What you should do once a month
Whether or not you’re currently experiencing GVHD symptoms, it’s always important to look for changes. “The sooner we can treat your symptoms, the better. We want you healthy,” says Dr. Stephanie Lee, Professor of Medicine at Fred Hutchinson Cancer Research Center.
“Once a month, stand naked in front of a mirror and look at your body. Feel your skin. Look for changes. You know your body better than anyone else,” she says. “If you notice anything unusual, tell your doctor right away. Don’t ignore early symptoms of skin GVHD, which can include: a rash, itching, thickness, tightening, burning (in rare cases), or problems moving joints.
When it just won’t go away
Everett has been managing chronic GVHD of the skin for the past ten years. While his GVHD has not been severe, it’s certainly been an ongoing challenge. He experienced a defining moment many years ago with his doctor. “After a frustrating episode with my GVHD, I asked if she could just fix it and she said, ‘No. You have this.’ That’s when I really understood that this is something I would have to manage for life.”
Everett explains that the appearance of his GVHD— loss of pigment (dark and light lesions) on his face, legs and feet—can be uncomfortable at times. He works in sales and often has face-to-face interactions with clients. “It can be an issue,” he says, “People can tell something is going on.”
Scenarios like this can be difficult, but Everett says, “I’m grateful that I have the type of personality that allows me to stay positive and not sweat the small stuff.” He encourages others to have a positive attitude and to work closely with their doctor. “If you can, stay with the one doctor. And always follow doctor’s orders.” Through a referral from his transplant doctor, he’s had the same dermatologist through it all. This relationship has helped him learn to manage his GVHD in new ways, like trying different lotions and ointments prescribed by his doctor.
Dr. Lee agrees that GVHD can be challenging, but working together with your medical team and following precautions like avoiding the sun can make all the difference. “Patients can become frustrated with long-term management of GVHD— especially if treatments aren’t working as well as they once did. But don’t give up. Talk to you doctor and let us find what works best for you,” says Dr. Lee.
Team up with your doctor to find the best treatment
“Many treatments are available but it comes down to what works best for you. Sometimes that means trying different treatments regimens—what works one day may not work as well next month, so tell us how things are going and we can keep trying new things together,” Dr. Lee says. “If a treatment is not working well—don’t try to adjust it yourself, that could be dangerous. That’s what we’re here for—to help you stay healthy and feel better.”
Learn more tips to help prevent and manage GVHD or share your experience with GVHD below.
Adulthood on hold
Matt was on his way to adulthood. He had just graduated from college, was working at a bookstore, considering law school and was enjoying life with his girlfriend, Cori. That’s when he got the news that changed everything. He had cancer and needed a transplant. Suddenly, life as he knew it was put on hold.
“The world was in front of me. You go from being a carefree 20-something, to thinking you might not make it the next two years.”
In an instant, Matt’s plans for the future changed. Instead of hanging out with friends, he was living with and relying on his mom. He and Cori were spending more time as patient/caregiver than as boyfriend/girlfriend. “We used to spend our weekends going out with friends. Instead, we were at home and she was cleaning my port. It was hard to accept that this was my new reality.” Matt said.
Finding new ways to connect
During Matt’s treatment, his life was consumed with medical appointments and procedures. His friends were enjoying their lives and moving on. “I couldn’t relate to them anymore and I lost many friends. That was isolating.”
Matt had to find new ways to connect with people who could understand what he was going through. He started reaching out to others through adolescent and young adult (AYA) support groups where he found others he could relate to. Without having to explain, they understood his experience.
“Oregon Health & Science University (where he received his transplant) has a great AYA program. I was fortunate that my doctor was so involved in the AYA cancer community. He helped me connect with others like me, and that was extremely helpful. Participating in activities like the river rafting trip was really important for my recovery. Not just physically, but being able to find your new normal–finding fellow survivors who have gone through similar things–is a way to kind of regain your sanity,” Matt said.
Matt’s advice: “It can be lonely, but you are not alone. Find others in the same place as you. Find new friends who understand your story.”
