Every year Kevin and his fellow Be The Match immunogeneticists work closely with transplant centers to provide guidance on patient searches. When a patient with a blood cancer or disease seeks a transplant, one of the first steps involved is finding a matching donor. That’s when Kevin steps in.
His department helps transplant centers search the Be the Match Registry and other cooperative registries around the world – totaling almost 25 million donors worldwide. They also conduct research projects aimed at reducing patient time to transplant.
“Being able to take part in this process, understanding the complexity of the situation and witnessing all the people who put so much effort into helping patients, is very fulfilling,” said Kevin.
This March, Maryland resident, Linda, will be one of seven transplant advocates who will travel to Capitol Hill on behalf of the National Marrow Donor Program® (NMDP)/Be The Match®. Their mission: Urge lawmakers to increase vital funding to help more patients survive blood cancers and other diseases.
Linda, and the six other patient and donor advocates, will ask Congressional members to approve a small increase in funding for the NMDP/Be TheMatch, which operates the national Be The Match Registry® through a successful public-private partnership with the federal government.
Increasing the federal appropriation would allow the NMDP/Be The Match to recruit more donors and further expand the diversity of the registry. Federal funds also go toward helping patients navigate the complexities of the health care system when preparing for transplant, as well as supporting research to discover and apply the best therapies, and improve patient outcomes.
In 2007, Linda was diagnosed with acute lymphocytic leukemia (ALL), a type of cancer in which a certain type of white blood cells prevents the body from making enough red blood cells and platelets. Linda’s doctors told her that a bone marrow transplant was her only chance of a cure, but like most patients, the mother of three young children did not have a donor match within her family.
Linda’s medical team turned to the Be The Match Registry® in hopes of finding an unrelated donor. Ultimately, Linda’s doctors determined that an umbilical cord blood transplant was her best treatment option, and after months of waiting, Linda received her life-saving transplant in July 2008.
That’s why Linda and her fellow advocates also will ask legislators to increase federal funding for the National Cord Blood Inventory (NCBI). The increase would support efforts to improve patient access to innovative, life-saving transplants, including the recruitment of more minority mothers to donate their baby’s cord blood—giving more patients like Linda a second chance at life.
To learn more about our work on the Hill and to get involved, visit BeTheMatch.org/Advocacy.
Six-year-old Owen is a rambunctious little boy who is truly a “super hero.” Always outfitted in his signature cape, he, like other super heroes, has a story that first made him super. He wasn’t bit by a radioactive insect or rocketed from another planet, rather, he defeated some atypical ‘bad guys’—bad blood cells.
It all began when Paula, Owen’s mother, took one-year-old Owen to his regular checkup. A healthy baby, Paula was shocked when routine tests revealed Owen’s platelet count was severely low. Further tests were needed and, weeks later, the devastating diagnosis was official—myelodysplasia (MDS) with monosomy 7, a rare bone marrow disorder most common in adults over 60. Baby Owen’s only hope was a marrow transplant.
Devastated and shocked, Paula began to equip herself with knowledge. “I wanted to be able to talk to the doctors and not have the doctors talk at me,” she says.
With no matches in his family, Owen’s doctors turned to Be The Match®. Two well matched donors were quickly found, a young man from Germany stepped forward to give Owen a second chance at life.
His transplant was successful, but post-transplant complications—including adenovirus, a respiratory infection, and graft-versus-host disease (GVHD)—made Owen a very sick little boy. Despite the challenges, Owen remained playful and happy. “Even when he was at his lowest points and throwing up, Owen would simply pickup and move on,” says Paula. “We started calling him ‘Super Owen’ because of his inspiring will and courage.”
Owen’s resilience gave Paula courage as well. As a single parent, doctors and nurses spent time with Owen during their breaks so Paula could shower and eat. There were also financial complications, but Paula stayed optimistic and, thankfully, 118 days post-transplant, Owen was healthy enough to go home.
This May, Owen celebrates his 5 year transplant anniversary. Cured of his bone marrow disorder, he is a kindergartner who loves to wear capes and eat chocolate.
