From a sailboat in Puget Sound to a hospital bed; from stomping through the jungles of Cambodia to getting chemotherapy. Kristina defined herself by her zest for adventure and travel. In 2007, she was diagnosed with myelodysplastic syndrome (MDS), a disease that was discovered by chance, with no symptoms. Her disease quickly turned into acute myelogenous leukemia (AML) and doctors told her she needed a transplant as soon as possible.
Luckily, Kristina found a matching donor and had a transplant soon after diagnosis. But this was just the beginning of a long road to recover her fiercely independent sense of self and active lifestyle.
“Cancer wasn’t ever supposed to happen to me. I was attracted to living life on the edge and suddenly, I was told I was dying. Did they know who they were talking to? Maybe it was the New Yorker in me, but there was no way this was getting me down.
Going into treatment, I knew I couldn’t be the individual I’ve always been or lead the lifestyle I was so passionate about. I knew I had to accept the transition and take my recovery one day at a time. Simplifying my perspective helped me make it through that time in my life. Just as I had packed my backpack for countless trips, I decided to pack my emotional backpack and get through it. The sun will always rise again in the morning and set the next day.
After transplant, the biggest thing for me was getting back my quality of life. I knew I would get there no matter what. Though my recovery went well, I had a flare-up that was a devastating setback. I got graft-versus-host disease (GVHD) and spent so much time on the couch watching TV that it scared me. It made me realize how easy it was to curl up in a ball every day, how easy it would be to slip into feelings of self-pity.
As transplant survivors, we have to drag ourselves out of it. It took a lot of self-motivation. The first step of recovery is to just get moving. It sounds cliché to say, ‘just get up,’ but it’s true. Whether you do this alone, with a caregiver or through a program, little steps make a big impact.
I joined Team Survivor Northwest, an organization that provides fitness programs for women cancer survivors, and attended every class to help regain my quality of life. I got stronger and bonded with other women whose lives were affected by cancer.
My ‘new normal’ included my mindset, physical changes, how people reacted to me and my emotional well-being. And while I experienced many changes and realized new things about myself, I was able to get back the part of my life that I loved.
It’s amazing to live through such an experience. Look at what we, as transplant recipients, have done already! If we can beat a disease, we can get through the recovery as well.”
Regaining your sense of self
Like Kristina, you may struggle with balancing who you are now with who you were before your transplant. Think about the emotional, physical, spiritual and social changes you’ve experienced and use these changes to assess your sense of self.
- In what ways have I remained the same? In what ways have I become someone new?
- What have I gained and what have I lost through my experience?
- What can I do now to help me adjust my expectations and goals? What can I do to help my family accept these changes?
Answering these questions is a good first step toward setting your personal goals and adapting to life after transplant.
For the first few weeks after transplant, you may have expected to be tired. After all, you’d been through a lot physically and emotionally. But, if you’re still feeling extremely tired for months, or even years, after your transplant, you should talk to your health care team.
You may have chronic fatigue, and it can be treated.
“Chronic fatigue is more than the usual feeling of tiredness after exercise or not getting a good night’s sleep. It doesn’t simply go away with rest,” says Faye Bullio, ACSW, LISW-S, a blood and marrow transplant (BMT) clinical social worker at Nationwide Children’s Hospital.
Fatigue can be hard to talk about
People living with chronic fatigue after transplant may find it hard to talk about. It’s not a symptom that’s easily seen or diagnosed with a test. But, it can affect many parts of your life, including your emotions.
“Depression and fatigue often go hand in hand. When fatigue isn’t treated, it can increase your risk of feeling a sense of hopelessness. And that can lead to symptoms of depression,” says Christine Lawrence, LISW-S, a BMT social worker from the Cleveland Clinic.
Those feelings of hopelessness and depression can lower your ability or motivation to take care of yourself, says Christine. And that can lead to skipping out on physical and social activities – exactly the sort of activities that can help fight fatigue. That’s why it’s so important to talk about fatigue and treat it, she adds.
Causes of fatigue
A major cause of fatigue is the treatment just before transplant. But that fatigue usually goes away within weeks after transplant.
If you have fatigue months or years after transplant, it could be due to your medicines, poor sleep or both. For example, some medicines that treat graft-versus-host disease (GVHD) can also make it hard to sleep. Other possible causes of fatigue include pain, poor nutrition or anemia (low red blood cells).