Reclaiming his adulthood
Today, Matt and Cori (now his wife) are enjoying their 30s. They spend time going to movies and meeting friends for dinner. He says the transplant experience made him see things differently. “It forced me to grow-up and offered a perspective you can’t buy. So I think I have an appreciation for my life and just everything that encompasses that is really priceless.”
Kayla was a senior in high school having fun with her friends and planning her future when she got sick. She was thankful for the gifts of love and support she received from her family, but she was missing something: her friends. She had many friends, but they didn’t stay by her side during transplant. “I would pick up my phone to find someone to call. There was no one. It would have been nice to have some friends to lean on,” she says.
“My mom was there to hold my hand, which made me feel secure. My cousin prayed for me constantly, made me laugh even when I was exhausted, and kept my spirits up. My pastor’s wife kept me wanting to fight, even when I was tired and down. The nurses also made me feel like they really cared if I survived. Their words of encouragement helped me to understand what was happening to me and what to expect during my treatment,” Kayla says.
Finding peer support
Kayla found peer support through social media. Through Facebook pages like Be The Match Patients Connect and Insights e-community, she found other patients she could relate to and who understood what she’s been through.
Kayla’s advice: “You are not alone. Reach out. Try to contact other patients. It’s helpful to talk with others who’ve been through transplant. They can relate because they’ve been there.”
The new me
“I just recently started nursing school in January and completed my first semester with straight A’s. Being a patient has motivated me to want to be a nurse because I will truly understand exactly how the patient is feeling. I will be a bone marrow transplant nurse in 2015! If I hadn’t gotten sick and gone through transplant, I would have never gone to nursing school. It’s amazing how things seem so broken for so long when you’re sick, but if you just hang in there, all of the broken pieces come together into something bigger and better than I could have ever dreamed of. I am well on my way to making a difference in the lives of future transplant patients.”
“Transplant changed me completely,” she says. “I am slowly finding the ‘new me’ and realizing I am in a different place in my life now.”
Join Kayla on the Insights e-community. Start a discussion that matters to you.
Social support: tips from Insights e-community
It can be hard for others to see someone they care about go through something so difficult. You may find that some friends will distance themselves, while others are with you every step of the way. Both are normal responses to a stressful situation. Find ways to communicate openly and honestly with your friends.
So, Rocky and Allison have found the perfect place to meet: Richmond’s June 1st Be The Match® Walk+Run at Monroe Park. They don’t have any idea what each other looks or sounds like, but they know that Be The Match — a non-profit that connects marrow donors with blood cancer patients — helped them find each other once before.
Allison’s marrow runs through Rocky. She’s the reason this 57-year-old husband and father beat cancer and is alive to enjoy his family, work and golf game. “The Be The Match Walk+Run sounded like a nice way to meet, make more people aware of marrow donation and help the cause that has changed both our lives,” said Allison, 27.
The 5K, 1K and Tot Trot fundraising event highlights the need for more marrow donors. Every year, more than 12,000 patients in the U.S. are diagnosed with blood cancers like leukemia and a marrow transplant from an unrelated donor is their best hope of a cure.
In 2007, Rocky was diagnosed with a blood cancer called myelodysplastic syndrome (MDS). He needed a marrow transplant to survive, but no one in his family was a marrow match.
Rocky was all too familiar with his situation. In 1993, his older brother developed leukemia and needed a marrow transplant. Rocky donated his marrow, but sadly his brother died from post-transplant complications.
While maintaining a positive attitude, Rocky couldn’t ignore his brother’s experience and updated his medical directives and will. He knew no one in his family was going to match him. Most patients (about 70 percent) do not have a marrow donor in their family. They depend on Be The Match Registry® to find an unrelated donor.
A year earlier, Allison, then a college student, had joined the marrow registry after her cousin was diagnosed with leukemia. “I wanted to be the match for my cousin, but I wasn’t. Another donor — a stranger — saved her life.”
