Jeff’s whole life changed when he was diagnosed with blood cancer. After numerous treatments, his doctor told him that his best chance for a cure was a bone marrow transplant. His doctors turned to Be The Match in search of an unrelated donor. In January of 2015, Jeff had his transplant.
One year after receiving his life-saving bone marrow transplant, Jeff has decided that an important and natural next step is advocating for others facing similar situations that he went through last year.
“I was inspired by having to face leukemia and fighting my way through the disease all the way to a successful bone marrow transplant,” Jeff said.
Currently, Jeff volunteers with Be The Match in the Peer Connect Program as a mentor for other marrow transplant recipients. Upon retiring from his law practice later this year, Jeff plans to fully enjoy his hobbies which include horses and music. He also hopes to use his law background to help advocate with legislators and insurance organizations on behalf of transplant patients and their families.
Jeff says, “After staring death in the eye and coming through that, it felt natural that I would give back to the community and help in the fight to cure cancer as well as helping others who are going through it.”
Get involved with Be The Match legislative advocacy
Transplant recipient and financial contributor Michael Stewart opens up about his relatively smooth transplant journey, and how he hopes to pay it forward to those who endure a different experience.
Michael Stewart, a husband and father of three teenage boys, is grateful for so many things in his life – including his transplant journey. In 2004, Michael was feeling fatigued, and so he set up a doctor appointment. As someone who “works too much” and travels a lot for his job, feeling tired was normal, but this time something felt “off.” Michael’s intuition was right, and after receiving lower than normal blood count tests, his doctors diagnosed him with hairy cell leukemia.
Michael received treatment for his illness, and within 6-7 weeks of treatment, everything felt like it was “back to normal.” Michael continued to be monitored for a while, but after 3-4 years they told him he no longer needed to come in for routine checks. His leukemia had come and gone, and Michael was ready to move on with his life.
Fast forward a few years, to 2013, and Michael started feeling fatigued again. He thought to himself, “I’m getting older and travelling too much… that must be it.” But just to be safe, Michael went back to his doctor. This time, his blood counts had bottomed-out. It seemed as though his hairy cell leukemia had come back. Only a few days later, Michael was admitted to the ICU with sepsis issues, which occur when the body’s immune response to an infection triggers inflammatory responses throughout the body. The inflammation brought on by sepsis can trigger a series of changes that can damage multiple organ systems, causing them to fail. It is also most dangerous in older patients or those with weakened immune systems from treatment – like Michael.
This time Michael spent more than 45 days in the hospital (with a few short visits back home), but his blood counts just weren’t bouncing back like they had in 2004. The doctors performed a biopsy of his bone marrow, which didn’t indicate anything additional was wrong. Michael again followed his intuition, and after not feeling back to 100%, he decided to meet with a doctor who specialized in hairy cell leukemia to see if he could figure out what might be wrong.
Near the end of 2013, Michael found out from his new doctor that he hadn’t suffered a re-occurrence of his hairy cell leukemia – he had in fact developed myelodysplastic syndrome (MDS). MDS affects the bone marrow and blood, causing the blood-forming cells in the marrow to slow down, or even stop, making all three types of blood cells: red blood cells, white blood cells and platelets. It was discovered that his MDS had likely been brought on by the two rounds of leukemia treatment he had received in the past, and the damage to his bone marrow was so severe that his blood counts couldn’t recover on their own. Michael’s doctor started him on a temporary treatment regimen, but the reality was, Michael would need a marrow transplant to survive.
Time for transplant
All of Michael’s siblings were tested, but none was a full match. As Michael continued his temporary treatment plan, his doctor started a search of the Be The Match Registry®, and luckily there were multiple match options identified. Although Michael felt like everything was back to normal – and his temporary treatment was working – he was told that every day he continued that treatment, his risk for developing yet another disease increased. Michael met with doctors at the Seattle Cancer Care Alliance and decided to be proactive by pursuing the marrow transplant while he was relatively healthy – knowing he would eventually need it – rather than waiting until his health stated to deteriorate. As a result, he and his family moved from Colorado to Washington to begin the process.
