“We desperately need more research, clinical trials, and drugs approved. There’s so little out there right now that’s released and available to MPN people. I’m hoping that more research and drugs come out in the next five years, other than a stem cell transplant, and I hope more people will donate funds to research."
Darlene Young Myelofibrosis Patient
Valuing each day as it comes
Darlene Young spends her days nestled on four acres in the Stanislaus National Forest, just outside Yosemite National Park, with her husband Alex and two Dobermen Pinschers. She is also a mother of three grown children, has nine grandchildren, and is a former American Kennel Club judge. Darlene was diagnosed with Myelofibrosis in 2013 after a routine physical showed an elevated white count and an enlarged spleen. She considers herself fortunate that her intermediate stage 2 Myelofibrosis has not progressed. Her current treatment is Jakifi, and Procrit to boost her hemoglobin. Although she’s anemic, Darlene says she’s still able to clean her own home and mow her lawn, but she still naps a few times a week to manage the fatigue. “I feel pretty good; I have a neurological issue and partial paralysis of the right side from a pinched nerve. This causes me more aggravation than the Myelofibrosis,” she says.
Seeing an MPN specialist is essential to Darlene; four times a year, she makes the five and a half-hour drive to meet with a specialist at Stanford University Hospital in Palo Alto, California. The journey is worth it as it gives Darlene the peace of mind that she is on the right course of treatment, and she’s also able to spend time with her daughter, who lives near the hospital, on these trips.
To stay connected with other patients, Darlene attends a twice-monthly cancer support group and is also active with online Myelofibrosis support groups. She finds these groups helpful in the knowledge and support they provide and wants other MPN patients to remain hopeful too. “There is always hope. Many clinical trials are going on as we speak, and new drugs are coming out on the market yearly. Remember, you need to honor the fatigue when it sets in, but take advantage of the good days without overdoing yourself,” she says.
The first year of her diagnosis, Darlene admits she was obsessed with what was going to happen to her, but then had the realization she couldn’t go on this way when she felt fine. “Why dwell on something that isn’t there yet? I finally decided to go on about my business and did some cruises and trips, and I’m glad I did. There is no date stamped on the bottom of my foot. I still research the disease, but I’m not consumed with my death or demise because of it. I value each day as it comes,” she says.
But there is one thing that Darlene will always be concerned about: the necessity for more research to better treat and one day hopefully cure MPNs. “We desperately need more research, clinical trials, and drugs approved. There’s so little out there right now that’s released and available to MPN people. I’m hoping that more research and drugs come out in the next five years, other than a stem cell transplant, and I hope more people will donate funds to research,” Darlene says.
Contributed by: Jennifer Acker-Content Writer MPN Research Foundation
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.