An avid supporter of Be The Match, Paula gives thanks for his life every day. “I don’t know if I’ll ever not feel like a cancer mom, but together we are adjusting to our new normal,” says Paula.
Join us to hear Paula share their inspirational story at our Fourth Annual Be The Match Breakfast, on March 12, 2015.
From “all-natural” supplements and special diets to meditation, massage and more, CAM can take a lot of different forms. Some are generally safe, while others can hurt you. The risks are especially high when you have a weakened immune system, have graft-versus-host disease (GVHD) or are taking prescription medicines.
Before you try anything new, be sure to talk to your health care team, including your doctor, pharmacist and registered dietitian. They can help you decide if a new approach is safe or can harm you.
Does CAM work?
The answer is maybe. When used with your doctor’s recommended care and advice, some people report CAM helps them manage their symptoms, reduce stress and improve their sense of well-being. Other people report no benefit.
Is CAM safe?
CAM practices that are generally safe include those that promote relaxation, well-being and movement, like:
- Meditation and prayer
- Guided imagery
- Art and music therapy
- Tai chi
Potentially dangerous practices include those that go against your health care provider’s advice, like:
- Quitting or substituting a doctor-recommended medicine or treatment.
- Starting vitamins, supplements or herbal products. They could make your prescription medicines not work, or increase the likelihood of dangerous side effects.
- Using certain lotions or getting too much light or sun, which could make GVHD of the skin worse.
Use caution when considering self-care practices outside of those recommended by your health care provider, like:
- Special diets. Certain foods or diets could actually be harmful. For example, even something that seems harmless, like grapefruit or grapefruit juice, can actually cause problems with some medicines.
- Acupuncture. When not performed in the right way, acupuncture could cause harm, including infections and bleeding.
- Special products or equipment, such as suspension exercise devices, which could be harmful for patients who have bone or joint problems from their disease or the transplant process.
- Chiropractic care. While often safe, it can be harmful for patients whose disease has affected their bones or for those with weakened bones from the transplant process. Talk to your doctor before having any chiropractic care.
There are a number of credible organizations that offer online resources on safety, benefits and risk of CAM including:
- National Center for Complementary and Alternative Medicine (NCCAM)
- Office of Cancer Complementary and Alternative Medicine (OCCAM)
- National Cancer Institute
Remember, no matter which CAM practices you’re considering, do your research first and talk with your health care team before you start.
There are two methods of donation: Peripheral Blood Stem Cells (PBSC) and Marrow. PBSC donation is a nonsurgical procedure that takes place at a blood center or outpatient hospital unit. Marrow donation is a surgical outpatient procedure that takes place at a hospital. Because Altonet donated marrow, she was given anesthesia and did not feel any pain throughout the procedure.
While she was sore for several days following the donation, she was able to go back to work within two days. Several months after her donation, Altonet learned that the recipient was doing well and was released from the hospital just months following the transplant.
Of her recipient, Altonet said, “the one thing she taught me was how to love a stranger. I don’t know her, but I love that she is able to endure through such a difficult time. I prayed for her more than I prayed for myself or anyone else in a long time.”
Lending Her Voice
Altonet has a compassionate heart and a passion for singing. In fact, she’s competed on three national talent shows — Star Search, American Idol and Showtime at the Apollo.
Now she is lending her voice to help others by encouraging more people — especially those from the African American community — to follow her lead by joining the Be The Match Registry and saying yes if called as a match for a patient.
Before going through the donation process, Altonet heard a lot of common myths about donation —that it is painful and dangerous. “I want people to know that each individual’s experience is uniquely theirs. Don’t listen to what you may have heard — speak with people who are able to give you correct information about the process. It’s a rewarding experience and if you are ever selected to donate bone marrow, you should definitely consider it.”
Like Altonet, you could be the cure for someone with a disease like sickle cell anemia or a blood cancer like leukemia by donating bone marrow. It only takes a few minutes to join the Be The Match Registry. If you match a patient, you could be the only one out of millions who can save that patient’s life. Learn more about donation.
