed to get back to her patients, taking their vitals, double checking their monitors, praying with them, and more.

Some days, she slept 16 hours. She was always in pain, from head to toe. Chemotherapy wiped out her entire immune system. After chemotherapy, Latral would need a blood stem cell transplant. At this point, her friends, family, community, and even strangers knew her story. It was no secret that she needed a blood stem cell donor, but it was also no secret the chance of finding one was low. Her siblings were not matches, and Latral knew what a stranger would have to go through to help her.

“Who had that kind of time?” she thought.

Latral turned to prayer. She prayed for herself, and her potential donor. Against all odds, a donor stepped up. This donor was a perfect match for Latral.

The chemotherapy wiped out her leukemia, but unfortunately, when she was ready to have her blood stem cell transplant, Latral’s leukemia returned. Nine months later, after her second round of chemotherapy, she was ready to receive her new blood stem cells, and her donor was also ready to donate.

The operation was a success.

“Who was this individual?” she thought, as she prayed for their healing as much as she prayed for her own.

Raykell

Nearly a decade ago, Raykell had a very close friend in need of serious help. Her young son needed a blood stem cell donor. Raykell joined the Be The Match Registry® in hopes of being his match, but unfortunately, she couldn’t help. The young boy passed away soon after. Fast forward to 2014 and Raykell found herself at church during a Be The Match Registry drive. Her pastor was encouraging people to join the registry and explaining the importance of people of color being blood stem cell donors. She didn’t stay long, as she knew she was already registered.

The Tuesday following that service, Raykell got the call from Be The Match. She was potentially a match for someone in need. While on the call, fear took over Raykell’s body. Her biggest concern was how much donating may hurt. While listening through the phone, Raykell was convinced she would say no. She was currently in a bad family situation, and fear was getting the best of her.

Raykell, blood stem cell transplant donor (third from left), with her transplant nurses

But then, something different happened. In that same moment, Raykell felt God speak to her, telling her he had prepared her for this. Suddenly, her faith took over, and all of her fear diminished. She said yes, and went through with what she now calls an “experience of a lifetime.”

Raykell’s initial testing was a long process. All she knew about the patient she was about to help is that she had leukemia. Going into her donation, Raykell was nervous about being awake and worried about being in pain. The nurses made the process easier than expected, and she overall had a good experience. She felt very tired afterwards, but returned to work two days later without difficulties. A lot of people told Raykell how proud they were of her for agreeing to go through with donating her blood stem cells. Many also shared they would not have been able to go through with it as she had.

Coming together

After the initial waiting period, Latral was allowed to collect her donor’s information. She learned her donor’s name and location, and was finally able to reach out to Raykell. In 2015 the two of them connected via phone, and from there, a friendship began. They became fast friends, talking on the phone daily, and looking forward to meeting for the first time.

“I had to ask her what made her make such a sacrifice for someone she did not even know.” said Latral.

“I did not know I would feel so grateful for going through this experience. The best part was hearing my recipients voice for the first time, saying ‘Thank you so much for giving me another chance at life.'” She shares how Latral’s family has thanked her and made her feel as if she has done something remarkable. She feels God prepared her all those years ago to help someone in need.

“It didn’t matter that I didn’t know who it was. God knew.” shared Raykell.

In 2018, Latral and Raykell were given the opportunity to meet for the first time at the Be The Match New York Soiree in front of a room full of Be The Match® supporters. The photos of the two of them embracing for the first time are more than words can describe, and something nobody who witnessed it will ever forget.

Now, an indescribable bond between two women has begun.

Latral (left), meeting her blood stem cell transplant donor, Raykell (right)

Latral (left), meeting her blood stem cell transplant donor, Raykell (right)

Raykell (left), blood stem cell transplant donor, with her recipient, Latral (right)

Hearst Foundations award $200,000 grant to support the Amy Program

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Hearst Foundations award $200,000 grant to support the Amy Program

Be The Match® is thrilled to be the recipient of a $200,000 grant from the Hearst Foundations, awarded to Be The Match Foundation® to support the Amy Strelzer Manasevit Research Program (Amy Program). This increased investment from Hearst Foundations comes at a critical time as Be The Match Foundation expands support for Amy Scholars from 3 years of funding to 5 years. The Hearst Foundations’ commitment to the development of early-career investigators studying post-transplant complications furthers the

Amy Strelzer Manasevit, blood stem cell recipient

research that leads to critical discoveries, helping more patients live longer, healthier lives.

“We are proud to be associated with the Amy Program,” said Hearst Foundations Executive Director, Paul “Dino” Dinovitz. “The Hearst Foundations share Be The Match’s commitment to eliminating health care disparities and ensuring access to high-quality care for low-income populations. Supporting the development of young medical investigators will help create a broad and enduring impact on the nation’s health.”

