ROBERT

ET to AML to Transplant: “I worked every day”   

Robert Greenbaum married his high school sweetheart in 1990 after graduating from Cornell University. He had no idea she would be his unfaltering rock through the high peaks and low valleys of a difficult journey from essential thrombocythemia (ET) to acute myeloid leukemia (AML), and finally a successful stem cell transplant.  

Diagnosed with ET at age 44, Robert was constantly looking for answers. It was 2012 and there wasn’t much to be found. His high platelet counts were indicative of ET, but the reason behind his sustained elevated white blood counts was unclear. “We’ll watch and wait,” his hematologist told him, along with instructions to take an aspirin a day and stay off the internet. “He knew me. I would go online and do searches which would make me go crazy because you read all this stuff you don’t understand, but it all sounds very ominous.” 

Robert is now a member of MPN Research Foundation’s Patient Impact Council and shares his personal story and his commitment to help other patients.  

He remembers feeling his whole life flash in front of him when he was first told he had ET. He thought: “What happens if it progresses to something else?” But he got into a comfortable routine when his blood counts stayed steady, first weekly, then monthly and bimonthly, and eventually every six months. “Basically, I would just try to live my life. And I worked . . . and as it got spaced apart, things seemed pretty good.”  

While his doctor told him the risk of disease progression goes up over the years, Robert wasn’t concerned about his risk factors. He was healthy and in good physical shape other than his myeloproliferative neoplasm (MPN).  When a 2016 genetic test confirmed he had the CALR mutation, that helped him feel even less anxious. By then he was aware that ET patients with CALR have a better prognosis than those with a JAK2 mutation. 

After his youngest of two sons graduated high school, he and his wife relocated to Raleigh, North Carolina. The move came at the beginning of the COVID-19 pandemic, driven by his 30-year career with the same mortgage company, where he continues his tenure as chief marketing officer. With COVID restrictions in full swing, it took him several months to get an in-person appointment with a new primary care physician. The results from Robert’s “routine” blood tests compelled him to visit a hematologist/oncologist office, where a bone marrow biopsy confirmed an extremely high white blood count. 

Robert was prescribed ruxolitinib, which brought his counts down considerably. “I thought that was great,” says Robert. But the result was temporary. “She finally referred me to the Duke Cancer Center and then to Johns Hopkins.. 

“All the cancer patients were in different states and ages and conditions,” he remembers. “And it’s like, oh, my goodness, is that going to be me?” His concerns quickly became more real. 

 Robert’s blasts increased significantly over just a few weeks, as his body transitioned to AML. Blasts, sometimes called leukemic cells, are immature white blood cells that develop uncontrollably in the bone marrow. High levels of blasts in the circulating blood and bone marrow are a diagnostic indicator of leukemia.   

When the doctor delivered the news to Robert and his wife, the words hit like a freight train: “It’s AML.” The gravity of the life-threatening situation felt surreal. Grasping at hope, Robert quietly asked: “How long do I have, six months?” The doctor’s response was even more devastating: “Not even.” 

Robert says he’ll never forget those words.

“I completely broke down,” he remembers. “It wasn’t so much about my life. But it was my wife and my kids. I was worried about my family.” 

The bone marrow transplant team at Duke Cancer Center in Durham gave Robert and his family every reason to feel hopeful. Based on his age and overall health, he was told he had an excellent chance of spending many more years with his beloved family. In August 2021, Robert gratefully and anxiously watched as stem cells from a 25-year-old male were infused into his arm. “He definitely saved my life,” says Robert.  

Throughout the treatment and transplant process, Robert worked every weekday, whether from his hospital bed or the hospital-adjacent apartment they called home for a full month before and 45 days after the transplant. “It was the pandemic and everyone was working from home, so me working from the hospital, I didn’t even stand out.”   

Today, Robert is feeling well, deeply thankful for the support of his family, friends, and colleagues. He is eager to give back to the MPN community. Reflecting on his journey, Robert shares that although he was initially skeptical, he gained valuable insights from a life coach. Her advice resonated with him: ‘Focus on what you can control. Take it one day at a time. Live for today. You need to plan for the future, but don’t let it consume you.’ Now, he wants to pass on these words of wisdom to help others navigate their own challenges.   

“From a support standpoint, don’t be afraid to ask for help,” Robert wants to share with people living with an MPN and their caregivers. “Whether it’s your significant other, your spouse, your caregiver, your doctor or nurses. Sometimes you have days where you just break down and cry, but it’s okay.” 

As a member of the Patient Impact Council, Robert relishes his insider’s view into research that brings hope to those affected by MPNs.  He is deeply passionate about leveraging his marketing communications expertise to advance the MPN Research Foundation’s mission. He is eager to contribute, creating impactful educational materials and developing vital support resources for patients and caregivers.