Amy Strelzer Manasevit was a vibrant young mother who was diagnosed with multiple myeloma in 1993. A marrow transplant was her only hope for a cure. The search for a matching unrelated donor was long and complicated, but Amy and her family never gave up hope. Finally, a suitable donor was found, and Amy received her transplant. Unfortunately, even though the procedure was successful, it severely depleted her immune system and left her vulnerable to infection. Amy developed pneumonia and passed away six weeks after returning home.
Prior to her death, Amy turned to her father, Marty, and asked him to help others avoid her difficult struggle. He promised. In 1997, Marty, Amy’s husband Bruce, and their friends collaborated with us to establish the Amy Strelzer Manasevit Research Program for the Study of Post-Transplant Complications.
The Amy Research Program
The Amy Strelzer Manasevit Research Program bestows one of the largest and most coveted research grants in the field of marrow and cord blood transplantation. The program develops the next generation of physician-scientists by supporting and encouraging the discovery of new ways to treat and prevent post-transplant complications.
This crucial funding, distributed over three years, enables the young investigators to establish themselves as researchers and successfully compete for future grant opportunities. To date, through the Amy Research Program, Be The Match Foundation has supported 25 scholars. As a group, the Amy Scholars have been awarded $6.5 million and have leveraged their research funding to secure an additional $42 million.
What began as a promise has evolved into a program benefiting patients across the globe. Launched by family, supported by philanthropy, and furthered by research talent, the program is an exemplary model for people coming together to make a difference for patients in need.
2015 Scholar Announced
This February, two additional scholars will be awarded research scholarships:
- Frank M. Cichocki, Ph.D., University of Minnesota
- Joseph A. Pidala, M.D., Ph.D., H. Lee Moffitt Cancer Center and Research Institute
Mary and Jason know firsthand what watching a child battle for their life feels like. It feels like salt water running down cheeks and nights without sleep; like blinding hospital lights and anxiously tight hugs. For Mary and Jason, who recently started the post-transplant journey with their son, it also feels like an opportunity for good. These parents have turned the hardest experience of their lives into an opportunity to help others – an opportunity to save lives.
Mary and Jason’s journey began in June 2014, a few months after their twin boys, Lachlan and Calhoun, started daycare. “They were both getting sick frequently, but Lachlan just wasn’t bouncing back like Calhoun,” said Mary.
After a series of reoccurring ear infections, Mary and Jason brought Lachlan to a nurse practitioner. As parents, they felt something was wrong. That something, they would eventually learn, was a rare form of childhood cancer called juvenile myelomonocytic leukemia (JMML).
The news was flooring. “We were in absolute shock,” said Mary. Quickly, they jumped into action with one goal in mind – do whatever it takes to save their baby. Because JMML is so rare, with an estimated 1-2 cases per million children born, very little is known about the cancer and few treatment options are available. Lachlan’s only hope for survival was a marrow or cord blood transplant.
Unfortunately, like 70% of patients in need of a transplant, Lachlan did not have a suitable donor in his family. For this reason, Lachlan’s doctors turned to the Be The Match Registry. “Right away, we found out Lachlan had 10 matches,” said Mary.
However, Mary decided that a match wasn’t enough. The family recognized Lachlan’s experience was an opportunity for them to help others. “There are other people just like us that are waiting for a match,” she said, “Getting people to join the registry has turned into a passion of mine. Lachlan is going to make a difference for Be The Match.”
While caring for Lachlan and their 2 other sons, Mary and Jason found that helping others was what they needed to do at the time. They gathered their friends and family to hold registry drives, encouraging everyone to support Be The Match and help other patients in need.
The family held their first registry drive only weeks after Lachlan’s diagnosis. Since then, they have set up numerous drives and fundraising events. “We’ve held 6 registry drives and we have about 6 more to come,” said Mary. “There are other people out there who love their child just as much as we love Lachlan, and there are so many other people who need a match.”
Lachlan underwent his transplant in late November, and now, this family’s mission to save lives is just starting. “We were fortunate to have our donor, but we don’t feel like that’s the end of our journey with Be The Match. It’s just the beginning,” said Mary.
If you or others you know are interested in learning more about hosting registry drives or other volunteer opportunities, visit BeTheMatchVolunteer.org.