The Amy Program is the only U.S. clinical research program dedicated exclusively to discovering treatment and prevention strategies for post-transplant complications while developing the next generation of transplant physician-scientists. Amy Program researchers dedicate their careers to:

  • Finding solutions that make it possible for thousands of patients to avoid dangerous post-transplant complications
  • Improving treatments to help patients overcome complications like relapse, infection, and graft-versus-host disease

The Hearst Foundations’ grant will help these investigators establish their labs, build their portfolios, and publish the results that position them for tenure-track positions and future funding. This investment in research is key to raising the rate of “event-free” survival for our core patients by 25% over the next five years.

To learn more about how you can provide critical funding to help improve outcomes for patients in need of a life-saving blood stem cell transplant please contact Amy Conner at aconner@nmdp.org or (763) 406-8748 | Toll Free: (800) 507-5427 Ext 8748.

About the Hearst Foundations

The charitable goals of the Hearst Foundations reflect the philanthropic interests of William Randolph Hearst, with a focus on ensuring that people of all backgrounds have the opportunity to build healthy, productive, and inspiring lives. The William Randolph Hearst Foundation and The Hearst Foundation, Inc. are independentprivate philanthropies operating separately from the Hearst Corporation.

Living with chronic GVHD of the eyes

Posted January 4th, 2019 by Be The Match and filed in News
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Nearly 10 months after his transplant, Chris was back working in the office when he caught a cold from a co-worker. “My donor immune system did what it was supposed to do,” says Chris. “It rose up and fought off the illness, but then it didn’t calm down.”

Thinking his dry, red eyes were just symptoms of a cold, Chris didn’t think of chronic GVHD. Fortunately, his doctor did. During a regular appointment 2 weeks later, his doctor noticed the symptoms and diagnosed it as chronic GVHD.

“So I started on a stronger dose of prednisone. It had a pretty wicked effect on my body. But it did the trick,” Chris says. He only needed treatment for a few weeks, but many people need treatment for months or even years.

Keep an eye out for symptoms

Chronic GVHD of the eyes happens when the donor’s cells attack the surface of your eyes and your tear glands. According to Dr. Sandeep Jain, Professor of Ophthalmology at the University of Illinois, GVHD of the eyes is common for patients who’ve had an allogeneic blood or marrow transplant (BMT). The greatest risk is between 7 months and 2 years after transplant.

Signs to look for include:

  • Red and/or swollen eyes
  • Discharge
  • Eyes feeling itchy, gritty, painful, or sticky
  • Sensitivity to light
  • Blurry vision

Dr. Jain says, “The best way to lower your risk of developing severe GVHD is to catch it early and to start treatment right away.”

Early diagnosis is key

Dr. Jain recommends routine eye exams before transplant and every 3 months after. If you have any symptoms, get an eye exam right away. Don’t wait for your next appointment. “Eye GVHD can get worse quickly, so early diagnosis and treatment is the most effective and important strategy,” explains Dr. Jain.

If you haven’t had GVHD of the eyes, remember to be alert to any new eye symptoms. Chris’ advice is to, “Identify the symptoms and the root cause early. I initially thought my symptoms were from the cold I had. I didn’t realize it was GVHD until I went to the doctor.”

Treating chronic GVHD of the eyes

For many people, medicated eye drops treat the GVHD. If the GVHD is severe or doesn’t get better, an ophthalmologist (eye specialist) can recommend other treatments. Dr. Jain notes that serum tear eye drops (made from your own blood) can help if the GVHD severely damages the eye surface, and special contact lenses (soft or scleral) can help with severe eye pain.

Overall, chronic GVHD of the eyes is treatable, but it can take time to fully resolve. “With proper treatment,” according to Dr. Jain, “most patients do well, but many need ongoing treatment with some eye drops for years.”

Fortunately, Dr. Jain and other researchers are studying new treatments for GVHD of the eyes. “My laboratory has discovered how neutrophils (a type of blood cell) affect the eye surface,” which has led to clinical trials in the United States. Find a clinical trial for GVHD at jcctp.org.

Coping with symptoms

Even with treatment, GVHD symptoms can still be challenging to manage. Chris used a saline solution to flush out his eyes and clear away mucus. It also changed his appearance. “I’m so used to wearing contacts. It was a change in my image to wear glasses. It was the hardest thing to adjust to,” he said.

One day, before his GVHD was diagnosed, Chris was on the local news doing an interview. “I was sitting right next to the interviewer, but I never looked him directly in the eye. I was ashamed to have him see me like that. My eyes were so red.”

