"We typically think of the disease progressing for our higher-risk patients because many of them already start with increased blasts or a lot of dysplasia. And they have these chromosomal variants that make them prone to evolving into acute myeloid leukemia (AML). With them, we can anticipate that they are going to progress to AML. And that's what we're trying to prevent. It's kind of like a biologic evolution and not a switch," ONS member Sara Tinsley-Vance, PhD, APRN, AOCN®, nurse practitioner and quality-of-life researcher at Moffitt Cancer Center in Tampa, FL, told Lenise Taylor, MN, RN, AOCNS®, TCTCN™, oncology clinical specialist at ONS, during a conversation about long-term myelodysplastic syndrome (MDS) considerations for oncology nurses.

Music Credit: "Fireflies and Stardust" by Kevin MacLeod

Licensed under Creative Commons by Attribution 3.0

Earn 0.75 contact hours of nursing continuing professional development (NCPD) by listening to the full recording and completing an evaluation at courses.ons.org by June 19, 2027. The planners and faculty for this episode have no relevant financial relationships with ineligible companies to disclose. ONS is accredited as a provider of nursing continuing professional development by the American Nurses Credentialing Center's Commission on Accreditation.

Learning outcome: Learners will report an increase in knowledge related to management of long-term side effects related to myelodysplastic syndrome and its treatment.

Episode Notes

To discuss the information in this episode with other oncology nurses, visit the ONS Communities.

To find resources for creating an ONS Podcast club in your chapter or nursing community, visit the ONS Podcast Library.

To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org.

Highlights From This Episode

"When our higher-risk patients have disease-related progression, their [malignancy] can transform to AML. And we know this occurs in about one-third of our patients and is one of the most serious late effects. Even in lower-risk disease, we have this worsening marrow failure with or without increasing blast, where [patients] may have just started out with anemia, then they also develop neutropenia and thrombocytopenia. And as those counts worsen, we usually know that their disease is progressing." TS 2:47

"The golden rule is looking at the blood count but also looking at the patient and how they're doing over time. The backbone of MDS monitoring is the complete blood cell count with the differential. What you're looking for is trends over time. How many units of blood are they receiving, what threshold are you going to transfuse them at, and how many units of blood are they getting at a time? ... And then paying attention to the absolute neutrophil count for infection risk. [Another] really important piece of when you look at the differential with patients is seeing if they have any abnormal cell counts. Do they have circulating blasts? Are those monocytes going up? If you start to see blasts circulating or increasing monocytes, then their disease could be changing, even if they have low-risk disease." TS 15:58

"For lower-risk disease, we're paying more attention to their quality of life, how the patient's tolerating therapy, trying to help them stay safe over the long haul, and starting them on iron chelation if it matches that patient and they can have access to those drugs. ... For higher-risk disease, if the patient's goal is to be cured and not to progress to AML, you want to get them to transplant if that's [also] one of their goals. If they do evolve into AML, try and see what treatment matches best for them." TS 22:28

"You want to start early for patients who have febrile neutropenia—that's really important when a patient is an hour or two away from a center where they can get started on antibiotics. So, you have to think outside the box. What can we do to keep them safe? ... I know this group in Alaska that's in our advisory meetings and they try to facilitate transportation to Seattle. That's the closest academic center to them. Collaborating with telemedicine appointments, starting earlier, developing that strong relationship with patients, and contacting them between visits [can help patients living in rural areas]." TS 25:22

"I think the biggest [psychosocial challenge] I see is a lot of unmet anxiety and depression counseling. A lot of times, [patients are] losing their place in their family because they're the ones that need all the help now. Also, the uncertainty that goes along with the diagnosis. There is communication skills counseling, and End-of-Life Nursing Education Consortium (ELNEC) has a lot of training for communication skills and how to really talk to patients. Not that we take the place of a psychologist, but just being able to talk to somebody can go a long way. And if we can get training for that, we can help more patients." TS 31:15