The typical time commitment for the donation process is 20-30 hours of your time spread out over a four-to-six-week period. PBSC donors receive daily injections of a drug called filgrastim for five days to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor’s blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
Read what donating PBSC was like for Mandi, in her own words.
I went in today for my first Neupogen® injection (Note: Neupogen is a brand of filgrastim). They drew some blood today and did another pregnancy test. Took my vitals and the nurse went over what to expect. I got my injections in the arms, nothing more than a little shot. I get allergy injections in my arms every 4 weeks, so this was nothing new to me. This stung just a tinge more than an allergy shot, but no big deal.
I laid low most of the day catching up on some DVR. I did notice that my stomach was a little off. I wouldn’t say nauseous, but I had no appetite. That being said, I went out to eat with an old friend and managed to eat half of my piri piri chicken dinner and a nice burrata cheese, tomato and petite basil appetizer. I can always make some room for dinner at my favorite bistro.
Sitting at the bar was uncomfortable though. My lower back is definitely sore, enough that you’re fully aware the pain is there, but not enough to stop me from going out to eat. I’m hoping that Tylenol does the trick.
This evening brings me to a different kind of pain. Rather than just an achy back and hips, the place that is most affected for me is my ribcage and sternum as well as my skull. I say skull because it’s not a typical headache, it feels like my skull hurts. When I cough or sneeze (I have bad seasonal allergies, has nothing to do with the injections) my skull hurts. But it is not persistent like a headache.
The ribcage pain as well seems to only be when I exert myself, or when I stand up from a resting position, my ribs throb a little bit until I get used to being upright. So, the pains are not a constant, and if I relax and stay on the couch with my movies, I’m okay. I also took the prescription pain meds they gave me, which helped considerably more than the Tylenol, especially on my achy back and hips.
So for day two, I experienced different pain. This is the bone pain they asked me if I had experienced. It’s not like anything else I have gone through in the past. On a scale of 1 to 10, I’d say overall around a 5 or 6, with the medication closer to a 4. I don’t want to discourage anyone from this, because it is a small price to pay and will only last a few more days. From what I’ve read, on the 5th injection day when they start to collect the cells from your blood, you leave that day feeling much better. So, until then, I will relax on the couch with my movies and kitty cats.
Today was a very good day, mild pain at times, but that was it. Primarily felt a throbbing bone pain in my rib cage whenever I went from a seated position to an upright position. Again, achy lower back and hips, but those would only be a 1 or 2 on the scale and Tylenol took care of those. I even managed to go to a BBQ and play in a cornhole tournament.
PS. Interesting factoid I learned yesterday … the recipient of my PBSC will have my blood for the rest of her life. Her blood type will become mine if it’s not already, and my DNA will be a part of her. How cool is that?
Much like yesterday, the pain is very minor. Little bit of an achy back and hips, a 2 or 3 on the scale, so I just took a few Tylenol. My ribcage doesn’t hurt like it did the last few days. The only new thing is that my hands feel a little tight.
I am looking forward to tomorrow and for the collection to begin, because that means the recipient is one step closer to her transplant.
Day 5 (Collection Day 1)
This morning I got my last Neupogen® injection and then headed to the Donor Center for the apheresis procedure.
It was very interesting. The machine was prepped and ready with saline solution in the lines. Since one line draws blood from my arm and one returns it to my body in the other arm, in order to start the circulation it had to be filled with saline. I have small veins, so one of the phlebotomists came in to hook me up which took about 10 minutes.
The machine started up and the nurse explained to me what it did. My blood came out and into a centrifuge where it separated into parts, plasma, white blood cells and stem cells. The plasma and the white/stem cells are collected in separate bags; the remainder of your blood is mixed back together and returned to your body. Also, a blood thinner is added to the blood to prevent clotting. That actually binds with calcium in your blood and the calcium depletion can cause side effects for some.