Although Michael had multiple match options identified through the Be The Match Registry, a few of the potential donors backed out for various reasons. Finally, a 24-year-old female – a complete stranger to Michael – came through. She was a 10 out of 10 match, and agreed to go through with donation to help save the life of someone she’d never met. Michael’s initial transplant date was scheduled for right after Thanksgiving, but after a few setbacks, it finally landed on New Year’s Eve. Michael rang in the New Year in arguably the most amazing way – receiving the life-saving marrow he desperately needed – from a complete stranger.
Michael stayed near the clinic for a few months after transplant – with regular visits to the lab and clinic every day. He was allowed to work (from home) and spend time with his family, but he had to avoid public places and his energy levels were very low. At day 12 he engrafted – meaning his body accepted the donated marrow. Around day 45, he was finally able to see his dog again. And at day 98, he got to go home … 22 days earlier than expected.
While Michael was receiving treatment, his family was always by his side. In total, they spent about 150 days living together in a new state, but they embraced the experience and to this day they even look back on it fondly. Michael’s children were able to attend school at “The Hutch” along with other children whose family members were there receiving treatment, providing a sense of community and support that helped them through that difficult time.
Michael’s recovery has been phenomenal. Today, still less than a year out from his transplant date, Michael and his family are back in their home state of Colorado, and Michael is back to working full time and traveling. While he notices a lower ability to “bounce back” after a long travel day, he otherwise feels like he’s pretty much back to normal.
Thank you is not enough
As Michael reflects on his transplant journey, he feels grateful of course, but he also feels lucky. According to Michael, he had it “easy” – too easy, and too stress-free compared to so many of those who endure a long and frightening process, sometimes without a happy ending.
“No stress, no desperate pleas for friends and family to be tested. No social media campaign. Because many people all over the world decided to take the simple step of being tested, I had a match. I have a chance, and a very good one at that, to see my three boys graduate from high school, get married, have their own kids. All because someone did something for someone they didn’t even know and may never meet.”
– Michael Stewart
That is why, when Michael decided to give a large financial contribution of $25,000 to Be The Match, he did so out of pure gratefulness. Gratefulness for his relatively smooth transplant journey and positive outcome, especially knowing he had it easier than so many.
Michael is grateful to Be The Match for providing him with access to multiple donor match options, and so grateful for his donor who never hesitated to save a stranger’s life. She donated through bone marrow extraction which took 4-6 hours. A 24-year-old who was asked to spend all day at the hospital right before New Year’s Eve said “Of course I will,” and Michael is forever grateful for that. “Thank you isn’t enough … you just can’t even put that into words”, he says.
Michael is also determined to turn his gratefulness into action. He is dedicated to furthering the mission of Be The Match through his financial contribution and awareness efforts, to help those who have a harder time finding a match – particularly those with ethnically diverse backgrounds.
Michael worked with Keith Stout, Director of Major and Planned Gifts at Be The Match, to ensure that his financial contribution could help in a number of ways – financially assisting patients and their families, adding more potential marrow donors to the registry, and helping advance research to improve transplant outcomes. Michael hopes that his contribution can help ensure that one day no one has to wonder if they will find a match, let alone survive the process.
“I am blessed and lucky that I’ve had the outcome that I’ve had. Be The Match gave me the opportunity to have lots of matches. I’m a lucky beneficiary of what had already been accomplished before I needed a transplant, and the people who were already on the registry. Now I want to help grow the registry even more, so that other people can be told they have lots and lots of matches too.”
– Michael Stewart
Interested in joining Michael in supporting Be The Match?
Join the registry – you could be the match that someone is searching for.
Give – big or small, financial gifts help continue our mission to help patients and their families.
For more information on major gift opportunities contact Keith Stout, Director of Major and Planned Gifts, at 763-406-8150 or sstout@NMDP.ORG
Taking your medicines as directed after transplant is important for your health, but it’s not easy to do.
Calley and Greg, both transplant recipients, knew that taking their medicines correctly and on time was very important. We talked with Calley and Greg to find out what worked for them.
Ila Saunders, PharmD, BCOP, sees many of the struggles people have managing medicines after transplant. We also talked to Ila to get advice from her on behalf of the Advocacy and Policy Working committee of the American Society for Blood and Marrow Transplantation (ASBMT) Pharmacy Special Interest Group.
