Matthew Matasar is a hematology and oncology specialist at Memorial Sloan-Kettering Cancer Center in New York City. He has a Translational Research Program grant through The Leukemia & Lymphoma Society and is investigating which Hodgkin lymphoma survivors are at greater risk for developing heart disease after receiving radiation therapy to the chest and what diagnostic tests are best.
What kind of research do you do?
There’s been a lot of progress in the treatment of Hodgkin lymphoma, but the treatments we use to cure the disease can lead to health problems later in life. Think of giving treatment for the disease as tossing a rock into a pond from the shore. The rock sinks to the bottom quickly, but it can take a long time for the ripples to reach you at the shoreline. Late effects from treatment are like that – it can take years, or even decades, before they become apparent. But we know that patients who get certain treatments are at increased risk, statistically, for a range of potentially serious medical illnesses. My research focuses specifically on trying to better understand who is at greater risk for getting heart disease after radiation therapy to the chest and, more importantly, what are the best tests available at finding heart disease before actual damage to the heart has occurred.
What is novel and innovative about your approach?
Our study will bring in as many as 200 long-term survivors of Hodgkin lymphoma who received radiation therapy to the chest at our center, Memorial Sloan Kettering Cancer Center. This will be the largest study of adult survivors of Hodgkin lymphoma ever performed. What’s more, we’re limiting this work to patients who don’t already have a diagnosis of heart disease. We’re looking only at healthy patients, because we’re interested in learning how to identify heart disease before heart damage occurs (seeing heart problems after the damage is done is, as you might imagine, much easier). All survivors will undergo two types of testing. First, a cardiac magnetic resonance imaging (cardiac MRI) both resting and after giving medicine to “stress” the heart, and second, an ultrasound of the heart (echocardiogram) both resting and after running on a treadmill.
Having cancer can be a lonely experience, and it’s not always so easy to find others with a similar diagnosis. Even if you could, you might not always want to talk about everything face to face.
Sometimes an online discussion board is just what you need.
The Leukemia & Lymphoma Society’s (LLS) discussion boards, where people can post messages under a pseudonym and read others’ responses, can be particularly helpful for anyone who has a hard time getting out, can’t find a local support group, or has a less common diagnosis. LLS’s boards offer more than two dozen topics to choose from, including “Newly Diagnosed,” “Young Adults,” “My Child Has Cancer,” a caregiver “lounge,” and individual boards for each blood cancer diagnosis.
By tapping into a much larger community, not bound by geography, you’re more likely to find someone meeting specific criteria or who had a similar experience, according to LLS Information Specialist Rebecca Herman, who recommends the boards as another option for support.
“They can be a good way to find others going through a similar experience and research concrete information and resources,” Herman said. “And if you’re not comfortable discussing something, this allows you to be anonymous and not have to look someone in the eye.”
Guest blogger Yelak talks about leading and directing your medical team
Who is Goliath? Goliath, in the Bible, was a giant who couldn’t be defeated because of his huge size and power. In our world of myeloma today, Goliath is the might of medical care, medical insurance, treatment options, clinical trials and all the daunting tasks of living and dealing with myeloma.
You and I, the myeloma patient or family members, are David. Unlike the story in the Bible, if we go up against Goliath one on one we’re likely to be flattened. So, we don’t do battle with Goliath; we learn to deal with Goliath. Over the last 20 years, since I was diagnosed with myeloma at age 25, I have just done that. Let me note that I am not a medical professional. I am a patient and would like to be considered a “customer” of Goliath.
When I was first diagnosed, I hadn’t even heard of multiple myeloma. I almost certainly didn’t have any idea about what treatment would be best or even what the options might be. Even physicians who come to our support group diagnosed with myeloma rarely know much about the disease -- at first. Thus, initially, I relied on what my oncologist/hematologist said I must do. Before long though, I became educated enough to form an opinion about the treatment I wanted.
Doctors are trained to take charge, and most patients, alas, don’t really want to know much. They just want to be fixed! But, if you want to lead and direct the medical team that “fixes” you, here is what I think you should do.