“Feeling worried or stressed is also common after a transplant, even months or years later. And feeling worried can be exhausting,” says Faye. After transplant, children can have anxiety and stress, too.
“Children may need more support to cope with how they are feeling,” Faye says. Siblings, too, may need extra support as they adjust to life after their brother or sister’s transplant.
“If you think your child is showing signs of fatigue, be sure to tell your health care team,” Faye says. Changes in the thyroid after transplant can also cause fatigue in children, according to Faye.
Some people may not tell their health care team how fatigue is affecting them, says Christine. They may think there’s no treatment or they should be grateful for being alive. But that’s unfortunate, she says, because there may be simple ways to help you have more energy. Your transplant doctor might be able to make changes to your medicines or treat other causes of fatigue.
According to Christine, studies show that cognitive behavior therapy (CBT) can help ease some fatigue. People treated with CBT work with a trained counselor to learn how to re-frame negative thoughts into a more positive outlook.
Other tips to cope with fatigue include:
- Eat a nutritious diet and do light exercise, like walking, every day. This can improve your mood and sleep
- Start a journal. Write down when you had the most energy, and then schedule activities for those times
- Use relaxation techniques, visual imagery, meditation, or spiritual practices to ease anxiety and stress
- Attend a support group to learn how other people were able to manage fatigue after transplant
- Talk with a trained professional, like a counselor or therapist, about your thoughts and feelings. If you also have symptoms of depression, treatment for that may also lessen fatigue
Faye recommends similar strategies for treating fatigue in children. Be sure to set realistic, age-appropriate goals and activities.
Finally, both social workers emphasize that caregivers can suffer from fatigue, too. If you’re a caregiver experiencing fatigue, seek treatment if you feel overwhelmed.
Are you a transplant patient who had fatigue after your transplant? If so, please share your insights in the comments below on what helped (and what didn’t help) you fight your fatigue.
After transplant, some recipients, their families or friends look for ways to help other people who need a transplant. An improved online tool helps you do just that. It’s called Team Be The Match.
Anyone can set up a page to raise money to mark special occasions, like a transplant birthday, running a marathon or honoring a loved one. The money raised through Team Be The Match helps:
- People pay for transplant costs
- Cover the costs to add more people to the registry
- Fund transplant research
Many transplant recipients use Team Be The Match to help raise awareness among their family and friends, while also paying it forward.
In 2009, Bob had a transplant from an unrelated donor. After his transplant, he wanted to find a way to help future transplant recipients. Over the past 5 years, Bob has biked over 10,000 miles with his cycling team, Team Lifeblood, for the fight against cancer. Bob uses his Team Be The Match page to share updates on Team Lifeblood’s cycling plans, and raise money for Be The Match®. Check out Bob’s “Team Lifeblood” page here.
Jeff’s Birthday Wish
In the fall of 2015, Jeff celebrated his 2nd “birthday” since receiving the transplant that saved his life. In celebration, Jeff created a Team Be The Match fundraising page. Jeff is already a Be The Match volunteer, but his Team Be The Match page helps him rally his family and friends in support of Be The Match. Check out Jeff’s “birthday” page.
Through their personal journeys and fundraising, Bob and Jeff are helping other patients get the transplant they need. Learn more about Team Be The Match and how you can start your own page.
Jason Solomon was shocked when he was diagnosed with myelodysplasia (MDS) – often referred to as “pre-leukemia.” He was 59 years old and always healthy.
As a physician, Jason immediately spent time researching options and consulting with experts. Before a year had passed, the disease continued to progress and Jason began exploring bone marrow transplant options, where he found a perfect match on the registry.
On the other side of the country, a young man, Brandon Perloff, received the news that he was a match for a 59-year old male with a blood cancer.
Brandon had joined the Be The Match registry at a community drive a few years earlier that his mother was supporting. When contacted, Brandon shares, “I was excited! This was a unique opportunity and there was no question I would do it.”
Two weeks prior to Jason’s planned departure to Fred Hutchinson Cancer Research Center in Seattle for transplant, he caught his finger in a car door and the bleeding did not stop for over a day. Subsequent tests confirmed their worst fears: his MDS had converted to acute myeloid leukemia (AML).