Consider the following tips, and pick which ones work best for you.
Tip 1: Use a pill case that fits your needs
Depending on your health and treatment plan, decide whether a daily or weekly pillbox is best. Sometimes after transplant people have prescriptions that change frequently. This may be especially true in the first few months after transplant, or during treatment for complications such as graft-versus-host disease (GVHD). If your prescriptions are changing often, then a daily pillbox may be best. “You have to fill a daily pillbox every evening and you’ll be better organized when there are frequent changes to your medicines,” Ila says.
Calley had her transplant 2 years ago and now she uses a large weekly pillbox. She says this is the main way she keeps track of what medicines she needs to take. “The pillbox I have is larger than a normal one – it’s actually bigger than a standard size piece of paper. With that, I’m able to plan on filling it weekly on Sundays, and then I don’t have to worry about remembering which pills to take when during the week. This also helps to plan when medicines are going to run out. I call the pharmacist on Monday if I know that my prescription will be finished by the end of the week.”
Though it’s convenient, there are risks with a weekly pillbox. “I have seen one too many weekly pillboxes pop open. Then it’s hard to accurately identify each medicine and put it back in the correct location,” warns Ila.
Tip 2: Create a color-coded chart or system to keep track of doses and symptoms
Many people find it helpful to keep a list of all their medicines for reference. A medicine list can also be a useful way to chart and keep track of your pills. These lists may include the dose, the time and date a pill was taken, and any symptoms you have.
After Greg’s transplant in 2009, he left the hospital with nearly 30 pills to take each day. To help him manage all of the doses, he kept a binder full of spreadsheets that he would fill out and follow. “In the spreadsheet that we created, I would include spaces to check-off a medicine after I took it. I found it to be like a little success each day I could look forward to.”
Tip 3: Get help from others
There’s a lot to keep track of after transplant. Having someone to help you organize your medicines can take pressure off of you while you’re recovering. Ask your caregiver or other loved ones for help organizing your medicines, and taking them according to your doctor’s instructions.
Your transplant team can also help. For example, your transplant pharmacist can help you learn about your prescriptions, organize your pillbox, and give you a list of all your medicines. “Use a team approach! Use a system that works well for you and your loved ones. This can take the burden off of you as you recover,” Ila says.
Tip 4: Ask questions
There’s a lot to learn about your medicines. When you’re talking with your doctor or pharmacist about a new medicine, many people ask what the medicine is for and how much they have to take. You may also want to ask how to store it, if you should take it with food or not, and what to do if you miss a dose.
“I think that one of the biggest pieces of advice I could give someone is to listen to your body. If something feels off, don’t ever sit on it – there more than likely is something the doctor or pharmacist can do to either help or ease your mind,” Greg suggests.
Need more tips for managing your medicines? Talk to your doctor or pharmacist. Or call the Be The Match® Patient Support Center, which provides support, information and resources for patients, caregivers and families before, during and after transplant.
At 19 years old, Shane was making plans for his life, which included starting his second year of college. Then about a week before school started, Shane woke up feeling miserable. What seemed like a bad cold or the flu turned out to be something much more serious. Doctors found Shane’s blood counts were extremely low. He had aplastic anemia.
His doctor immediately admitted him to the hospital. After trying another treatment first, transplant was Shane’s best hope for a cure. He had his transplant just a few months later. His recovery hasn’t been easy, but his transplant journey led him down a new path that he now loves.
Here are Shane’s own words on how he found his new path:
“When I found out I had aplastic anemia it came as quite a surprise. I was a very active person, and I’d felt fine until I woke up one day with a fever and sore throat. Recovery from transplant has definitely had its ups and downs. Six months after my transplant, the steroids caused me to be about 60 pounds heavier than I’d ever been. I had some skin issues that fortunately did not turn out to be GVHD. I was going back to the hospital about once a week for checkups. It was hard to deal with.
“I was used to being social and active, and I was stuck in the house. I couldn’t be in the sunlight and I was uncomfortable in my own skin. We had to be careful with who came to see me because my immune system was still recovering, but it helped to have visits from friends.
“I didn’t always deal with the emotional aspects of recovery very well. Looking back, I should have taken better care of my mental health and reached out to a counselor or someone who could help me.
