What you should do once a month
Whether or not you’re currently experiencing GVHD symptoms, it’s always important to look for changes. “The sooner we can treat your symptoms, the better. We want you healthy,” says Dr. Stephanie Lee, Professor of Medicine at Fred Hutchinson Cancer Research Center.
“Once a month, stand naked in front of a mirror and look at your body. Feel your skin. Look for changes. You know your body better than anyone else,” she says. “If you notice anything unusual, tell your doctor right away. Don’t ignore early symptoms of skin GVHD, which can include: a rash, itching, thickness, tightening, burning (in rare cases), or problems moving joints.
When it just won’t go away
Everett has been managing chronic GVHD of the skin for the past ten years. While his GVHD has not been severe, it’s certainly been an ongoing challenge. He experienced a defining moment many years ago with his doctor. “After a frustrating episode with my GVHD, I asked if she could just fix it and she said, ‘No. You have this.’ That’s when I really understood that this is something I would have to manage for life.”
Everett explains that the appearance of his GVHD— loss of pigment (dark and light lesions) on his face, legs and feet—can be uncomfortable at times. He works in sales and often has face-to-face interactions with clients. “It can be an issue,” he says, “People can tell something is going on.”
Scenarios like this can be difficult, but Everett says, “I’m grateful that I have the type of personality that allows me to stay positive and not sweat the small stuff.” He encourages others to have a positive attitude and to work closely with their doctor. “If you can, stay with the one doctor. And always follow doctor’s orders.” Through a referral from his transplant doctor, he’s had the same dermatologist through it all. This relationship has helped him learn to manage his GVHD in new ways, like trying different lotions and ointments prescribed by his doctor.
Dr. Lee agrees that GVHD can be challenging, but working together with your medical team and following precautions like avoiding the sun can make all the difference. “Patients can become frustrated with long-term management of GVHD— especially if treatments aren’t working as well as they once did. But don’t give up. Talk to you doctor and let us find what works best for you,” says Dr. Lee.
Team up with your doctor to find the best treatment
“Many treatments are available but it comes down to what works best for you. Sometimes that means trying different treatments regimens—what works one day may not work as well next month, so tell us how things are going and we can keep trying new things together,” Dr. Lee says. “If a treatment is not working well—don’t try to adjust it yourself, that could be dangerous. That’s what we’re here for—to help you stay healthy and feel better.”
Learn more tips to help prevent and manage GVHD or share your experience with GVHD below.
Adulthood on hold
Matt was on his way to adulthood. He had just graduated from college, was working at a bookstore, considering law school and was enjoying life with his girlfriend, Cori. That’s when he got the news that changed everything. He had cancer and needed a transplant. Suddenly, life as he knew it was put on hold.
“The world was in front of me. You go from being a carefree 20-something, to thinking you might not make it the next two years.”
In an instant, Matt’s plans for the future changed. Instead of hanging out with friends, he was living with and relying on his mom. He and Cori were spending more time as patient/caregiver than as boyfriend/girlfriend. “We used to spend our weekends going out with friends. Instead, we were at home and she was cleaning my port. It was hard to accept that this was my new reality.” Matt said.
Finding new ways to connect
During Matt’s treatment, his life was consumed with medical appointments and procedures. His friends were enjoying their lives and moving on. “I couldn’t relate to them anymore and I lost many friends. That was isolating.”
Matt had to find new ways to connect with people who could understand what he was going through. He started reaching out to others through adolescent and young adult (AYA) support groups where he found others he could relate to. Without having to explain, they understood his experience.
“Oregon Health & Science University (where he received his transplant) has a great AYA program. I was fortunate that my doctor was so involved in the AYA cancer community. He helped me connect with others like me, and that was extremely helpful. Participating in activities like the river rafting trip was really important for my recovery. Not just physically, but being able to find your new normal–finding fellow survivors who have gone through similar things–is a way to kind of regain your sanity,” Matt said.
Matt’s advice: “It can be lonely, but you are not alone. Find others in the same place as you. Find new friends who understand your story.”
Reclaiming his adulthood
Today, Matt and Cori (now his wife) are enjoying their 30s. They spend time going to movies and meeting friends for dinner. He says the transplant experience made him see things differently. “It forced me to grow-up and offered a perspective you can’t buy. So I think I have an appreciation for my life and just everything that encompasses that is really priceless.”
Kayla was a senior in high school having fun with her friends and planning her future when she got sick. She was thankful for the gifts of love and support she received from her family, but she was missing something: her friends. She had many friends, but they didn’t stay by her side during transplant. “I would pick up my phone to find someone to call. There was no one. It would have been nice to have some friends to lean on,” she says.