The transplant would now need to be delayed by three to four months in order for chemotherapy treatments to achieve remission prior to transplant.
On December 23, 2010, Jason was able to undergo his transplant. He clearly remembers the party hat he was given and his nurses singing “Happy Birthday” to celebrate his new birthday.
As the infusion was completed with Brandon’s blood stem cells, Jason was on his way, hopeful for a healthy future with his wife and two adult sons. “I had to let go of planning and embrace a ‘one day at a time’ mindset,” says Jason, “but thinking about the future possibilities was also exciting.”
During the first year of recovery, Jason wondered about his lifesaving marrow donor.
On his one year anniversary of transplant, Jason sent a letter to his donor hoping he would respond. When the coordinator called Jason and gave him Brandon’s name, the two connected and began to realize a miraculous set of coincidences was unfolding.
First, Brandon was from Philadelphia, Jason’s hometown! They later learned that Brandon’s mom had gone to the same high school with Jason, just one year behind him and had memories of attending gatherings together. Jason had also met Brandon’s dad at Temple University 40 years before when both were undergraduates studying. A cadre of elementary school friends would come into focus as they delved further into the past culminating with Brandon’s godmother, a close family friend, was actually Jason’s first cousin!
Now celebrating five years of a new lease on life, Jason smiles in amazement at all that has transpired and the connection he and Brandon share. Jason marvels, “You just never know. Join the registry. Be The Match. Save a life. Meet a relative!”
Join us in the fight against cancer today at join.bethematch.org
Regina’s son Billy was like most eighth graders -– he loved exploring outdoors in the Florida sun and participating in sports. He was a healthy, happy kid living his life. But in October 2012, everything changed.
Billy went to the doctor with swollen lymph nodes. Doctors suspected leukemia as the cause, but blood tests showed no sign of the disease. Regina still felt something wasn’t right. After many doctor visits with different specialists, an oral surgeon told Regina he’d never seen a case like Billy’s and to press for a biopsy.
It took two biopsies, but their worst fears were confirmed –- Billy had acute lymphoblastic leukemia (ALL). The cancerous cells were growing quickly and crowding out his bone marrow.
Frustrating treatment results
The day after Billy’s diagnosis, the family packed their bags and headed to treatment. Treatment in children with ALL typically reduces the number of leukemia cells within the first month and eventually leads to remission. This was promising to Regina as she watched her son fight this terrible disease. But Billy didn’t respond to the treatment as most children do. By the end of the treatment period, Billy still had far more leukemia cells than most kids who have the same treatment.
As a mother, Regina struggled to watch her son miss the milestones that they were so certain he would hit. Their family tried to be patient as treatment entered the consolidation phase–- but still, Billy’s cancer wasn’t responding the way it should. So, Regina turned to the internet to discover why the treatment wasn’t working for her son. After a doctor noted some unusual markers in Billy’s blood, Regina began to research.
During her online quest for answers, Regina found a study on kids with leukemia that addressed why they hadn’t survived. The study discovered a small percentage of children with leukemia had something in common: unusual markers within their blood. They labeled this as a subset of ALL –- Early T-Cell Precursor Leukemia (ETP) -– and Billy fell into that subset because of his unusual blood markers. Billy’s doctors agreed that Billy had this subset of ALL, which is why he didn’t respond to treatment like most children.
All of the research about ETP pointed to marrow transplant for survival. Regina knew this was their only option, so while Billy continued treatment to get as close to remission as possible, she again turned to the internet for answers.
A life-changing cross-country connection
Regina was invited into an online Facebook group called “Momcology.” The group consisted of parents whose children had some form of cancer, and it served as a support group and forum for questions, connections and a venue to vent. After learning of her son’s unique ETP diagnosis, Regina posted in the Momcology group to ask if anyone knew of this subset of ALL. At first, Regina didn’t receive a response –- in this group of thousands, it seemed like no one else shared her rare connection. But then Regina heard from Sara, a mom from Minnesota, whose son received the same diagnosis as Billy. Sara was just as surprised as Regina to find another person who shared this rare connection.
Regina contacted Sara, hoping she had a suggestion they hadn’t yet pursued. Regina was already contacting hospitals for Billy’s inevitable marrow transplant when Sara suggested the University of Minnesota (U of MN), where her son had his marrow transplant.