“When I got the call about a man, about my dad’s age, who I matched — the decision was easy. I wanted to pay it forward,” said Allison.
“It’s one thing for me to donate to my brother,” said Rocky, who received his transplant at Virginia Commonwealth University Massey Cancer Center. “But Allison didn’t know me. She went through this for a total stranger. She’s my savior. It takes a very unselfish person to do what she did.”
The Be The Match Walk+Run raises funds to support marrow transplant research, help patients with uninsured treatment costs, and add more volunteer potential marrow donors to Be The Match Registry, giving more patients hope for a cure.
Join a community transplanting hope. Help patients with blood cancers take the next step toward a life-saving marrow transplant by taking a few of your own. To register, fundraise, volunteer or support a runner or walker with a contribution, visit BeTheMatchWalkRun.org/Richmond.
To join or contribute to the Allison/Rocky Team and support all patients in need of a marrow transplant, visit: http://www.BeTheMatchFoundation.org/goto/AllisonRocky
It was in July of 2005 when Krista first learned that she had acute myeloid leukemia (AML). She had experienced severe anemia, strange/easy bruising and sinus problems, leading her to see a doctor. After her AML diagnosis and treatment, Krista was in remission for three years, until her relapse in August of 2008.
“Thank you to the Momma who made the decision to donate her baby’s cord blood.”
Krista was told that she would need a marrow transplant to live. After nearly four months of searching for a marrow match with no success, Krista’s team of doctors began searching the Be The Match Registry® for a viable cord blood donation. The Be The Match Registry partners with registries all over the globe to find matching adult donors and cord blood units for searching patients. Remarkably, a matching cord blood unit was found in Australia that had been frozen for 10 years, waiting for a match like Krista.
Before her transplant, Krista underwent a week of high-dose chemotherapy and three days of full-body radiation. “I was tied down on a board for the radiation and since I couldn’t move, I just fell asleep,” said Krista, “the days after I was quite ill from the toxins and damage.”
On the day of the transplant, Krista received an injection of the life-saving cells in her port like any normal transfusion, but during the process she got a “bad tingle” in her throat and had trouble breathing. Hospital staff was right there with Krista throughout the process to ensure her safety.
“My doctor said it was up to God because they’d done all they could do.”
Krista’s recovery was not typical, it was just plain hard as she dealt with complication after complication. She reacted so violently to the prophylactic medications (received prior to transplant) that her organs shut down. Her doctors decided to put her in a coma in order to save her life. Miraculously, Krista woke up 2 weeks later with no terrible long term damage. “My doctor said it was up to God because they’d done all they could do,” said Krista.
Unfortunately that was not all Krista went through in the first 100 days after transplant. Krista got severe mucositis that almost took her life—causing malnutrition because she was unable to eat or drink for 30 days. Krista also experienced acute and chronic graft-versus-host disease (GVHD) during this time (now under control with the right treatment plan).
After two and a half months in the hospital and a few weeks in a hotel next to the hospital, Krista was able to return home to continue her recovery.
Now, four years later, life for Krista is not completely “back to normal”, but she is adjusting just fine to her new life. “I’m doing very well. Laughing a lot, enjoying my family and learning new things…sounds like normal life,” said Krista. “I can’t run anymore and am not able to hike like I used to, but I’ve come to accept my new normal and am loving it.”
In celebration of her four-year transplant birthday, Krista held a Be The Match marrow registry drive, to help more patients like her find the life-saving marrow match that they need.
“There were extremely hard days, but through all the suffering there were many blessings,” said Krista. “Without the life-saving decision of that Australian mommy to donate her baby’s cord blood to the public registry, I wouldn’t be here today to raise my own two boys!”
To read more about Krista’s transplant journey, visit her blog.
The search for a match
After just two months, the search for a matching donor was amazingly successful. “Our doctor found five perfect, unrelated matches through the Be The Match Registry.” In June 2011, Ben received his transplant at Children’s Hospital in St. Louis, Missouri. While the pre-transplant conditioning was described by his mother, Katy as “very grueling, but manageable” the actual transplant was “beautiful, Ben slept through the entire process.”
