Myelofibrosis (MF)
    “I have lived beyond my expectations, longer than my father and both grandmothers. I think I am obligated to make the most of this blessing.”

    Dr. Margouleff , an MPN patient for nearly three decades, practiced medicine at North Shore University Hospital in Nassau County on Long Island where, for almost 40 years, he was an attending physician in the Department of Medicine and is board certified in Internal and Nuclear Medicine.

    “I have lived beyond my expectations, longer than my father and both grandmothers. I think I am obligated to make the most of this blessing.”

    What kind of insight does a doctor who has treated cancer patients, and himself has a rare cancer diagnosis have to offer fellow MPN patients?  Over the course of his career, Dr. Margouleff treated hundreds of patients with thyroid cancer. On working with cancer patients, he states,  “I think to live a fulfilling life, patients need hope and I think it is my obligation to present treatment in that way.”  Dr. Margouleff learned early on in his career as a Medical Doctor, “One should never tell a patient how long he or she has to live. None of us know that and quoting the literature on this topic has brought great distress to many patients. I tell patients that they have a disease and that they will be treated with the best available medication. I tell them that in my life I have seen a long list of medical advances, for example coronary artery bypasses, and all the vaccines that have eliminated polio and numerous other childhood diseases.”

    Dr. Margouleff has witnessed the treatment of MPNS change throughout the course of his lifetime. He recalls, “I have seen the use of radioactive phosphorus discontinued. It was amazing, one dose or two at most by IV dropped the hemoglobin to within normal. There were no side effects and it was used at most centers. Then there was data that indicated that its use increased the risk of leukemia. I remember making a house call to an elderly gentleman who had skipped his phlebotomies and had a stroke. He was housebound. I had a little lead lined box and went to his home and gave him a dose of P-32.”

    But as those who’ve ever faced a challenging diagnosis know all too well, life can change in the blink of an eye, and Dr. Margouleff was suddenly looking at life through the foggy lens of a patient when he was confronted with the rare diagnosis of Polycythemia Vera some thirty years ago. Dr. Margouleff acknowledges he was fortunate to have a mild form of the disease.  And on accepting the diagnosis he says,  “Since I had treated a number of patients with PV with phosphorus P-32, I was quite familiar with the disease and, in fact, performed a blood volume measurement on myself in my own laboratory.”

    However,  just a little over a year ago, Dr. Margouleff became anemic. His hematologist, Dr. Steven Allen, confirmed a new diagnosis of Myelofibrosis. Dr. Margouleff confesses, “I often felt well enough that I didn’t see him for years at a time; he was not happy with me as a patient.”

    When pressed about what he predicts changing with the treatment of MPNS he notes, “Over the years I treated hundreds of patients with hyperthyroidism with radioactive iodine I-131. In this condition there is the unrestrained overproduction of thyroid hormone. It is similar to the uncontrolled overproduction of red cells in PV. That disease is due to autoimmunity, an antibody takes over control and stimulates the cells that produce thyroid hormone. I think we will see new drugs that can control whatever factor is overstimulating red cell production. It is coming.”

    When asked what wisdom he would impart with the MPN community the doctor’s orders are clear, “My advice to others with an MPN is to be diligent in following doctor’s orders. If you are polycythemic and require phlebotomies, get them as medically indicated. Untreated, there is a real risk of stroke or other cardiovascular event. It is a painless disease and failure to adhere to necessary treatments can be catastrophic. Finally, remain hopeful. There are significant  research developments that could conceivably reverse the course of this spectrum of diseases.”

    At 88 years young, Dr. Margouleff still keeps busy. He practiced medicine full time until the age of 76, and then began practicing part- time until the age of 83 when his wife became ill. “I loved being a doctor and still keep up on medical advances. I am the associate editor of a medical journal and review articles reporting on advances in medical knowledge.”  He’s not all business though. Dr. Margouleff  has been playing the piano since age six; a skill that proved useful during his medical schooling. Dr. Margouleff shares, “While in medical school I supported myself by playing in bars, restaurants, and ski resorts. I studied in Switzerland and you didn’t have to be good to get gigs in the 1950s. All the musicians were killed in the war and I had plenty of work.”  He also has a love of the outdoors and has kept a fishing boat in Montauk on Long Island since 1968, and enjoys reading The New York Times daily.

    There is not much time for rest for this MPN patient. Dr. Margouleff is writing his personal memoirs and has a large extended family. He is a father to seven, grandfather to eight, and great- grandfather to three.  He acknowledges, “I have lived beyond my expectations, longer than my father and both grandmothers. I think I am obligated to make the most of this blessing.”

    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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