“My mom was there to hold my hand, which made me feel secure. My cousin prayed for me constantly, made me laugh even when I was exhausted, and kept my spirits up. My pastor’s wife kept me wanting to fight, even when I was tired and down. The nurses also made me feel like they really cared if I survived. Their words of encouragement helped me to understand what was happening to me and what to expect during my treatment,” Kayla says.
Finding peer support
Kayla found peer support through social media. Through Facebook pages like Be The Match Patients Connect and Insights e-community, she found other patients she could relate to and who understood what she’s been through.
Kayla’s advice: “You are not alone. Reach out. Try to contact other patients. It’s helpful to talk with others who’ve been through transplant. They can relate because they’ve been there.”
The new me
“I just recently started nursing school in January and completed my first semester with straight A’s. Being a patient has motivated me to want to be a nurse because I will truly understand exactly how the patient is feeling. I will be a bone marrow transplant nurse in 2015! If I hadn’t gotten sick and gone through transplant, I would have never gone to nursing school. It’s amazing how things seem so broken for so long when you’re sick, but if you just hang in there, all of the broken pieces come together into something bigger and better than I could have ever dreamed of. I am well on my way to making a difference in the lives of future transplant patients.”
“Transplant changed me completely,” she says. “I am slowly finding the ‘new me’ and realizing I am in a different place in my life now.”
Join Kayla on the Insights e-community. Start a discussion that matters to you.
Social support: tips from Insights e-community
It can be hard for others to see someone they care about go through something so difficult. You may find that some friends will distance themselves, while others are with you every step of the way. Both are normal responses to a stressful situation. Find ways to communicate openly and honestly with your friends.
So, Rocky and Allison have found the perfect place to meet: Richmond’s June 1st Be The Match® Walk+Run at Monroe Park. They don’t have any idea what each other looks or sounds like, but they know that Be The Match — a non-profit that connects marrow donors with blood cancer patients — helped them find each other once before.
Allison’s marrow runs through Rocky. She’s the reason this 57-year-old husband and father beat cancer and is alive to enjoy his family, work and golf game. “The Be The Match Walk+Run sounded like a nice way to meet, make more people aware of marrow donation and help the cause that has changed both our lives,” said Allison, 27.
The 5K, 1K and Tot Trot fundraising event highlights the need for more marrow donors. Every year, more than 12,000 patients in the U.S. are diagnosed with blood cancers like leukemia and a marrow transplant from an unrelated donor is their best hope of a cure.
In 2007, Rocky was diagnosed with a blood cancer called myelodysplastic syndrome (MDS). He needed a marrow transplant to survive, but no one in his family was a marrow match.
Rocky was all too familiar with his situation. In 1993, his older brother developed leukemia and needed a marrow transplant. Rocky donated his marrow, but sadly his brother died from post-transplant complications.
While maintaining a positive attitude, Rocky couldn’t ignore his brother’s experience and updated his medical directives and will. He knew no one in his family was going to match him. Most patients (about 70 percent) do not have a marrow donor in their family. They depend on Be The Match Registry® to find an unrelated donor.
A year earlier, Allison, then a college student, had joined the marrow registry after her cousin was diagnosed with leukemia. “I wanted to be the match for my cousin, but I wasn’t. Another donor — a stranger — saved her life.”
“When I got the call about a man, about my dad’s age, who I matched — the decision was easy. I wanted to pay it forward,” said Allison.
“It’s one thing for me to donate to my brother,” said Rocky, who received his transplant at Virginia Commonwealth University Massey Cancer Center. “But Allison didn’t know me. She went through this for a total stranger. She’s my savior. It takes a very unselfish person to do what she did.”
The Be The Match Walk+Run raises funds to support marrow transplant research, help patients with uninsured treatment costs, and add more volunteer potential marrow donors to Be The Match Registry, giving more patients hope for a cure.
Join a community transplanting hope. Help patients with blood cancers take the next step toward a life-saving marrow transplant by taking a few of your own. To register, fundraise, volunteer or support a runner or walker with a contribution, visit BeTheMatchWalkRun.org/Richmond.
To join or contribute to the Allison/Rocky Team and support all patients in need of a marrow transplant, visit: http://www.BeTheMatchFoundation.org/goto/AllisonRocky
It was in July of 2005 when Krista first learned that she had acute myeloid leukemia (AML). She had experienced severe anemia, strange/easy bruising and sinus problems, leading her to see a doctor. After her AML diagnosis and treatment, Krista was in remission for three years, until her relapse in August of 2008.
“Thank you to the Momma who made the decision to donate her baby’s cord blood.”