Regina called the U of MN transplant doctor, but her call went straight to voicemail. Discouraged, she left a message. Minutes later, her phone rang -– it was the transplant doctor returning her call from an airport tarmac, ready to depart for a flight to Africa. It was fate. As his plane was boarding, Regina and the doctor discussed options and next steps for Billy. The best option for Billy was a cord blood transplant.
In early 2013, Billy finally received his life-saving transplant.
Looking back and paying it forward
In addition to having a great team of doctors, Regina is grateful for the connections she made in the Momcology group, and specifically for the connection she made with Sara. Without it, Billy’s future was uncertain.
“To parents and family members in similar situations: do not be afraid to reach out, because there is power in sharing,” said Regina. “Technology and research are changing at such a fast pace, you never know what you’re going to learn. And when parents band together to share all of that energy and research, it’s a powerful thing. If you haven’t found an answer –- maybe another parent has –- and that’s the power. Because you’re all in this for the same reason: to help heal your child.”
Today, Billy is back to living his life and looking forward to his upcoming 18th birthday later this year. The transplant process has given Billy a stronger desire to help others through volunteering and mission work. The entire process has had a profound impact on his life, and the lives of his family members -– and they are forever grateful for the power of connecting that helped save Billy’s life.
“The awareness of my mortality and appreciation of my physical health has changed everything for me,” said Rachel, marrow transplant recipient.
Rachel had a bright future ahead of her. She had recently graduated with a master’s degree in education and started a new job as a first grade teacher. She was dating her future husband, Eli, and was living a vibrant life in New York. Despite all the positive things going on in her life, she started to feel worn down.
“I was feeling very exhausted and everyone was saying ‘It makes sense that working and going to school wore you out – your body needs to rest from all of the stress!’” said RacheI. “I thought that was probably what was going on.”
This assumption quickly changed when Rachel’s acupuncturist noticed something off about her. She told Rachel that she was showing symptoms of anemia and should check in with her physician. Rachel made an appointment with her doctor, went in for some blood work, and then carried on with life as usual, with some apprehension as she waited for the results.
The day that changed Rachel’s life forever began normally – she went to work, and then out with a friend. It wasn’t until that night when she noticed numerous missed calls from her doctor. She called back and was told she was very anemic and needed to come see her doctor first thing in the morning.
The following morning, Rachel’s doctor explained that her blood counts were abnormal. She told her to go home and pack an overnight bag, and explained that if they couldn’t get her in to see a hematologist that day, she would need to go to the emergency room. Rachel didn’t hear the word “cancer” until a hematologist/oncologist called to tell her that there was a bed waiting for her in the hospital and she would be admitted that afternoon.
“I had known subconsciously for so long that something was wrong, but I was shocked and confused,” Rachel said.
At 27 years old, Rachel learned that she had acute myeloid leukemia (AML).
Rachel spent a total of six weeks in the hospital for several rounds of chemotherapy. Ultimately, it was determined that the best possible outcome for the specific type of AML that Rachel had would be a marrow transplant.
Tanya, Rachel’s older sister, was typed in the hope that she was a match. But like so many patients suffering with blood cancers like leukemia and lymphoma, Rachel did not have a marrow match in her family. That’s when her doctors turned to the Be The Match Registry® to find her life-saving match.
Across the country, in California, lived Rachel’s second chance at life: her donor Tamar. Tamar joined the registry at a marrow drive organized for her boyfriend who had Hodgkin lymphoma. Tamar was not a match for her boyfriend, but remained on the registry. Several years passed and Tamar forgot that she’d even joined the registry when she received the call about a patient who needed her marrow.
“I felt like it was an absolute no-brainer to go through the screening and potentially donate my marrow. I would want someone to do the same for me if I was sick. I also learned more about the statistics of finding a match, and how rare it is when someone finds a perfect match. I couldn’t not do it,” Tamar said.
While Tamar moved forward with donation, Rachel underwent chemotherapy and radiation to prepare her so her body would be ready to receive Tamar’s life-saving marrow. Through all this, Rachel’s supportive friends and family provided critical emotional support and assured her of the love that surrounded her. And while her family worked hard to stay strong for her during such a trying time, Rachel also proved to be a calm presence for her family, even though she was fighting for her life.