“Finally in September, I was able to start volunteering at my local community arts center again. It was a saving grace to have some responsibility outside the house. But at the same time, I was dealing with another disappointment. I couldn’t go back to college because of setbacks in my recovery. Thinking about going back was what had kept me going. I took it pretty hard, but the arts center scheduled me for more time and took me on as a volunteer intern, so that helped.
“I also started tutoring adults working on their GED. And I started volunteering at a local crisis center. Over time, the crisis center offered me a paid position. Now 3 years after transplant, I’m doing pretty well. My anxieties aren’t about my transplant anymore but like those of any 23-year-old asking, ‘What am I going to do with my life?’ I don’t feel alone anymore in feeling like, ‘What’s next?’ I love my job at the crisis center, and I’ve discovered that this is the type of work I want to keep doing in my life.
“My life took a different path than I expected, but it’s led to something good and I’m thankful for that.”
While recovery is different for everyone, most people will have one or more setbacks.
Here are 2 strategies others have found helpful to cope with setbacks:
- Meet with a counselor or therapist
- Talk about your recovery with other transplant recipients ─ at your hospital or through Be The Match®
Have questions about recovery and want to talk with someone who’s been there? Our Peer Connect program can help.
We’ll put you in touch with one of our trained volunteers — who are transplant recipients and caregivers — to answer your questions and share their own transplant experiences. The program is available to both transplant recipients and caregivers and we will do our best to find someone that most closely matches your situation (based on age, disease, etc.) Talking with other transplant recipients and caregivers can help answer questions such as:
- How long did it take to recover?
- What is your life like after transplant?
Volunteers are available to talk by phone or email. Request a connection now.
37 seasons. 256 wins. One national championship. More than 70,000 potential lives saved. These are just a few accomplishments of Andy Talley, head football coach of the Villanova Wildcats. Talley will retire from coaching following the 2016 season, but his commitment to saving the lives of those suffering from blood cancer will continue long after he walks off the field for the last time.
Answering the Call
In 1992, Talley was listening to the radio when he heard a fact that would change his life: Every three minutes, someone is diagnosed with a blood cancer, like leukemia or lymphoma. For tens of thousands of these patients a bone marrow or umbilical cord blood transplant could be their cure – yet only half receive the potentially life-saving transplant they need.
“When I heard the devastating odds of those in need of a transplant, I immediately knew that I had to do something,” Talley said. “With 90 young healthy football players on my team and the power of collegiate football behind me, I knew I could recruit donors and hopefully make an impact.”
Recognizing that his young and healthy football players had the potential to become marrow donors, and use their clout on campus to recruit others to join, Talley set out to educate his players and the community about the opportunity to save the life of a stranger by joining the Be The Match Registry®.
A Team of Ideal Donors
Talley had an important audience on his team. 18-24 year old males are the ideal bone marrow donors. In general, the younger a person is, the healthier their marrow and because men tend to have more body mass than women, they have more marrow to give.
Additionally, since patients in need of a transplant are more likely to match someone who shares their ethnic ancestry, the diversity of his team played an important role, too. Currently, African American patients have the lowest odds of finding a match compared to all other populations and make up only 6 percent of the registry, a fact that stunned Talley.
Beyond recruiting his players to join the registry, Talley began hosting donor registry drives on the Villanova campus and raising funds to cover the costs of tissue typing. At every drive, Talley emphasized how easy it is to join the registry and potentially save a life—all it takes is a swab of cheek cells; no blood is drawn. In 2008, Be The Match® approached Talley with the idea of working together to expand his on-campus drive efforts and the “Get in the Game. Save a Life” (GITG) initiative was born.
Spreading the Word
Since then, more than 75 other college football programs have enlisted to participate in GITG, which has led to nearly 71,000 new registry members, more than 300 of whom have matched with and donated to a patient in need. One of these donors is Chicago Cub and former Villanova football and baseball star, Matt Szczur, whose donation story was recently featured by ESPN.
“Coach Talley gave me the opportunity to save someone’s life,” Szczur said. “What’s more motivating than that?”
In addition to his involvement with the GITG initiative, Talley also runs The Andy Talley Bone Marrow Foundation which has donated more than $375,000 to assist with covering the costs of adding new members to the registry.
