Patients with lower-risk MDS may face severe anemia, life-threatening complications, and reduced quality of life4,19
Although the clinical presentation of MDS is often nonspecific, patients usually have signs of anemia, sometimes accompanied with thrombocytopenia and neutropenia.8 The primary aim of treatment is to improve these cytopenias and manage other associated symptoms while keeping transfusion burden as low as possible.3,13
Helping ESA-ineligible patients, or patients relapsed or refractory to current treatments, achieve transfusion independence may help ease the burden of anemia in their lives.
Meet Ed and his wife and caregiver, Tracy
Ed has been living with lower-risk MDS for over 10 years. Find out about his and Tracy’s experiences navigating his diagnosis, anemia symptoms, and RBC transfusions, as well as the impact of lower-risk MDS on their lives.
— Ed, a real patient with lower-risk MDS
Ed: I’m Ed Fahey. I’m 73 years old. I have lower-risk MDS.
Tracy: I’m Tracy Fahey. I’m married to Ed. And we have been dealing with MDS for about 10 years.
Ed: I knew there was something wrong. I just didn’t have the energy level. I was fatigued all the time. I wasn’t able to do things I normally do. It was a process of going to my local doctor. Then he sent me to see a local clinical hematologist and oncologist. She said it was MDS. And she felt it was probably lower risk. We scrambled to the internet to find out what the disease was. And at that time there wasn’t a lot of information.
Tracy: His diagnosis made me feel scared for the future, mostly because, all the unknowns.
Ed: After I started going to the Center of Excellence, my treatment plan was more aggressive. And in that trial, I was on that one for 7 years. It lasted for 7 years. And after 7 years, they just, they quit, which led me to where I’m at right now. I’m transfusion dependent. So, we’re looking for something new.
It started out 3 weeks that I would need a transfusion. And then it got down to where it was, they would only give me 1 unit of blood and that would last me about 4 or 5 days. And I’d have to go get blood again. And it’s about an hour drive from our house down to where I get to the center. Every time you’ve got to get a unit of blood. It’s about an hour and a half to 2 hours per unit. It cuts into your life. Because that’s all you think about. When am I going to need blood again? You got to kind of judge your day. What you’re going to be able to do. Can I go cut the grass? Am I going to be able to wash the car today? It’s a strain on the rest of the family. We can’t go anywhere and do things. It’s not just the patient that’s affected by MDS. It’s your complete support group. My most debilitating thing with MDS has been the fatigue. I think fatigue has a lot of different aspects to it. Not just the physical, it’s mental fatigue.
Tracy: It’s been very difficult. It’s been a long road. It’s hard to watch him struggle with fatigue and not be able to do things he wants to do.
Ed: There’s other things that will enter into your life. With MDS, it’s hard to find an employer that will let you work when you feel like you can work. It impacts you financially. And being able to do the things that you want to do for your family.
Tracy: I’ve thought about, you know, getting a part-time job to help with the finances, and stuff. But, I just don’t really feel comfortable leaving him by himself. Because most of his fatigue, and stuff like that, comes on sudden.
Ed: Some of the things that have impacted my life with lower-risk MDS…I raced trotting bred ponies for years. That was something that I just got to where I couldn’t do it anymore. I’ve always loved doing stuff like that. And MDS has affected my mental capacities. As far as the ability to look long term. Because I don’t know how long I’ve got with this disease and I’m going to be around. I try to stay busy mentally and physically. I have hobbies of old cars, old motorcycles. You got to be mentally ready for disease, you know, for coping with it. It’s an everyday thing. Every morning you wake up. You’re going to think of it. There’s a lot of hope out there for everybody. And you just can’t give up.
ESA, erythropoiesis-stimulating agent; MDS, myelodysplastic syndromes; RBC, red blood cell.