One patient describes the management of symptoms of graft-versus-host disease as playing Whac-a-Mole and emphasizes the importance of awareness and education for both patients and their families.
Managing the symptoms of graft-versus-host disease (GVHD) after undergoing a bone marrow or stem cell transplant may be comparable to controlling a wildfire if a patient is not aware of its symptoms, highlighting the importance of education on this side effect, one patient said.
In particular, GVHD is a condition during which transplanted stem cells or bone marrow attacks a patient’s healthy tissues because it sees them as foreign. CURE® spoke with Barbara Abernathy, who underwent a bone marrow transplant nine years ago for the treatment of myelodysplastic syndrome, to learn more about the importance of awareness of GVHD and an open line of communication with one’s healthcare team.
CURE®: Can you talk about your bone marrow transplant and receiving a diagnosis of GVHD?
Abernathy : Nine years ago, I was told that I needed a bone marrow transplant. And my family was tested, but none of them were a match. My father had died of leukemia when I was in college, and his mother died of leukemia five years after that. I was just grateful that there were options for me when I was diagnosed with a rare blood cancer, that bone marrow transplant was even available. (I) went to Moffitt Cancer Center in July 2013 and stayed there for about five weeks getting the chemotherapy and the stem cells. My donor was a young man from Germany who donated his stem cells to save my life.
I developed acute GVHD while I was still in the transplant unit, so it was something that I was talking with my doctor about on a daily basis. He was identifying that it was acute GVHD and managing it right on the spot, which was fantastic.
When you have a transplant, you have to stay within, literally, 15 minutes of the facility at all times. If I had been on my own and dealing with the symptoms, I don't know that I would have picked up on it so quickly.
This is one of the reasons that we're trying to bring awareness to GVHD now; patients don't know what to look for. They don't know what to bring to the attention of their doctor. So educating people about what those changes are, and that no matter how small or insignificant they might seem to me, my doctor may recognize those as early signs of acute or chronic GVHD.
Can you go into a little bit more detail about those changes that may be minor to a patient that a doctor may pick up on?
For me, one of the things was that my eyes were just so irritated and they watered all the time to a distressing degree. They were painful and irritated. The nurses in the transplant unit said, ‘No, no, it's very common for patients to have eye issues.’ But my doctor took it seriously.
He brought in an ocular specialist who was able to diagnose me with gastrointestinal acute GVHD. That manifested into some pretty significant nausea, vomiting, diarrhea. I actually was throwing up for 27 days while I was in transplant, unable to eat at all during that time.
Thankfully, my transplant doctor was skilled enough to be able to discern what might be related to chemo, what might be related to the transplant effect. He was able to see that this is more serious. I had an endoscopy to examine the tissues and get a diagnosis of acute GVHD of the intestines.
Like my doctor told me at the time, if you don't get a handle on it, it's like wildfire. It burns out of control, which is why it's so important for people to be aware of the symptoms. There are resources out there, but I think GVHD is not something that we talk about nearly enough.
Why do you think that is?
For the most part, when you get a diagnosis of blood cancer, you're really just focused on saving your life. And even though they talk to you about (how) there could be GVHD afterward, all you hear is, ‘We could save your life.’ So that takes a backseat to surviving.
Once you get through the transplant, it's like, wow, I might actually beat this. Then you start having these other symptoms, and it's like, well, this is not quite as clean and simple as I thought it was going to be. But even given everything that I've gone through, and all of the challenges that I've had with GVHD, the thing that stands out most for me is I got to live.
People ask me all the time — particularly other patients who are facing the possibility of a bone marrow transplant — would you do it again. And it does cause me to be reflective about everything I've been through. But then it comes down to just that one little thing: I got to live. That trumps everything. Nothing else matters more than that.
Everything that I'm going through now, it's all about working with my health care team, working with my doctor so that we can manage the symptoms that come up, make them manageable so that I can work, live my life and have quality of life, because that's ultimately what every patient wants.
How have you been since receiving a diagnosis of GVHD?
The one thing about GVHD is, it's kind of like Whac-a-Mole because you're managing one symptom and another one pops up. What the team tries to do is they want to give you as little treatment as possible to help manage. But as they try to back off on certain things, other things might flare up.
It really is something where you have to work very, very closely, hand in glove with your healthcare team, not be afraid to advocate for yourself and speak up. Have a healthcare team that you trust. That's so important because you have to be a team. The patient is really the one who lives in your body 100% of the time, and you're the one who notices the changes that go on. You're the one who needs to be the one to speak up and make sure that your health care team is taking those seriously.
Is care like you received for your GVHD common across the U.S.?
I think that it is common for the transplant physicians to be very knowledgeable about GVHD and the changes in symptoms. But I think patients don't necessarily understand how urgent it is for them to bring awareness to their physician about a change in symptoms because patients are just focused on something different. But yes, it is very common for the transplant team, as you come in for follow-ups, to ask about certain things, to ask about dry eyes, dry mouth, how a patient is sleeping. Fatigue is a very common symptom of GVHD that patients live with on a daily basis. There are a few specialized GVHD centers, but for the most part, patients are having their GVHD managed by their bone marrow transplant physicians.
You emphasize the importance of self-advocacy, but what other advice would you give patients?
Not only should patients educate themselves, but also their family and friends. Once you’ve got a bone marrow transplant and cancer is no longer at the forefront, the only question that people know to ask you is are you in remission? And when the answer is yes, the conversation stops. People don't know where to go from there. So to try to explain to family and friends about GVHD and how it impacts a survivors’ quality of life is so important because we are here to raise awareness of the things that patients may deal with.
What surprised you most about your experience with GVHD?
I wasn't prepared for the emotional rollercoaster of, my gosh, wow, I've survived cancer, boom, my transplant worked, now I'm cancer free. But wait, now I have this diagnosis of a chronic condition that I'm going to have to deal with possibly for life. And not only do I have a condition that impacts me on a day-to-day basis, it's something that most people have never heard of and certainly don't understand.
Most people are familiar with an organ transplant, and they understand about rejection of a heart, liver or something like that. But they don't understand that when you have a bone marrow transplant, you are gaining the immune system of your donor. And so what can happen is that immune system can begin to attack parts of the patient's body, the patient's organs, so it's kind of a reverse process. But it's extremely important and it's potentially life threatening for some people. That's why it is urgent that people understand it.
And then having the people in your life to understand it so that they can also help you watch for symptoms. Sometimes I think as patients, we just tend to power through, and we learn to not pay attention to things because if we pay too much attention to things, we can't function. But someone in your life may say, Gosh, you don't you don't seem to be breathing as well as you used to, you're slowing down, what's going on, you don't seem yourself. It makes you be reflective about what's going on, something that you can then bring to your team and discuss and see if it's something worthy of paying attention to.
Transcription edited for clarity and conciseness.
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