The Commitment Continues
It’s important to Coach Talley that his mission of getting more committed donors on the registry doesn’t retire when he does. His successor, Assistant Coach Mike Ferrante, sits on The Board of Directors of The Andy Talley Bone Marrow Foundation, and he will continue to share the message that anyone can save a life. And Talley plans to deepen his involvement supporting this worthy cause after his final season with the Wildcats.
“With a lot more time on my hands, I am looking forward to increasing awareness and recruiting a ton of coaches to join our Get in the Game initiative,” said Talley. “It is my dream to have every college football team nationwide host a drive and join our passion of saving lives.”
For more information about marrow donation, and the need for young men to join the registry, visit BeTheGuy.org.
As a young adult in her early twenties, Constance was embarking on the next stage of an already successful modeling career. Photos of her had already appeared in magazines, and she was beginning to work with designers from popular reality television shows.
But, the sickle cell disease (SCD) she had been coping with since birth suddenly got worse and caused her modeling career to take an unexpected detour. “I tried to work through my disease and the pain, but my body just couldn’t take it,” she says.
SCD is an inherited blood disorder where red blood cells become hard, sticky and sickle-shaped. These cells can’t carry oxygen well and they block blood flow. Patients have repeated episodes of excruciating pain and worsening permanent damage to vital organs.
So instead of runways, TV sets and photo shoots, Constance was spending more and more of her time in hospitals due to pain episodes and other harmful effects caused by the disease.
“I was either hospitalized anywhere from 3 to 10 days or rushed to the ER every month,” she recalls. “I had to bow out of the second half of my modeling contract because I couldn’t get healthy enough to even leave my house, let alone the state.”
Transplant offers hope of a cure
Today, Constance is a healthy 29-year-old ─ and one of a growing number of people with SCD who had treatment with a blood or marrow transplant, the only known cure for SCD.
Constance had transplant in 2012, when she was 25 years old. Her donor was her younger sister, Samantha, who was a 10 of 10 HLA (human leukocyte antigen) match.
Like many transplant recipients, Constance calls the day of her transplant “my new birthday” and her second chance at life. And like many transplant recipients, it also took a while for Constance to adjust to life after transplant. Constance remembers that it was only after her “first new birthday,” when she was finally off of all her medicines, that she told herself, “Okay, this is real. You have a life now.”
And her life now is very busy. Her modeling career is back on track and she’s sharing her experience with others ─ including writing a book.
Reflecting back on her time before transplant, when SCD limited her modeling career, her social life, and her plans for the future, Constance says she feels thankful every day. “I never ever could have imagined that I would have the life I have now, and that I would be able to do the things I can now.”
September is Sickle Cell Disease Awareness Month – help us spread the word by sharing our Facebook post about SCD awareness through our Patients Connect page. And to learn more about Constance’s story, visit her website at road2thecure.com.
Whether you or your loved one had a transplant, you’ve been through a lot. Even if you were very upbeat throughout treatment, it’s normal to sometimes feel down, worried or anxious after transplant.
But when feelings of anxiety, worry or feeling down won’t go away or get in the way of activities of everyday life, it’s time to ask for help. Read on to learn about symptoms of depression and anxiety, and how to ask for help.
“For the first 3 months after transplant, I was severely depressed. I was in a ‘why me’ state for a while. I didn’t want to get out of bed. My doctor prescribed antidepressants. That, along with the support of my mom, really helped.”
– Danielle, transplant recipient
Recognizing anxiety and depression
Symptoms of anxiety include feeling worried, fear or dread. Some of the symptoms of depression include:
- Sleeping more or less than usual or not being able to sleep
- Not being interested or finding pleasure in activities you used to enjoy, including sex
- Having trouble concentrating, remembering or making decisions
- Feeling guilty, hopeless, helpless or worthless
- Thoughts of hurting or killing yourself. Call the National Suicide Prevention Lifeline at (800) 273-TALK (8255) any time to talk with someone who can help.
If you’ve had any of these symptoms most days for 2 or more weeks, it can be a sign that you need to ask for help. Tell your doctor about your symptoms and ask what could help you. Your doctor might suggest a prescription medicine, talking to a therapist or both.