“I have incredible admiration for my sister,” Tanya said. “She moved through her illness with such incredible grace. She was so accepting of her diagnosis and never once said, ‘Why me? Why did this happen to me?’ I never saw her go through a period of denial. Rachel fought the illness but not the reality of what was happening.”
Rachel finally received her marrow transplant only months after being diagnosed. The transplant was a success, and she was incredibly relieved when she was finally well enough to leave the hospital. “The first day I was back in my parent’s apartment, just walking around, feeling the hardwood floors beneath my feet, I thought it was the best thing ever,” said Rachel.
The months that followed were difficult as her body worked to accept her new immune system. Rachel experienced graft-versus-host-disease (GVHD), a condition that occurs when marrow attacks its recipient. This resulted in several more months of additional treatments and hospitalizations.
Rachel began communicating with Tamar about a year-and-a-half after her transplant, and soon they decided to meet for the first time. Rachel struggled with how to express her gratitude to Tamar during their first meeting. She tried thinking of gifts to give her, but nothing she could buy or make felt just right. She finally decided to do the only thing that made sense to communicate the depth of her gratitude to Tamar.
Before meeting with Tamar, Rachel asked family and friends to write personal notes to her marrow donor. At their first meeting, Rachel gave the notes to Tamar in a jar. That night, Tamar read each note, and was incredibly overwhelmed by the gratitude and loving messages she read.
“Whenever I feel really down in the dumps, I empty the jar and read all the notes. It makes me remember that I saved a life, that Rachel might not be here without me, and that I have a purpose and made an impact,” said Tamar. “Other than having my daughter, being a donor is the thing I am most proud of in my life.”
Their experience with Rachel’s illness has inspired Susan and Don, Rachel’s parents, to give back. They recognize the need for more registry members of varied ethnic backgrounds, and that patients with rare genetic typing have greater difficulties finding a match. Susan and Don set out to raise funds to help these patients by creating a Team Be The Match page in Tamar’s honor.
“We felt incredible gratitude for the gift of life Rachel received and we wanted as many others as possible to have the same opportunity,” said Susan.
Rachel has also given back by participating in the Leukemia and Lymphoma Society’s Team-In-Training program. She also trained as a health coach so that she could support other young adult cancer survivors transition into living well after cancer.
Rachel continues to work with students but has shifted her focus since her illness. “Since I’ve returned to teaching I’ve found that I am most interested in the inner lives of my students and the teachers with whom I work. I am passionate about teachers and students learning the tools of self-awareness and connection so that they can live well and appreciate life in the moment.”
Going through a serious illness can affect your relationship with your partner in different ways. For some couples, it can be difficult to regain the intimacy they once had. But, there are steps you can take to build intimacy in your relationship. It starts with good communication.
Share your feelings
Open, honest communication helps build emotional intimacy. Tell your partner how you’re feeling both physically and emotionally. This can help build physical intimacy, even if you and your partner have different levels of interest in sex. A few questions to help you and your partner talk about your relationship include:
- How is your communication? Has it changed?
- Do you share the same expectations about recovery from transplant?
- Have your roles changed? How do you feel about that?
Open communication can help you work through your feelings together. Then, you can find ways to share physical intimacy with or without sexual intercourse.
Express your love and affection
There are many ways you can be intimate with your partner. To express your love and affection for each other you might:
- Give each other a massage
- Hold hands while going for a walk
- Have dinner by candlelight
- Tell each other what you love about the other
- Experiment with your partner and enjoy getting to know each other intimately again
Cope with changes in body image
Your treatment and recovery likely caused physical changes in the way your body looks. This can make some people feel embarrassed, angry or ashamed. These feelings are normal. It may help to focus on your strengths and what is beautiful about you on the inside, too.
You may find that your partner is much less concerned by your body changes than you imagine. Open communication with your partner can help you feel more relaxed and accepting of changes to your body.
Dating after transplant
If you are a single adult, you may worry or feel uncertain about dating. It’s not uncommon to be nervous about starting a new relationship after a serious illness. But worry shouldn’t keep you from dating if you’re ready to do so.
If someone rejects you because of what you’ve been through, that person is probably not the right partner for you. Someone who truly cares about you will accept you for who you are.
