Myelofibrosis (MF)
    MPNRF Patient Impact Council

    Ignacio had been experiencing painful symptoms for two years. His blood counts were anything but normal. Yet, every doctor he went to, whether in an emergency or urgent care setting or a referral physician’s office, he was told there is either nothing wrong or he was misdiagnosed.  

    He remembers the intense frustration well. “I kept asking them over and over. Why is it that my blood tests are coming out so wrong? My white blood cells are insane. And they kept saying, ‘Oh, it could be just any kind of infection. But don’t worry about it,’ and they sent me home.” 

     His own research told him otherwise. He knew something was very wrong. So he decided to go to a specialist “to see if I’m crazy.” Ignacio and his wife went to the Cleveland Clinic to see a cardiologist. He looked at his blood tests for the last 3 years and heard of his numb lips and tingling fingers, dizziness and horrific pain in his then totally purple toes. And his shortness of breath. “I felt like I couldn’t breathe,” he says. 

     “It took him 5 minutes. He told me: ‘Let me call somebody upstairs,’ and they sent me from there to the oncology department.”  He ended up at MD Anderson Cancer Center, where a bone marrow biopsy confirmed his diagnosis of myelofibrosis, with five different mutations. 

     Ignacio was born in Argentina, moved to Spain as a child, then built two global companies in the hospitality industry, which have taken him to live in Columbia, Brazil, Mexico and now the United States, where he is raising two children, now in their teens. 

     He is a very successful, well-educated man, worldly in life and business, and still, he found it difficult to understand what some of the specialists were telling him, including why he should rush into a stem cell transplant when he had no good donor matches. 

     On his own, he put together a team of MPN specialists “to see what they could do together,” some close to home, others too far away to travel regularly. He is a 50-year-old man with high-risk myelofibrosis. They fully expect him to have a stem cell transplant at some point. But Ignacio, who doesn’t have a good donor match (yet), believes along with his team of MPN experts, that he has time to explore other options. And by then, when there is no choice, perhaps there will be better options. 

     “Patients like me, with myelofibrosis, with the mutations that I have, we want to expand time to the transplant ….” So, he is now on pegylated interferon to hopefully reduce the fibrosis in his bone marrow, combined with Jakafi to help control his symptoms. 

     More than a year after his diagnosis, Ignacio describes how he tries to keep moving forward, pushing past the tough days. “I am only 50 years old with two children. It was really hard, I mean, very hard. First, frustration, anger. You go through all of those levels like you do when you lose someone.” 

     Today he is dedicated to doing everything possible to make the MPN journey easier for others, through his participation in MPNRF’s Patient Impact Council, Gift of Life Foundation, and support groups through Leukemia and Lymphoma Society. 

    He wants to help patients become strong advocates for themselves. He wants to help educate other doctors about MPNs and about how to speak to patients in a more understandable way, even well-read, informed people like himself. And he is excited to bring the patient voice to the future of MPN research. 

    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 MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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