The first 100 days
The first 100 days after transplant are critical – recipients are at risk for various complications, such as infection, graft-versus-host disease (GVHD)and even graft failure or rejection. Thankfully for Ben, while he experienced some minor infections and a few rashes, he never developed GVHD. The first 100 days were “Difficult and intense because we followed the regulations and doctor’s advice exactly,” said Ben’s mom, Katy, “but we had excellent family support and a good sense of humor and optimism.”
Adjustment to “normal” life
When Ben returned to school, he had some difficulty adjusting to school life and socializing with the other children, “because of what he went through.” But now, Ben is an outgoing, determined and intelligent boy who enjoys school and his new friends.
Today, life is back to normal for Ben and his family. “I love watching my son enjoy his life and get to do all the normal things five-year-olds do,” said Ben’s mom, Katy.
And as for Ben’s donor? “We exchange emails and are friends on Facebook. Though we live so far apart, it was amazing to learn his in-laws live only 45 miles away from us!” said Ben’s mom, Katy. Ben’s family hopes to one day meet his donor in person to say “thank you.”
Editor’s Note: A donor and patient may exchange contact information if the patient’s transplant center rules allow, it has been at least one year since transplant, and both donor and patient consent.
Like so many battling blood cancers, this 44-year-old journalist has leukemia and needs a marrow transplant, but doesn’t have a matching donor on the registry. He’s asking the nation to help him register 1,000 new African American marrow donors in the next two months. For Kevin, time is critical.
Patients are more likely to match someone who shares their ancestry and African Americans are under-represented on the registry. By adding more African Americans, patients like Kevin have a better chance at finding a match. Tell your family and friends in the African American community to join at BeTheMatch.org.
Each knows that somewhere in the world is a person who could save their life. They all have some form of blood cancer that can be treated with a marrow transplant. But none of them have a marrow match in their family and currently there is no matching donor on the Be The Match Registry®. So what’s next for them?
They’re not giving up, and you can help. Please spread the word to your family, friends and co-workers to join the Be The Match Registry today. The more people who join, the better the chances all patients have of receiving a transplant.
Thousands of patients are currently searching for a marrow match and too many, like Kevin, Carol, and Andy, are African American or multi-racial. Their odds of finding a marrow donor are lower because people who share their heritage are less represented on the Be The Match Registry. Ancestry matters. Join
Q: What effect does my treatment before transplant have on my heart?
The treatment you received before your transplant has just as much of an effect on your heart as the transplant itself. Treatments before your transplant that increase your risk of heart problems include: chemotherapy with a group of drugs called anthracyclines (doxorubicin, daunomycin, idarubicin, epirubicin) or past treatment with radiation involving the chest wall.
It is very important that you know the types of chemotherapy or radiation you received. Most transplant centers can give you a summary of your treatment history. This is a good way for you and your doctor to talk about any long-term effects that your treatment may have on your heart health.
Q: Could my personal or family health history have an impact on my heart health?
As a transplant recipient, risk factors like diabetes, hypertension, and abnormal cholesterol (that shows up after transplant) can also increase your risk of heart disease. These risk factors, combined with transplant-related treatment, can put you at a greater risk for heart issues. You should tell your health care team if there is a family history of cardiovascular disease such as heart attacks, strokes, or heart failure.
Q: What are signs and symptoms of heart problems?
Symptoms of heart problems for transplant recipients are the same as the rest of the population. Symptoms include, but are not limited to: shortness of breath, dizziness, lightheadedness or near-fainting, chest pain, swollen ankles or feet, unexplained cough and wheezing that will not improve with time, periods of heart racing or throbbing, or periods of irregular heartbeat.
Let your healthcare team know any time you have any of these symptoms or if you’re worried about your heart health.
You may not have obvious symptoms, but abnormalities can show up on routine tests, like an echocardiogram (ultrasound of the heart), EKG, or blood tests.
Q: If I have any of the symptoms mentioned, what heart problems could I have?
