The Leukemia & Lymphoma Society (LLS) continually advocates for laws and policies to ensure that patients have access to lifesaving treatments. Our latest win came this summer when the U.S. House of Representatives approved the 21st Century Cures Act.
This bill, which is proof of LLS’s impact and would make a big difference for blood cancer patients, is now on Congress’ “to do” list.
The House of Representatives finished its work on the 21st Century Cures Act in July, leveraging the support of blood cancer patients and others to approve the bill with a huge, bipartisan majority. With Congress back in session, the Senate HELP Committee will now take up their version of the bill—an initiative they’ve termed “Innovation for Healthier Americans”—aimed at improving and accelerating the process to discover, develop, review, and approve new treatments for patients.
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.”