Krista was told that she would need a marrow transplant to live. After nearly four months of searching for a marrow match with no success, Krista’s team of doctors began searching the Be The Match Registry® for a viable cord blood donation. The Be The Match Registry partners with registries all over the globe to find matching adult donors and cord blood units for searching patients. Remarkably, a matching cord blood unit was found in Australia that had been frozen for 10 years, waiting for a match like Krista.
Before her transplant, Krista underwent a week of high-dose chemotherapy and three days of full-body radiation. “I was tied down on a board for the radiation and since I couldn’t move, I just fell asleep,” said Krista, “the days after I was quite ill from the toxins and damage.”
On the day of the transplant, Krista received an injection of the life-saving cells in her port like any normal transfusion, but during the process she got a “bad tingle” in her throat and had trouble breathing. Hospital staff was right there with Krista throughout the process to ensure her safety.
“My doctor said it was up to God because they’d done all they could do.”
Krista’s recovery was not typical, it was just plain hard as she dealt with complication after complication. She reacted so violently to the prophylactic medications (received prior to transplant) that her organs shut down. Her doctors decided to put her in a coma in order to save her life. Miraculously, Krista woke up 2 weeks later with no terrible long term damage. “My doctor said it was up to God because they’d done all they could do,” said Krista.
Unfortunately that was not all Krista went through in the first 100 days after transplant. Krista got severe mucositis that almost took her life—causing malnutrition because she was unable to eat or drink for 30 days. Krista also experienced acute and chronic graft-versus-host disease (GVHD) during this time (now under control with the right treatment plan).
After two and a half months in the hospital and a few weeks in a hotel next to the hospital, Krista was able to return home to continue her recovery.
Now, four years later, life for Krista is not completely “back to normal”, but she is adjusting just fine to her new life. “I’m doing very well. Laughing a lot, enjoying my family and learning new things…sounds like normal life,” said Krista. “I can’t run anymore and am not able to hike like I used to, but I’ve come to accept my new normal and am loving it.”
In celebration of her four-year transplant birthday, Krista held a Be The Match marrow registry drive, to help more patients like her find the life-saving marrow match that they need.
“There were extremely hard days, but through all the suffering there were many blessings,” said Krista. “Without the life-saving decision of that Australian mommy to donate her baby’s cord blood to the public registry, I wouldn’t be here today to raise my own two boys!”
To read more about Krista’s transplant journey, visit her blog.
The National Marrow Donor Program® (NMDP) is looking for individuals with the talent and experience to help shape the direction of NMDP’s future.
The NMDP is seeking nominations for Affiliated and Independent Director positions on the board of directors.
What some parents are discovering is that giving birth can also change someone else’s life.
Tam’ra and Reinhard
When Tam’ra and Reinhard were expecting their first child, they saw a lot of advertising about storing cord blood, but weren’t interested in that option. They learned about the option to donate their baby’s cord blood during pre-natal classes at their Atlanta hospital.
“We did our research,” says Reinhard. “We found out that cord blood is rich with cells that can help people fighting certain illnesses.” After that, Tam’ra added, “It was kind of a no-brainer.”
Patrice and Kindu
Toward the end of their second pregnancy, Patrice and Kindu had determined they would not keep their baby’s cord blood for their own family’s use, “but we hadn’t learned much about public donation,” Patrice says.
When it was time to deliver the baby, a hospital staff member asked if they were going to donate the cord blood. “She asked a few basic questions and provided some literature. We talked it over and decided it wouldn’t make sense not to participate,” Kindu explained.
Listen to these parents tell their stories about public cord blood donation.
“My daughter held a car wash to fundraise, and I wanted to do something to help too,” said Craig. “I called my local blood center and decided to join the registry.”
The Call to Donate
Like many others, Craig joined the registry thinking he would never get the call to donate, or at least not right away. Little did he know that just four months later he would get the call. “I got a phone call saying that they wanted for me to come down for additional testing,” said Craig. After the additional testing and physical exam, Craig received another call from the blood center, this time asking if he would still be interested in going through with the marrow donation, pending a final round of tests.
While waiting to see the doctor to receive the results of his testing, Craig noticed a little girl around 10-years-old who had cancer. “At that point, it got real,” said Craig. The doctor explained that out of eight HLA markers, six were an exact match with a 62-year-old woman with non-Hodgkin lymphoma (NHL). Craig decided to move forward and the donation was scheduled for September 2005.