Blocked or scarred blood vessels of the heart (coronary artery disease), weakening of the heart muscle (cardiomyopathy or heart failure), irregular heart rate or rhythms (arrhythmias), problems with the valves within the heart (valvular problems), or scarring of the sac around the heart (pericardial disease), are all things to watch for. These health conditions are often life threatening and are one of the leading causes of death in long-term survivors of transplant.
Also, GVHD medications such as cyclosporinesteroids, and other groups of medications increase the likelihood for premature heart disease.
Q: What tests should I have to find out if I have any issues?
A good starting point is making sure your doctor has a detailed history of your health, including symptoms, family history and medications you’ve taken. Also, you’ll want to get a physical exam that checks blood pressure, heart rate, and your heart and lungs. Lastly, some doctors may want to do follow-up tests such as x-rays, echocardiograms or an EKG.
Editor’s note: Post-transplant guidelines from Be The Match® provide screening and preventative steps for transplant recipients. For your heart, the guidelines recommend:
- Checking for heart and blood vessel risk factors, such as high cholesterol, high blood pressure, obesity, history of smoking
- Discussing a “heart healthy” lifestyle (regular exercise, healthy weight, no smoking, dietary counseling)
- Receiving early treatment of risk factors such as diabetes, high blood pressure and high cholesterol
- Find out if you need to take antibiotics before a dental procedure to prevent a bacterial infection.
Q: Are young transplant recipients also at risk for heart issues?
Yes. Because transplant recipients are at a higher risk of developing heart disease than the general population, it can also occur at a much younger age. The process of developing heart issues can increase because you had pre-transplant treatment and may have other risk factors.
The good news is that younger patients who take charge of their health can really reduce their risk with lifestyle changes and medication.
Q: How can I keep my heart healthy as a transplant recipient?
You can cut down your risk of heart problems by not smoking (or quitting if you currently smoke), maintaining a healthy body weight, limiting fat in your diet to no more than 30% of calories, and exercising regularly for at least 30 minutes on most days of the week.
If you have heart risk factors such as hypertension, diabetes, or abnormal cholesterol, make sure your primary care doctor keeps an eye on your blood pressure, blood sugars and cholesterol levels.
Q: What are ways I can be proactive about my heart health?
It’s a good idea to maintain regular contact with your healthcare team, so that you can have routine screening for early heart disease. By finding any issues early, you can minimize the risk of life threatening heart problems.
Clark was Wendy’s primary caregiver as she battled ALL and MDS, and during her double cord transplant in the summer of 2009. As husband and wife, they are now back to enjoying hiking, spending time with friends and going to church.
Whether you are a patient or a caregiver, you know that going through the journey of a life-saving transplant affects your relationship with the other person, for better or worse.
Wendy and Clark say they are best friends and love spending time together. How did they manage the patient/caregiver dynamic as a married couple? How did they make it through years of chemotherapy and a transplant to arrive at a relationship that is stronger than ever?
The patient: Wendy’s perspective
The hardest part about balancing the roles of patient and spouse was realizing how much my role as a wife changed. Before transplant, I felt equal to my husband in every way and now I did not. I felt weak, less than. My husband absolutely did not make me feel that way – it was all me. However, when you can’t do the same things you used to do and need to be taken care of, it affects how you feel about yourself and the most important relationships in your life, like being a spouse.
I think the patient/caregiver dynamic will always be part of our lives to some extent, but it lessens more and more as time goes on. Clark will always be more protective over me and my health because of my diagnosis and transplant, but I’ve been able to manage all aspects of my health care by myself for three years now and it is no longer a daily issue. Clark would tell me over and over again my only job was to recover and get better. In that sense, he made it very easy for me. He wasn’t expecting me to play the same role I had before I was diagnosed. However, there are times when, as a patient, you don’t want to be in that role – you want some sense of normalcy. You just want to be a husband or wife. That is why communication is very important. You need to let your spouse know, in a loving way, of course, that you don’t want to feel like a patient all the time. At some point you want to start taking on the spouse role to feel normal and productive, and as a distraction from being a patient.