Sometimes it can be hard to talk about these symptoms. If you’re talking to your doctor, it might help to say, “I haven’t been feeling like myself lately. I’m concerned that I’m depressed or overly anxious.” Or, if you’re concerned about a loved one, you might say, “You don’t seem like yourself. How are you feeling?”
“I wasn’t really interested in any of the things I used to do. I was so busy trying to make it through each day that I never noticed that I had changed. My doctor explained that I was depressed and overwhelmed – and he prescribed anti-depression medicine. That helped. Both my daughters were happy to hear me laugh again.”
– Jeanette, transplant caregiver
Sometimes, anxiety is so intense after going through a very difficult experience that post-traumatic stress disorder, or PTSD, develops. If untreated, PTSD may affect your relationships and your ability to function at home, school or work.
Some of the symptoms of PTSD include:
- Reliving your experience over and over
- Feeling emotionally numb, guilty, depressed or worried
- Feeling easily startled, tense or “on edge”
These symptoms may come early in your recovery or later on. If any of these symptoms last more than a few weeks, they might be PTSD. Tell your doctor about your symptoms. Many people with PTSD get better with medicines, counseling and/or group therapy.
The search for meaning in life is part of being human. During a health crisis, it’s normal to move through an ongoing emotional process of suffering, coping and making meaning. Reflect on your transplant journey, or your loved one’s transplant journey, and how it has affected you. This can help you make sense of your situation and find meaning. Ask yourself:
- What new insights have I gained from the experience?
- What is now clear in my life that wasn’t before? What is less clear?
- How have my priorities changed?
It may help to write your thoughts and feelings in a journal, or talk about your feelings with a counselor, social worker, psychologist or faith leader. Some people find it helpful to talk with others, perhaps in a support group, who have gone through similar experiences.
If you need to talk, Be The Match patient services coordinators are available to listen, answer questions and provide support. Call 1 (888) 999-6743 or email firstname.lastname@example.org.
If you want to connect with someone who’s “been there”, the Be The Match Peer Connect program will put you in touch with one of many trained volunteers who’ve been through transplant. To request a connection, visit BeTheMatch.org/patient-peerconnect or call 1 (888) 999-6743.
It’s rare for a marrow transplant recipient to meet the Be The Match® employee who helped find their life-saving marrow match. But it happened this summer when 20-year-old transplant recipient Emily, met her Be The Match case manager, Michelle.
It all started when Emily was only 8 years old, and diagnosed with a strep infection as the likely cause of her fevers. Armed with meds to treat the problem, Emily’s parents expected a quick recovery. But that didn’t happen. Instead, Emily’s fever climbed to 104 degrees, requiring a trip to the emergency room and leading to a much more serious diagnosis: Emily had acute myeloid leukemia (AML).
Emily underwent both radiation and chemotherapy in preparation for a marrow transplant – the only hope of a cure. She received her transplant in August 2004.
Working behind the scenes
Meanwhile, at Be The Match headquarters in Minneapolis, Michelle had been managing the process for Emily’s transplant—making arrangements for Emily’s donor and overseeing all the related details. When Michelle didn’t hear any more about Emily after the transplant, she took it as a good sign. “That means everything went smoothly—the cases you remember are the ones with multiple challenges.”
And Emily’s recovery did go smoothly. Today, she’s studying speech and hearing science at the University of Illinois in Urbana-Champaign (UIUC) to become an audiologist. She also volunteers as treasurer for UIUC’s chapter of Be The Match On Campus, helping raise funds and recruit new members to the registry.
Earlier this year, Emily was awarded a service internship with Be The Match in Minneapolis—where she was delighted to meet Michelle—her own case manager from 12 years earlier.
Closing the loop
“I never expected anyone from my transplant days would still be here,” says Emily. “When we met, there were hugs and smiles.” And Michelle felt the same. “Meeting Emily was a first for me and it’s a great reminder that our work at Be The Match truly gives people a second chance,” she says. “I’m very glad Emily found her way here.”
Learn about our service internship program and other exciting volunteer opportunities at BeTheMatchVolunteer.org
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.
