ALEX

  • ALEX

    Essential Thrombocythemia (ET)
    “When they diagnosed me with ET, I couldn’t even say what I had: essential thrombocythemia. I had no idea what an MPN was at that time. I was just in shock,” says Alex, an Australian fitness and now nutrition buff who has had ET since 2017. “It was a bit overwhelming.”

    Alex recently told MPNRF that he clearly remembers his hematologist handing him a booklet when he first spoke to him of his diagnosis, which came shortly after routine bloodwork led to a red flag for high platelets. He immediately focused on a leukemia organization logo at the top.

    “I thought, wow! And I just looked at him… is this cancer? And his words: yeah, it is, but it’s the best kind of cancer.” Alex thought about if there is such a thing as a ‘good’ cancer. Then he asked if there was anything he could do about it. He wasn’t prescribed any medications, and today is still only on aspirin for anticoagulation (blood thinners). He was simply told to “try and be as healthy as you can.”

    He has taken that advice to heart every day since. Alex describes himself as “not really impacted by this disease.” As a soccer (football) player, he had noticed his shins were always bruised, and that they didn’t heal as well as his teammates. “My fingers and toes would have that purple discoloration,” and he had minor episodes of gout. Today, he also suffers from brain fog, tiredness, and affected eyesight.

    Coupling the research he did about ET with two intense bouts of gout, he decided to actively adjust his lifestyle. “I really started to work on the health and fitness thing because I could,” he says, “which in the long run, it’s helped my health.”

    Alex reports that his platelet counts have been at a reduced level for a few years now. “I got involved in this routine for the two or three months that we were locked down during the pandemic. And at the back end of that, just as Covid finished, I went to do my blood tests…”

    “What’s happened?” That was his doctor’s opening comment when he called with the lab results “And I’m thinking the worst. He said, ‘your platelet levels have dropped, like 150,000 in three months.’ The only thing I could think of was I was less stressed… And I was substituting some of the stuff I was eating with some of the stuff my partner was eating, primarily around vegetables, raw vegetables.”

    Alex is confident that changing his lifestyle, including daily workouts and eating differently, more in line with the Mediterranean diet, has kept him healthy and able to enjoy living an active life. His doctor has embraced Alex’s progress. His previous three-month interval medical
    visits are for now just twice a year.

    With a large following as a middle-aged exercise and healthy eating role model, Alex shares his tips with others who are newly diagnosed or in early treatment for ET, or any other MPN.

    #1 Make a follow-up appointment soon after your initial diagnosis
    to throw your 1,000 questions at your physician – all of the
    questions you thought of after you went home and researched
    on the internet.

    #2 Explore the idea that clinical trials could be your best option
    for new drug therapies. Though Alex was never told about
    clinical trials, he knows about them now and recognizes that
    a diverse pool of participants is needed to lead to better
    treatments. He is currently looking at any appropriate studies
    he might participate in.

    #3 There is always going to be uncertainty in life, and you can’t
    control that.

    “I’m not really worried about the uncertainty anymore,” says Alex. “I’ll deal with it when it happens. So I can only do the best, do what’s working for me now and get on with life. That’s my view.” For more information about nutrition and MPNs, specifically the Mediterranean diet, you can go to www.youtube.com.

    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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