Not Even a Hurricane Could Stop Craig’s Donation
Two days before Craig’s scheduled donation, news sources in Texas and nationwide put out an alert that a category five hurricane named Rita was headed for the gulf coast and was expected to hit Pasadena, where Craig lived and was supposed to donate. As a firefighter, Craig would be responsible to help in a natural disaster like Hurricane Rita. When Craig explained his situation to the blood center, he discovered that the patient was very sick and could die if the donation was postponed. This meant that Craig needed to donate bone marrow (extracted from the hip) in the middle of a hurricane. The hospitals evacuated everyone who did not need necessary surgery in preparation for the hurricane, and Craig was admitted for donation.
After his donation, Craig was picked up in a fire engine by his fellow firemen. Because everyone was trying to get out of town before the storm, traffic was gridlocked. He was told to lean forward in the fire engine as they put the lights and sirens on to get Craig home. Once Craig was home safe, the hurricane made a right turn and missed Pasadena – dumping rain and 30 mile per hour wind gusts on the city.
Meeting this “Fiery Little Lady”
A year after his donation, Craig received a call from the blood center, asking if he wanted to meet his recipient. “My first response was no.” said Craig. “I didn’t donate to be a hero. I donated because it felt like the right thing to do.” When the blood center reached out to Craig a second time, they told him that they wanted to share their meeting with others to encourage new potential donors to join the registry, he agreed.
In October 2006, Craig met his recipient, Kathleen. “I told the reporters the whole story, I didn’t pay attention to the camera,” said Craig. “Then this fiery little lady ran at me, threw her arms around me and I thought she was going to run me over.” Craig and Kathleen stayed in contact off and on after their meeting. Then one day a couple of years later, Craig received a phone call from Kathleen’s husband, letting him know that she had passed away. Her husband and daughter both told Craig that without him, their family wouldn’t have had Kathleen as long and they were so grateful.
In Honor of Kathleen
In 2012, Craig decided to participate in a Be The One Run (now Be The Match Walk+Run) event. He was asked to fill out a race bib stating he was running in honor of Kathleen. It was then that it all came together for Craig. He finally realized the difference he had made.
“After 28 years of saving people from all types of terrible things, I thought this was nothing more than an extension of who I am and what I do,” said Craig. “She was special, she was something. I am fortunate that I had the opportunity to do something.”
Honor, celebrate and memorialize your loved ones and recipients like Kathleen. Participate in a Walk+Run event near you or give funds to help add more potential donors to the registry, advance transplant research and improve access to treatment.
Guerrero will serve as an “Ambassador of Hope” for Be The Match.
“My wife Casey had leukemia and she’s alive today because she received bone marrow from a donor we found through Be The Match,” Guerrero said. “I want to do everything in my power to help Be The Match bring that gift of life to as many other blood cancer patients as I can.”
Thousands of patients with leukemia, lymphoma and other life-threatening diseases depend on the Be The Match Registry®, the world’s largest and most diverse listing of potential bone marrow donors and donated umbilical cord blood units, to find a matched donor.
“My message is simple: Join the Be The Match Registry. You could be someone’s cure,” Guerrero said. “It just takes a few minutes to join the registry, and you could be called to save someone’s life.”
Guerrero, 29, a native of Gilroy, Calif., has won six world titles in four divisions. He is a rising star in the boxing world –earning the nickname “The Ghost” for his elusive style in the ring.
Now Guerrero is dedicating the biggest fight of his boxing career to fighting blood cancer with Be The Match. On May 4, Guerrero will take on undefeated champion Floyd Mayweather at the MGM Grand Hotel & Casino in Las Vegas.
“We’re thrilled to have Robert Guerrero in our corner as we take on leukemia, lymphoma and other blood cancers,” said Jeffrey W. Chell, M.D., chief executive officer of Be The Match. “He and his family know from experience that when people join the Be The Match Registry, they can literally save someone’s life.”
In 2007, Guerrero faced his most challenging bout outside the ring. The boxer’s wife, Casey Guerrero, was diagnosed with leukemia. Guerrero put his career on hold, vacating a world title to help care for his wife. Casey relapsed three times before she found a matching bone marrow donor. She underwent a successful marrow transplant in 2010. Doctors have declared her cancer free and she is doing well.
Guerrero and his wife are working to raise awareness about the importance of the registry by teaming up with Be The Match on a public awareness campaign in 2013 that will urge young people, especially those with diverse racial or ethnic heritage, to join the Be The Match Registry.
Those interested in joining the registry can join online at BeTheMatch.org. It costs about $100 to add a new member to the Be The Match Registry and Guerrero is encouraging people to get involved in any way they can. In addition to joining the registry, people can spread the word or make a financial contribution to Be The Match to grow the registry, support research and deliver tangible relief to families struggling with uninsured transplant costs.