The biggest issue for me is understanding how to deal with my emotions. It is better than what it was early on, but he still has to help me out in that area on occasion (as well as seeing a counselor, occasionally). It’s important that we both feel like we can communicate freely. We each talk about our fears, frustrations, disappointments, anxieties, grieving. Each person can then appreciate what the other is going through. Many times, we are both feeling the same way. Then we can help each other and not feel so alone. In the process we became closer.
Another part of communication that few people are willing to talk about is sex. Things change after diagnosis and transplant. Talk to your doctor or a certified sex therapist (we found one who was excellent) if there are any issues in that area for either partner. That can strengthen a marriage greatly and enhance communication, self-worth and happiness.
There are a few strategies or ideas that have helped us keep our relationship strong. For example, we make time to do things that don’t revolve around anything medical; take a walk, watch a movie, play a game or go out with friends. As equally important for us is prayer and worship time together. Slowly introduce tasks that the patient can do to contribute to the daily running of the household (paying bills, fixing dinner, doing laundry) so that the patient feels productive and needed. Consider asking friends and family to help with daily chores (grocery shopping, cleaning, medical appointments) so that there is more time for relationship time. Talk to each other frankly about needs and expectations. Get outside help if you need it – from a counselor or pastor.
I believe a relationship can’t help but change after an experience like this. For us, thankfully, it deepened and strengthened our relationship. We know what each is made of now. But it does change the dynamic. We view life differently now. We have experienced life changing drastically from one moment to the next – never to be the same. That changes a person and a relationship. We make and think of plans differently; there is always a caveat. But it also makes us appreciate each other and every moment we have together and every special occasion, even more. We try not to take anything for granted and be very grateful.
The most special part was seeing my husband take on roles that he really hadn’t before, and that just deepened my love for him. For a while, he had to do everything, and he did it all without complaining. He demonstrated his love and commitment to me by doing all the mundane (and extraordinary) things on a daily basis. He was living out the vows he had professed to me 20 years earlier – in sickness and health, good times and bad.
“The line between caregiver and spouse would blur frequently. I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day.”
The caregiver: Clark’s perspective
The line between caregiver and spouse would blur frequently. I would go from being a caregiver to being a spouse back to a caregiver in the same hour. It all depended on what needed to be done. I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day. It is hard to distinguish why you are doing or saying a particular thing. Am I making dinner and doing the dishes as a spouse or a caregiver?
It was a little different for me because Wendy was diagnosed with ALL and two years before her transplant she went through HCVAD (a type of chemotherapy regimen) for eight months. The chemo was eight rounds, which required hospitalizations for 5-10 days. The caregiving role after the transplant was not that different from the caregiving role during HCVAD. Of course, I had no idea what was ahead of me as a caregiver. I was totally unprepared.
For me the hardest part of our dynamic was knowing when to be a caregiver and when to be a spouse. There were times when my wife needed one over the other. Today, I would say my role as a caregiver decreases every day. From 2007-2009 I was an active caregiver, but now it is more passive. But I think it will always be part of our relationship. When you are a caregiver for someone you have committed your life to it is hard to erase that thought pattern. Although as time goes on it becomes less and less of a thought pattern.
Communication is an excellent way to maintain a healthy relationship. Making time for each other is also very important. We walk every day together and talk about what is going on in each other’s life. Even though we now have a new normal we still have a normal life, we do the things we did before the transplant.
If I could say anything to other couples in this situation, I would tell them that I know it is hard but do not let the disease or transplant define who you are or who you are married to. This is just another bump in the road of life. I know it is a big bump but you can make it. There is a light at the end of the tunnel and it is not a train. Life will get back to a new normal and the roles of caregiver and patient will fade with time.
This experience has caused us to deepen our relationship and love for each other and there is a sense of satisfaction knowing that we went through hell together and ended up closer than before.
Who is your caregiver? And in what ways did your relationship change? Share your story