Fortunately, his symptoms cleared after a few weeks of treatment. But many people need treatment for months or years. It can be hard to cope with the symptoms and effects of chronic GVHD for this long. Talking with someone who understands may help. The Be The Match Patient Support Center Peer Connect program can connect you with someone who’s had GVHD of the eyes or a licensed social worker for support.

Questions to ask your doctor

Ask your doctor about your GVHD treatment options. According to Dr. Jain, it’s “best to seek treatment at a center that has experience with GVHD of the eye because some ophthalmologists may think of eye GVHD as just another dry eye.” If this happens, you may not get an effective treatment and your symptoms may get worse.

Here are some questions you may consider asking your doctor:

  • Could my symptoms be early signs of chronic GVHD of the eyes?
  • How much experience do you have treating chronic GVHD of the eyes?
  • Can you refer me to an ophthalmologist who specializes in GVHD?
  • What are all of my treatment options?
  • Are there clinical trials that could help me?
  • How long will I need treatment?
  • What else can I do to ease my symptoms?

Support and resources for you

The Be The Match Patient Support Center offers free support and resources to help you learn about and cope with chronic GVHD.

Chemo brain: Learning how to cope

Posted January 4th, 2019 by Be The Match and filed in News
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Are you having a hard time staying focused or remembering things? Do simple tasks take much longer than they used to? You may be experiencing a side effect of chemotherapy, often referred to as “chemo brain”. Chemo brain can be manageable, but coping with its emotional effects is not always easy.

The following are excerpts from an interview with Hailey Hassel, M.S.W., L.G.S.W., BMT Social Worker in our Patient Support Center.

What advice do you have for someone struggling with the emotional effects of chemo brain?

Hailey: Chemo brain can make it more difficult for you to do everyday tasks. This can lead to emotions like anxiety, grief and frustration. You may find yourself feeling angrier or more easily tearful than you used to. Be patient with yourself and accept where you are in your recovery. It’s not likely to be your reality forever, but it is for today.

Find strategies that will make things easier. Some people use humor to cope with frustration. Our survivorship chats and support groups are a good way to connect with other transplant recipients and learn new coping strategies. It may help to tell your loved ones what you’re going through so they can better support you. It’s also important to tell your doctors so they can rule out specific causes (like a medicine you are taking) and give you tips for how to cope.

For someone experiencing chemo brain, what advice do you have about going back to school or work?

Hailey: When returning to school or work after transplant, it can be hard to keep up with required tasks and demands. Consider these tips:

  • Start out slowly.
  • Create a To-Do list.
  • Use sticky notes to remind yourself of important items.
  • Reference your calendar throughout the day.
  • Ask your teacher or employer about accommodations that could help you succeed (such as recording meetings, or organizing your work area for better concentration).

You may not be able to fill the same role after transplant and may need to redefine your purpose, or even search for a new one. It can be hard to accept this reality. It may even feel like you’ve lost a part of your identity. It’s OK to acknowledge and grieve these losses. Talk about what you’re feeling with your caregiver, a close friend or family member.

How do you recommend someone talk about their chemo brain with co-workers, classmates, teachers or managers?

Hailey: You may choose to say something like, “Since going through treatment, my brain works a little differently. I’m going to take some notes during our conversation so I don’t forget anything.” If you’re worried about disclosing your story to others at school or work, it’s important to know you’re not obligated to explain yourself. Some people find it helpful to have quick responses ready so they’re better prepared if something comes up. For example, you could say, “the thought escaped me” or “it’s been a long day.” Ultimately, you get to choose what you want to share.

For parents of children going back to school, it’s important to tell your child’s teacher what to expect and the best way to handle any situations that may arise. You don’t need to tell the full story – just what’s important for the teacher to know so that your child can succeed. For example, you could say:

“__________ is on a new medicine that affects his/her thinking. He/she may be a little more ‘spacey’ or forget things sometimes. He/she typically feels __________ when this happens. I’ve found it helpful to _________.”

How can caregivers support loved ones struggling with chemo brain?

Hailey: Be patient with your loved one! The effects of chemo brain can make it difficult to do certain tasks. Your loved one may feel embarrassed or frustrated. Support them as they do things on their own, even if it takes longer than it used to. It’s OK for them to make mistakes. Note which coping and management strategies work best for them (for example, breaking tasks into smaller pieces and using sticky notes for reminders) and encourage them to use these during daily activities.

What else do you want someone to know if they’re struggling with chemo brain?

Hailey: You can be thankful for your transplant and still be angry about the side effects. That’s OK. Tell yourself, “I don’t have to like this reality, but it’s where I am today. I’m going to try to make this work.” Find strategies that work best for you, and incorporate them into your day. Pay attention to your body; it will tell you when you feel the most productive. It’s OK to take breaks when you feel tired. Lastly, be patient with yourself – you’ve overcome so much!

What tips have worked for you? Share in the comments!

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