Shortly after her transplant for myelodysplastic syndrome (MDS) in 2014, Cindy noticed that her lips and mouth were getting dry. Soon after that, she started noticing ridges in her mouth. Both were classic signs of chronic graft-versus-host disease (GVHD) of the mouth.
Symptoms of GVHD of the mouth
“I have bumps on both sides of my mouth and the roof of my mouth, but those don’t bother me too much. My mouth and lips are so dry that eating can be difficult at times,” says Cindy.
For example, Cindy can’t eat meat, bread or thick pasta because she has trouble swallowing it.
“I don’t have enough saliva, so I can’t break down the food enough. My lips are also very dry and get tight and chapped. That can be painful,” she adds.
“There are many symptoms of chronic GVHD of the mouth, and those that Cindy experienced are quite common,” says Nathaniel S. Treister, DMD, DMSc, Chief of the Divisions of Oral Medicine and Dentistry at Brigham and Women’s Hospital and Dana-Farber Cancer Institute in Boston, Mass.
According to Dr. Treister, other common symptoms include:
- White lacy changes and patches, redness, pain and sores inside the mouth
- Sensitivity to acidic and spicy foods and drinks, or foods and drinks you can usually tolerate
- Sensitivity to toothpaste
- Difficulty opening the mouth
Diagnosing GVHD of the mouth
Chronic GVHD of the mouth happens when the donor’s cells attack the salivary (spit) glands and soft tissues in your mouth. Saliva helps you swallow your food and helps protect your teeth from decay. If the glands are destroyed or don’t work, you may get more cavities. When your soft tissues become inflamed, it can make normal activities, like eating, drinking and brushing your teeth, painful and challenging.
If you notice changes in your lips or mouth, let your transplant team or dentist know right away.
“GVHD of the mouth is one of the most common types of chronic GVHD. And, the mouth is often one of the first body systems impacted by GVHD. Treatments usually work better and can be less intense the earlier we start them,” Dr. Treister says.
Usually, your transplant team or dentist can make a diagnosis just by looking at the inside of your mouth.
Your transplant team may be able to manage your condition, however, having a dentist as part of your team is important. This is because GVHD of the mouth increases your risk for tooth decay.
Management and treatment
There are many options available to manage and treat GVHD of the mouth. Cindy found that sucking on sugar-free hard candy and drinking plenty of fluids helps her.
“I’m constantly sucking on candy, but I try to get sugar-free candy because I don’t want to get cavities. I always carry water with me, too,” she says.
To help with her dry lips, she applies moisturizers many times each day. “I’m picking dry skin from my lips all the time, so I do whatever I can to keep them moist,” Cindy shares.
Dr. Treister says many of his patients have found that chewing sugar-free gum can help stimulate the flow of saliva. Taking smaller bites and drinking fluids while eating can help if you have trouble swallowing.
Prescription topical immunosuppressant medicines for your mouth can also help reduce inflammation (redness and swelling), and make it easier to eat and drink.
“There are solutions that you swish and spit out. There are also gels and creams that can be applied to targeted areas of the mouth or dry lips. For people who have a lot of pain despite treatment, there are steroid injections that can be given directly into soft tissues in the mouth that are hurting to help ease that pain,” he says.
Cindy sees her dental team several times a year so they can keep a close eye on her oral health. It’s a practice Dr. Treister says is important for anyone, but especially someone who has chronic GVHD of the mouth.
“GVHD of the mouth significantly increases your risk of developing tooth decay. It’s important to see your dentist at least twice a year for regular dental cleaning and screening for cavities,” Dr. Treister says.
There is no way of knowing how long someone will need to be treated for GVHD of the mouth. But Dr. Treister says, “Because there are effective treatment options available, most patients will continue to have good oral health and a good quality of life as it relates to their mouth.”
For Cindy, managing GVHD of the mouth isn’t always easy, but she tries to focus on the positive.
“I’m fortunate that my GVHD has been relatively mild. During the frustrating times, I think back to what my life was like when I was going through treatment for MDS,” she says. “I’m thankful for the life I have today.”
For more information
If you’ve been diagnosed with GVHD of the mouth or would like to learn more, download Fast Facts: Chronic GVHD of the Mouth, 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 mouth, how it can be treated, how to keep your mouth and gums healthy, and when to call your doctor.