Myelofibrosis (MF)


    “A focus on the present day is very important, don’t project too far out. It also helps to be thinking about and caring for others. Otherwise, if we focus on ourselves it will create problems; it will wear you down.”

    Dave Denny

    PMF Patient Jackson, Ohio
    A Pastor and Patient

    If you ever have the chance to have a conversation with Dave Denny, PMF patient of Jackson, Ohio, you should, because talking with Dave is like a chat with an old friend on a meandering back road, a road with twists and turns and laughs.

    When we first spoke, Dave casually mentioned installing a sink the other day and apologized for pushing back our call back; he was taking a detour to try and get home more quickly, but it didn’t work out. His life, some may speculate, took a detour when he was diagnosed with PMF in 2013, but Dave, a Baptist Pastor of thirty years, doesn’t see it that way.

    “When I was diagnosed, I had to say, well, here’s my turn; here’s my chance to live out my theology. I believe my life is in God’s hands. God is good and wise and he knows what he’s doing. I’ve been a pastor for 30 some years, and one of the things I do as a pastor is talking to the sick and dying. I’ve spoken to many people who are diagnosed with terminal cancer, and my approach is the Bible is God’s word. It is the truth about where we came from, why we’re here, where we’re going, and how we should live.” Dave’s voice is confident and, at the same time, calming when he speaks about his faith.

    His faith and relationship with God have a grounding effect on his battles with Myelofibrosis. “God doesn’t promise me I’m going to live tomorrow, so my theme in MF is we only get one day at a time; get all the joy you can get out of today. I think I do a better job of squeezing the joy out of each day since I’ve been diagnosed. I’m not going to ignore opportunities for joy today,” he says. And some of Dave’s favorite joys are his 14, 12, 4 and 2- year- old grandchildren who he enjoys “spoiling terribly.”

    Early on in his diagnosis, Dave decided to get connected and involved in whatever way he could with the MPN community. Today he helps lead an online MF support group with thousands of members and from there connected with local MPN patients in his area. Dave was also the recipient of the 2015 Cure Magazine MPN heroes award.

    Dave’s advice to other patients: “A focus on the present day is very important, don’t project too far out. It also helps to be thinking about and caring for others. Otherwise, if we focus on ourselves, it will create problems; it will wear you down.”

    I had in my notes to learn about Dave’s symptoms, and how he’s managing his diagnosis and new drug therapy Inrebic, but our conversation took a lighter turn. Dave tells me the drug has a strange name. “You sound like a frog when you say it: ‘Inribic, Inribic, Inribic.’” We both laugh. His approach to life seems to be a mix of serenity, faith, humility and plenty of humor. Although he jokes his wife, Lola of forty-one years may think differently of his humor.

    By now, most in the MPN world heard of Inrebic, but it’s not usually where an MPN patient begins treatment. Dave says, “My first therapy was no therapy at all. I did try dark chocolate because I really like dark chocolate. It didn’t do anything for my PMF, but it made me feel better” he says. We were laughing again, but I wonder if he’s onto something.

    When we get back to the questions, Dave tells me he had a successful run with Jakafi for close to five years. “I wasn’t going to take it (Jakafi) at first because I thought I felt fine, but I remember my Doctor saying,’ I don’t think you know how well you can feel.’ And within a few months of being on Jakafi, my memory improved; it felt like a fog lifted, and I had more energy than I had in years.”

    Recently though, Jakafi’s effectiveness diminished for Dave (his white count was spiking, and his spleen was getting bigger.) He considered a few trials but decided to wait until this past September when Inrebic was approved by the FDA. Dave’s been taking it close to four months under the care of an MPN specialist at the Cleveland Clinic and his local hematologist and reports he feels better: his counts are stabilizing, and his spleen is shrinking. And despite mild nausea and upset stomach caused by his therapy, he plans to stay the course.

    Today Dave is happy with the results he’s experienced while on Inrebic, but after we hung up, I couldn’t help but think there was something else that was working well for this Midwestern Pastor. I circled three words from my notes: faith, humor, grandchildren. Maybe this is the kind of combination therapy more MPN patients should be talking about.

    Contributed by Jennifer Acker

    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.

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