When the time feels right to you, tell your partner about your transplant experience. Some people are ready to talk about their experiences with a potential partner right away. Others feel more comfortable waiting until they’ve gotten to know someone a little better.
Ask for help if you need it
It’s common for people to have trouble working through intimacy difficulties on their own. Talk to your doctors and nurses about any problems you’re having. Talking about your sex life might feel embarrassing, but most doctors and nurses are used to talking about this subject. They may be able to answer your questions and provide reassurance.
“In my personal experience, doctors are comfortable talking about sex, but YOU have to bring it up,” says Wendy, transplant recipient.
You may find it helpful to write down your questions before meeting with your doctor.
If you’re comfortable doing so, you may want to see a professional sex therapist or counselor. This person can help you and your partner find ways to regain intimacy.
Resources for you
Along with talking to your doctors and nurses, there are many online resources available to help you learn more about regaining intimacy after a serious illness:
- Cancer.net provides information on dating and intimacy after cancer treatment as well as coping with changes to sexual health after cancer treatment.
- BMT InfoNet offers information and webcasts about sexuality after transplant.
- CancerCare provides information and resources on relationship and intimacy issues related to cancer.
- The National Cancer Institute offers information and resources on sexuality, body image changes and dating after cancer.
Doctors often use survival as the measure of a successful transplant. But, we want to know which parts of life after transplant beyond survival mean the most to BMT patients.
We’re leading a project to guide research on the information about transplant outcomes (results) that matter most to patients and their caregivers. We want to know the kind of outcomes information that would have been most helpful to patients preparing for transplant and life after.
For example, is it what a patient’s quality of life would be like? When a patient could go back to work or school? Or, is it something else?
What we learn may help doctors better prepare future BMT patients for life after transplant. Also, it may help patients and their families make better informed decisions about their treatment.
First: Earlier this year, a group of doctors, researchers, transplant recipients and caregivers met to talk about transplant outcomes and to gather feedback. The recipients and caregivers shared their stories, and explained how transplant teams can better prepare patients and their families for transplant and survivorship. The researchers talked about different ways to measure how healthy patients feel after transplant.
Second: They broke into small groups to talk about the types of patient-reported outcomes that could be studied and improved. Patient-reported outcomes are what you tell doctors about your health and how you’re feeling. For example:
- Physical health and fatigue (feeling very tired)
- The ability to think about, learn and remember information
- Emotional health, lifestyle and return to work or school
- Having enough information about transplant and survivorship
Next: Working groups of patients and caregivers, health care professionals and researchers are meeting to develop research questions related to patient-reported outcomes. They’ll come together again at a conference in December to share those questions. If you live in the San Diego area, watch for information later this year on how you can participate in this meeting.
Once the questions have been finalized, research is expected to begin in late 2017.
This project is paid for, in part, by the Patient-Centered Outcomes Research Institute (PCORI). PCORI gives money to support projects like ours. These projects give patients, their caregivers and health professionals the information they need to make the best decisions about health and health care.
To learn more about this project, email the project coordinator Kate Houg, Health Services Research Assistant, at email@example.com
When describing his recovery after transplant for acute myelogenous leukemia (AML) in 2012, Amit says there were many challenges along the way. “Recovery was at times slow and difficult,” he says. One of the hardest times was when he got graft-versus-host disease (GVHD) of the skin.
“It was mostly extreme dryness and itchiness on my legs,” says Amit. When he saw these signs, he called his transplant doctor right away. His doctor asked Amit questions and asked to see photos of the affected skin. Because he wasn’t living near his transplant center when he got GVHD of the skin, a local doctor treated him. But Amit’s local doctor worked with his transplant team.
Symptoms of GVHD of the skin
Transplant doctors stress that finding GVHD early makes it more likely that treatment will work. “I encourage patients to be proactive. Look at your skin regularly for early signs or symptoms of GVHD,” says Edward Cowen, MD, in the Dermatology Branch of the Center for Cancer Research at the National Cancer Institutes.
“Keep an eye out for any new skin rash or red, dry itchy skin. These are all signs of GVHD of the skin,” he says.
