'the bane of a transplant patient' — for these women, surviving cancer wasn’t the end of their journey
chronic graft-versus-host disease (cgvhd) is a potential complication of stem cell and bone marrow transplants that can have far-reaching effects on patients’ quality of life
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libby goszer has been living with cgvhd for 16 years. supplied
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this story was created by content works, postmedia’s commercial content division, on behalf of a client.
when catherine spence experienced a series of recurrent skin infections in the summer of 2015, she didn’t think much of it. a busy mom to two young children with a thriving career as a family physician, spence had always been healthy and active.
even when she received a diagnosis of myelodysplastic syndrome (mds), a rare blood cancer, spence could not have predicted she would still be grappling with complications almost 10 years later. “i never imagined i would still be in and out of hospital and dealing with medical issues long after my cancer treatment was completed,” she says.
after her mds diagnosis, doctors told spence she would require several rounds of chemotherapy and a stem cell transplant to try to save her life. when the mds soon developed into acute myeloid leukemia (aml) — as can happen with up to 30 per cent of mds cases — the need for a transplant became even more urgent.
by february 2016, a donor match was found, and spence was scheduled for the transplant. before undergoing the procedure, she was told of potential side effects, including graft-versus-host disease (gvhd).
gvhd happens when the stem cells from a donor enter the recipient’s bloodstream and, in addition to destroying the cancer cells, attack healthy cells, thereby damaging tissues and organs. between 20 to 50 per cent of transplant patients develop gvhd within three years of receiving a stem cell transplant, depending on donor type and patient characteristics.
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there are two types of gvhd: acute and chronic. acute gvhd typically happens within the first few weeks after a stem cell transplant. if symptoms persist, it’s considered chronic gvhd (cgvhd) which can last anywhere from a few months to the rest of a patient’s life.
cgvhd causes the immune system to become unbalanced, leading to inflammation and fibrosis (hardening) that can affect almost any part of the body. symptoms range from mild skin rashes and stiff joints to severe difficulty breathing and swallowing food, and symptoms vary depending on which body systems are affected. due to its myriad symptoms, gvhd can sometimes go undiagnosed.
about seven months after spence’s stem cell transplant, routine blood tests led to a diagnosis of gvhd of the liver. when she subsequently began developing problems with her eyes, no one connected them to her gvhd of the liver. “i had discharge from my eyes, which was excruciatingly painful. the donor cells had destroyed my tear and oil glands, which are responsible for lubricating the eyes,” she says.
“the fatigue is overwhelming,” says catherine spence, who lives with cgvhd. supplied
after months with no diagnosis, spence says she got to the point where she was unable to open her eyes. it took an optometrist to finally determine her symptoms were caused by gvhd. she fitted spence with concave lenses, which helped with lubrication and light sensitivity. “for the first time in months, i could see. i was finally able to see my children’s faces.”
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spence’s long road toward getting a diagnosis is common among those with cgvhd. low awareness of the diverse and evolving nature of cgvhd symptoms at each stage can lead to delays in diagnosis, making treatment challenging, and potentially resulting in poor outcomes for some patients.
to manage her cgvhd, spence is in constant contact with medical specialists and is a strong advocate for keeping on top of symptoms. the disease has impacted her lungs, digestive system, mouth, skin, nails, hearing, cognitive function and muscle mass. “the symptoms and severity vary, so it can change day to day, month to month,” she says, “and the fatigue is overwhelming.”
libby goszer can relate to intense gvhd fatigue. unlike spence, goszer was diagnosed with the disease soon after receiving her stem cell transplant in 2008 to treat aml. “i had a severe body rash,” she says. “i also developed pericarditis, which is inflammation of the tissue around the heart.”
goszer was diagnosed with cgvhd after further symptoms appeared, including muscle loss and weakness in her upper thighs, dry mouth and oral sensitivity, mild liver involvement, poor stamina and chronic fatigue.
she has been living with cgvhd for 16 years. “gvhd is the bane of a transplant patient,” she says. “regardless of its severity, it impacts all aspects of your life — physical, social, psychological.”
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despite gvhd’s limitations, both goszer and spence have found ways to stay positive. “i realize that although i’ve gone through a lot, i’m alive and i’ve been able to see my children grow up,” says spence. “i’m thankful to science, medicine, my donor, my caregivers and the hospitals. it hasn’t been the smoothest track, but i’ve made it this far and i know that i’m incredibly fortunate.”
goszer says that for a long time after her transplant, she kept waiting for her life to return to some kind of normal, “but i finally came to realize that that wasn’t the goal,” she says. “the goal was to embrace creating a new normal and, in some ways, a new me.”
“it’s important when you are feeling discouraged to give yourself permission to reach out for help,” goszer adds. “that might mean talking to a friend, calling up a therapist or asking your physician for a discussion about your condition.”
february 17th is gvhd day. if you or someone you know has experienced any of these symptoms following a stem cell or bone marrow transplant, speak with your doctor. learn more about cgvhd at myeloma canada and the leukemia & lymphoma society of canada (llsc).
this story was created by healthing content works, healthing.ca’s commercial content division, on behalf of sanofi canada.
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