AJ Halavacs of Fort Lauderdale, FL died unexpectedly earlier this month. Since learning of his death a few days ago, I have been shaken to my core.
AJ was among the patient guest speakers at a CLL Town Hall meeting at Moffitt, sponsored by Patient Power. The educational symposium featured two CLL specialists and was attended by more than 150 CLL patients and their families and friends.
He was a tall, strapping, handsome man with a ruddy complexion and a radiant smile. He never stopped smiling. You wouldn’t have known that AJ had suffered from CLL for many years. And that four months earlier, he’d been confined to a wheelchair, weak, with an ugly rash covering his body.
None of the treatments AJ had endured, much of it chemotherapy, worked for very long or very well. Until ibrutinib. The now FDA-approved treatment, trade name Imbruvica, is considered a breakthrough immunotherapy to treat CLL. It targets the malignant cancer B-cells but leaves the healthy T-cells of the immune system in tact. Best of all, it’s an oral medication. Three capsules a day. No chemo.
Days after AJ began to take ibrutinib in a clinical trial, he was out of that wheel chair. The rash disappeared. He quickly regained his strength. He traveled to Amsterdam and North Carolina for business. He expressed great joy in his longtime marriage to Jane, who had accompanied him to the town meeting, and unbridled pride in their three grown sons, one of whom is engaged to be married. Because of his seemingly miraculous response to ibrutinib, AJ and Jane were looking forward to the rest of their lives.
Something happened, however, after April 12. Apparently years of CLL and treatments had taken too harsh a toll. AJ developed Richter’s transformation, a CLL patient’s worst medical nightmare. AJ Halavacs died at Moffitt Cancer Center on June 3.
We CLLers think of these treatment advances as a bridge. Cross a bridge with a particular treatment to make it to the next bridge. Our goal is to cross enough bridges so that we can live with our CLL and die from something else. AJ reminds us that there is no cure yet for this disease. Patients remain hopeful, but after AJ’s death, this patient feels more vulnerable and less sure-footed about the path forward.
Nonetheless, I am glad that I met AJ Halavacs and learned about him. Mostly I am honored to have circled his spirited, positive orbit for a few hours. He’d be the first to tell CLLers not to waste a minute fretting, “live large” and say ‘yes’ to every opportunity for the time we’ve been given.