To diagnose GVHD of the skin, your doctor will check your whole body for:
- Color changes (red, pink, purple, brown or white)
- Thinning or thickening of the skin
- Hardening of the skin
- Rashes, scaly areas, bumps, sores or blisters
GVHD of the skin may cause the skin to itch, feel like a sunburn or feel “woody” like a stick. Some people with GVHD of the skin may feel a pulling or tightening underneath the skin.
Sclerotic chronic GVHD is a specific type of skin GVHD. “Sclerotic” means thickening. This form of skin GVHD causes thickening, tightness and hardening of the skin and deeper tissues. Sclerosis can also make it hard to move your joints.
Treating GVHD of the skin
If doctors diagnose GVHD of the skin, a common first treatment is an immunosuppressant medicine. This is a type of medicine that holds back your immune system. It may be something you take by mouth or by injection. It can help reduce inflammation (redness and swelling), ease any sclerosis may you already have, and prevent new sclerosis. Your doctor might also prescribe immunosuppressive creams or lotions that you rub on your skin, which can ease symptoms such as itch or rash.
Amit’s treatment began with oral steroids. But when the GVHD didn’t get better, Amit had to spend a couple of weeks applying steroid cream all over his body. He wore a plastic body suit to sleep so the cream would work better. “It was a miserable physical sensation, and it made it really hard to get rest,” says Amit. “But it worked!”
Living with GVHD of the skin
Amit says that acting quickly when he saw the signs of his GVHD of the skin was key to his successful recovery. “I’m doing great!” he says.
To keep himself healthy and to lower the chance that his GVHD will return, Amit follows this important bit of advice: Stay out of the sun. Sun exposure can make chronic GVHD worse and cause skin cancer and sun damage. So he is extra careful to use sunscreen and to wear sun-protective clothes.
Amit has no major lasting effects from his GVHD of the skin. But he does have some slight skin roughness. He adds that this may be due to the psoriasis that he has had for quite a while. Best of all he currently has no itching, which he says is a very big deal and has greatly improved his quality of life.
And he offers this advice to transplant recipients who either are coping with GVHD of the skin now or are concerned that they may experience it. “Talk to your doctor, of course. But also be patient with the treatment course,” he says. “It can take time, but in my experience it does work eventually.”
Resources for you
If you’ve been diagnosed with GVHD of the skin or would like to learn more, download Fast Facts: Chronic GVHD of the Skin, developed by Be The Match® and the Chronic Graft-versus-Host Disease Consortium. The fact sheet offers information on how to ease symptoms of GVHD of the skin, how it can be treated and when to call your doctor.
Also, Dr. Cowen shares this free fact sheet for patients on GVHD of the skin. The fact sheet is published in the Journal of the American Medical Association Dermatology and has information on symptoms and treatment.
Burnsville resident Henry was a typical three-year-old who enjoyed playing with trains, riding his bike and swimming in lakes—until December 2015 when he and his family received some unexpected news.
Henry had been battling cold symptoms on and off for quite some time, and his parents thought he was just getting sick from the other kids at daycare. However, when the antibiotics didn’t work, Henry went back to the doctor where his blood work showed his white blood cell count was abnormally high. Doctors said he needed to go the hospital for more testing—and the results were shocking. Henry was diagnosed with acute myeloid leukemia.
“It all happened so fast,” said Henry’s mother, Kristina. “We had the doctor’s appointment late in the afternoon and were admitted to the hospital that night.”
Henry immediately began chemotherapy and his doctors determined that his best chance for a cure was a marrow or umbilical cord blood transplant. Like 70 percent of patients, Henry did not have a fully matched donor in his family, so his doctors turned to the Be The Match Registry®, the world’s largest and most diverse listing of potential marrow and blood stem cell donors, in hopes of finding an unrelated donor match.
Within a few months, Henry’s doctors found two matching cord blood units on the registry. This month, he finally received his potentially life-saving transplant after completing one final round of chemotherapy.
“Henry’s diagnosis put everything in perspective,” said Kristina. “Things that mattered before don’t matter as much anymore, and we are so thankful for the amount of love and support we’ve received throughout this entire process.”
Henry’s family is sharing his story to bring awareness to the importance of marrow donors and encourage more people to participate in the Minneapolis Be The Match® Walk+Run on Saturday, May 14 at Lake Harriet. The 5K, 1K and Tot Trot 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.