First thing I noticed was that I was cold. Your blood is running through this machine which is not heated and returned to your body, so most people get cold during the process. I had a few blankets on to help with that. Also, my lips and tip of my nose were tingly, which was from the calcium, so they put me on a calcium drip as well to help with that. Another weird feeling I got from the calcium was a vibrating sensation in my chest. It felt like my heart was vibrating along with the machine, it was very weird. I also got light-headed. The whole process took just over 4 hours.
Mom was there. She was lucky enough to have the task of itching my nose with a towel because we all know as soon as you can’t use your arms you get that itch on your face. I did feel a little bit of lower back pain and tiny bit of nausea, but that was from the last injection and the fact that I had only eaten half a bagel probably didn’t help that. I avoided any liquids this morning to try to not have to go to the bathroom during that time period. I was not successful in my quest. They went through two bags of the blood thinners which are fluids. You’re not allowed to move your arms or get out of the bed, so I’ll let you use your imagination there. Nurse assistance was needed. I’d say that was the most traumatic thing of my morning. HA!
Afterward, I felt weak and exhausted, couldn’t quite get my legs back under me fully and felt wobbly for about an hour and a half. Went straight home after and laid down. Now this evening, the shots’ side effects feel like they’re close to gone. Aside from the fatigue I may feel tomorrow afternoon, the achiness and nausea should subside from the shots.
Day 6 – Final Collection Day
Today was the last day of my donation process. No injections today, just straight to the Donor Center for my second apheresis.
Today’s procedure was much better than yesterday’s. Very little tingling, only a brief fluttering in my chest. The nausea went away and I was pretty comfortable. It seemed to go faster, only about 3 hours total, maybe a few minutes more. I was actually able to make it through today without having to go to the bathroom, but it was a race as soon as I was unhooked.
The first collection day seemed a bit scary to me and actually had me dreading going back today, but in retrospect I think it was a combination of the last shot hitting me along with the apheresis happening all at once.
Today was an easy day. I felt better right afterward, no light-headedness or wobbly legs today. My mom and I went out for breakfast after, and I’m home and feeling like my good old self. No more bone aches or headaches.
I’m a bit of a complainer (my family & friends may laugh at that one), but I was just trying to paint a picture for those of you interested. What may have seemed painful or uncomfortable for me may seem no big deal to others. In other donor’s experiences I’ve read the donors seemed to find it less uncomfortable than I did, but I wanted to paint a picture of what I went through.
Now my prayers are with the recipient, I hope that the transplant is successful and that I was able to give her the gift of life she needs for a long, healthy and happy life.
Five-time Jeopardy! Winner and Be The Match Supporter
Sarah had watched Jeopardy! her whole life. She imagined the day when she would stand under the hot Hollywood lights and amaze people question after question. One thing she never imagined, however, was that her mother wouldn’t be there sharing in Sarah’s moment.
In February 2013, Sarah’s 62 year old mother, Marilyn, received the heartbreaking news that she had acute myeloid leukemia. For months, Marilyn stayed in the hospital receiving chemotherapy. Thankfully, by summer, Marilyn went into remission and was healthy enough to watch her daughter walk down the aisle.
Marilyn’s doctors were planning on pursuing a bone marrow transplant soon after Sarah’s wedding. When no one in Marilyn’s family was a match, her doctors turned to Be The Match Registry and found a volunteer marrow donor.
“Unfortunately, shortly after my honeymoon,” Sarah said, “we found out the cancer was back. We were told she would need more chemo to try to get back into remission before the doctors could do a bone marrow transplant.” Sadly, Marilyn passed away before she could make it to transplant day.
While Sarah’s mother was unable to receive her marrow transplant, Sarah is grateful for the man who was willing to honor his commitment and help. “Having that person out there, gave us a lot of hope,” she said.
On The Air with Jeopardy!
Just two weeks after her mother’s passing, Sarah’s Jeopardy! dream came true. During the filming, Sarah made a decision. Her mother may not have been able to watch her compete, but Sarah made sure to keep Marilyn’s spirit with her throughout her five winning appearances. “My mother always wanted to give back,” said Sarah. So, she decided to use Jeopardy! as an opportunity to bring awareness to the organization that brought her family hope – Be The Match.
