Finding the best care team can make all the difference for patients with diseases like multiple myeloma.
It’s important for patients who have been diagnosed with an uncommon cancer to see or consult an experienced medical team with expertise in treating that particular disease. However, many patients — especially those who don’t live near a large cancer center — may not know where to start.
CURE® recently spoke with Mary DeRome, director of medical communications and education at the Multiple Myeloma Research Foundation (MMRF) in Norwalk, Connecticut, about her organization’s collaboration with other cancer groups to ensure patients get the best possible treatment.
DeRome: This is really important. One of the main reasons is because of the relative rarity of multiple myeloma. Some oncologists may only see one or two patients with myeloma every year because it’s not that prevalent of a disease. And because they see so few myeloma patients, (these oncologists) might not be aware of the most modern and recent treatments and testing protocols and may not be aware of the best clinical trials that are available to their patients.
In addition, myeloma is a very complicated and heterogeneous disease, and every patient’s disease is different. So it’s really important for the right care team to be very aware of all the most modern treatments and testing.
Clearly, some patients are just not going to have the resources available to them to travel to major academic medical centers and to see a myeloma specialist as often as necessary for them. But it’s super important for every patient with myeloma to get at least a second opinion from a myeloma specialist who sees a lot of myeloma patients and is really up on the latest ... in myeloma.
Then, if a patient continues to be treated locally, it’s great if their oncologist can be in touch with this myeloma specialist (to) really stay abreast of this patient’s treatment. And then maybe they can see a specialist like once a year just to stay on track.
So "The Right Track" is something that our founder and chief mission officer Kathy Giusti has been working on up at Harvard Business School ... with a number of other nonprofit cancer organizations, including the Pancreatic Cancer Action Network, Prostate Cancer Foundation, LUNGevity and the Metastatic Breast Cancer Network. So together these five nonprofit organizations came up with steps that every patient can take to make sure that they’re moving toward their best possible outcome.
(The Right Track involves) four steps: See the right team, have the right testing done, be placed on the right treatment and share data at every step. It’s really important for patients with cancer to be seen by a specialist, either at an academic medical center or at a National Cancer Institute-designated cancer center where the doctor sees a lot of patients who have the same type of cancer — so they can be assured that their doctor knows a lot about the disease.
Then, once they’re with the right care team, it’s really important to have the right testing done. That includes genomic testing. That will enable their doctors to learn more about the subtype of the disease, which can be especially important for myeloma and can help potentially inform treatment options. (Patients can then get started on the) right treatment. The right treatment can be based on the subtype, the level of risk associated with the specific disease and the previous outcomes they may have had on other therapies.
The other important part is sharing their data every step (of the way). We always encourage patients to share their data because that will really accelerate new therapies for all patients.
Certainly, in the case of patients with myeloma, it’s really important to learn as much as they can about it and what treatments are available out there. The MMRF has a lot of education programs for patients. We have live education programs, patient webinars, materials such as our patient kits and a lot of resources on our website. Those are all great resources for patients to learn about the disease so they can advocate for their own care.
We always encourage patients to have substantive discussions with their doctor whenever possible and to ask as many questions as it takes to get the answers that allow them to understand exactly what’s happening and why they’re being treated with a certain therapeutic. We also encourage patients to reach out to resources such as the MMRF Patient Navigation Center and to ask our experienced myeloma nurses any questions they might have, which can really help them advocate for themselves and for the disease.