Facts About Blood Cancer & Marrow Donations
- Every year, more than 12,000 patients are diagnosed with life-threatening diseases—such as leukemia and lymphoma—for which a marrow or cord blood transplant from an unrelated donor may be their best or only hope of a cure.
- Every four minutes, someone is diagnosed with a blood cancer.
- 70 percent of all patients who need a transplant do not have a matched donor in their family. They depend on the Be The Match Registry to find an unrelated donor or cord blood unit.
— Deborah Boyer Koren, Be The Match volunteer
When Deborah Boyer Koren retired, she connected with Be The Match® and became a trained volunteer courier—an individual that delivers life-saving marrow from the volunteer donor to the anxiously awaiting recipient. “As a twice cancer survivor myself, I am well aware of how life and living are so closely intertwined… I am grateful to be here and that I am able help others. It’s my gift back,” she says.
A financial contributor and a tireless champion for Be The Match, Deborah’s most generous gift is her time. Since 2008, she has completed more than 150 courier trips. With the precious cargo in the safe hands of the patient’s medical team, she sings “happy birthday” as she turns to head back home. Deborah knows firsthand that a second chance at life is an extraordinary gift. “I just feel honored to be a part of it.”
You, too, can make a difference! Contact us for a list for of volunteer opportunities in your area. Our current needs include:
- Be The Match Walk+Run— The Be The Match Walk+Run is a fun and moving event that allows our passionate community to come together to help provide cures for blood cancers. We need friendly, energetic volunteers to help with event set-up, registration, water stops and more. Volunteers receive training, a T-shirt, and the appreciation of everyone who works to help marrow transplant patients.
- Recruitment drives—We need your help to add more potential donors to the Be The Match Registry®. Volunteer at your local area recruitment drive and help Be The Match staff with important tasks like assembling buckle swab kits, traffic flow, and conducting health screenings. Each new registry member brings hope to every patient; each could be the one a patient has been hoping for.
- And many other opportunities.
Email firstname.lastname@example.org to get started.
I had always been a regular blood donor. Blood and needles—the medical stuff never bothered me, and it was something easy for me to do to help others. During one of my many blood donations, one of the people who worked there casually asked me if I would consider becoming a potential bone marrow donor, by joining the Be The Match Registry®. I asked what was involved, and they told me, “just one extra tube of blood” (Editor’s Note: Be The Match® has since changed its donor registration process to be a cheek swab, rather than a blood sample).
Seventeen years after joining, I was a potential match
Now fast forward 17 years—after numerous moves and a name change through marriage, Be The Match tracked me down. I was on vacation and when I returned I found a letter in the pile of mail at the post office—there it was, an envelope with a neon sticker indicating a high level of importance. I opened the letter to find out that I was a potential match for patient in need of a marrow transplant. The letter asked me to please respond – the patient in need was a four-year-old boy.
Thrilled by the miracle that I was a match
When I found out that I was indeed a match, one of the physicians involved in the program explained to me how the testing worked and the results. The doctor told me that I was a match for this little boy. To me this was nothing short of a miracle because, 1) we were not related, and 2) my ancestry is a real “Heinz 57″ with a few known, but also some “secret” ingredients.
My family, friends, employer, and community were all extremely supportive.
I thought the whole donation process went very smoothly. It was organized very well, from the itinerary to taxi vouchers and more—everything was there, easy to use and understand. I talked to many very kind people and I felt very supported.
Bone marrow donation
To me, the donation was easy. I got up early, went through all the pre op preparations and met everyone involved with the surgery. After the donation I was even able to see my bone marrow in the bag and I “blessed it” before it was whisked away to wherever the recipient was located. The post op recovery nurses then turned to me and said, “wow you just saved a life”.
The hospital staff helped me understand the recovery process and how to control the pain. In recovery, I took a nice long nap, and later that afternoon my dad came to pick me up and take me home with him. When we arrived there about 2 hours later, I had very little pain but was exhausted and went to bed early after eating dinner.
The surgical site felt like a bad bruise, perhaps like if you had fallen on your butt on the ice, or something like that. It really wasn’t that bad. The pain pills they gave me handled that pain just fine, in fact I don’t think I even finished the prescription and was able to take ibuprofen a week later, as needed.
Follow up on my recipient
While I never did find out the name or location of my recipient, three years after my donation I was told the little boy was okay. I recently inquired again and as far as the donor center knows, now some 8 years later, he is still alive. (Editor’s Note: A donor and patient may exchange contact information if the patient’s transplant center rules allow, it has been at least one year since transplant, and both donor and patient consent.)
If I was asked to donate again, I would do it in a heartbeat. It was well worth this experience to give a family hope for their little boy, when this was his last hope.