During her one-on-one interviews with Alex Trebek, Sarah spoke about the importance of joining the Be The Match Registry. As a direct result, she learned that some viewers were so moved that they signed up for the registry. “It’s really gratifying to feel like [my mother] made an impact on others. If I influenced someone else to join, maybe that someone will go on to save a life,” said Sarah.
Sarah has taken the tragic experience of losing her mother and turned it into a chance to prevent more losses like her own. With some of her winnings from her time on Jeopardy!, she plans to help fund donor drives to add more potential donors to the registry.
You can be an advocate like Sarah. Take a minute to learn more about our Action Advocacy Network and then sign up to join.
On September 9th Duke’s phone rang. Expecting one of his four children or his parents, he picked up the call. Instead, he heard the voice of a man he had never met – an oncologist. “I need you to come to the hospital tonight,” the doctor told Duke. He broke the news directly, “you have leukemia.”
Duke was at the hospital earlier that day being tested to determine the cause of his declining condition. He knew that something was wrong and was actually relieved to learn of the diagnosis and begin working out a treatment plan.
Shortly after arriving at the hospital that evening, Duke underwent additional testing. Within a day, his results were back. He was then faced with an even harder fact to comprehend, a fact that would shake his entire world: without immediate treatment, Duke only had a month to a month and a half to live.
That was six years ago, when Duke was 44. Thanks to a complete stranger, an ocean away, Duke is alive to share his story of faith, good fortune and, above all – survival.
The fight to survive:
Shortly after Duke was diagnosed, he started chemotherapy. Amazingly, after a year of extremely aggressive treatment, Duke was pronounced cancer free; but he wasn’t in the clear just yet. His doctors told him they were certain the cancer would come back, and when it did, the disease would be stronger and more aggressive.
Unfortunately less than nine months later, the doctors’ prognosis was right. Duke’s cancer was back, and this time, he needed more than chemotherapy to survive. “My diagnosis was aggressive, so they knew they were going to have to do something to try and save me. The doctors told me, you aren’t going to survive without a marrow transplant,” said Duke.
The search for a match began by testing Duke’s siblings. When they tested negative, his doctors turned to the Be The Match Registry. That’s when Duke won what he would later call his “lottery ticket,” – a matched marrow donor. After intensive chemotherapy to prepare his body, Duke received the transplant that saved his life.
The meeting of a lifetime:
Immediately after his transplant, Duke knew he wanted to meet the young man that gave him his life back. “In my mind, I must have painted my donor a million different ways. I had thousands of questions for him,” said Duke.
In America, if both parties agree and the transplant center allows, a donor and recipient can meet one another, but must wait one year after transplant. Because Duke’s donor was from Germany, the waiting requirement was longer. After two years, Duke was finally able to reach out to the man who, at 27, saved his life by donating Peripheral Blood Stem Cells (one of two methods of marrow donation). Duke offered his donor the opportunity to fly to Colorado so they could meet.
In October, Duke’s donor, Marco, did just that. Before he arrived, Duke had so many things he wanted to tell Marco, but most of all he wanted to say thank you. “There is a cascade effect when someone is diagnosed. It cascades to family to friends, to a huge amount of people, not just one. I wanted to make sure Marco knew that what he did affected a lot of people. I wanted my entire family to have the opportunity to give him a big hug and say thank you”
Marco and Duke spent the next 10 days together, getting to know each other and developing a deep bond. “It was definitely a connection we will maintain,” said Duke.
The blessings along the way:
When Duke looks back on his experience, he believes God had a plan for him and this faith is what helped him through the entire ordeal. “If everything was perfect, and bad things only happened to bad people, life wouldn’t be as brilliant as it is,” he said. “Bad things happen to good people too, there is no way around it, this allows us to realize just how fortunate we are.”
In addition to recognizing how fortunate he was, Duke learned something else about himself – he is stronger than he ever could have imagined. “You may think you know how you would respond to a life-changing event, but I would argue that you will never really know how strong you are until you are in the foxhole, fighting for your life,” he said.
Marco did what he promised, donated marrow to save a life. “At the end of the day, that’s what you want. You want everyone to have the chance like I did,” said Duke.