An early Christmas
A little more than three years ago, Howard Lewis – retired IBM executive and active North Carolina business consultant – backed into the murky MPN world. He felt an abdominal swelling, feared a tumor and went in for a physical exam. He ended the day with a diagnosis of chronic Myeloid leukemia…later corrected to polycythemia vera/
After suffering fatigue, splenomegaly, disturbed sleep, weight loss and all the rest, he was able to move over to Jakafi after last year’s FDA approval of that JAK inhibitor. It worked for a time but drove his platelets so low he was soon back at his doctor’s office to explore alternatives. A momelotimib trial was one possibility except by then his platelets were below protocol levels. That’s when his wife Sharon following up discussions on the Myelofibrosis Support Facebook group happened on pacritinib. With a little digging into www.clinicaltrials.gov she came up with the trial description and trial sites. They contacted the investigator at the D.C. center and were enrolled in the study
Problem was Howard pulled the short straw and was consigned to the Best Available Therapy (BAT) arm of the trial. If his spleen increased by 25% during the trial he could cross over to the pacritinib side …otherwise he would have to wait 24 weeks. Meantime his BAT drug, low dose Jakafi, helped maintain his counts while his spleen swelled.
December 21, an early Christmas. That was the day he crossed over to pacritinib and almost instantly improved. By week four his spleen had measurably reduced, platelets increased, he had gained weight andwas feeling much better.
”It was unbelievable,” he recalled. I felt better every day. “In terms of the electronic diary patients on trial keep, on a scale of 10 I went from a miserable 9 down to a reasonable 4 when the trial suddenly halted.” The date was February 4. After waiting six month to get on pacritinib Howard got to enjoy the benefits of the drug for only a few weeks before the FDA yanked it to review data.
Looking at his options now that his spleen is once again swelling and his symptoms have returned, he and Sharon are looking at a possible stem cell transplant or a new trial. “Because we were doing so well, our doctor said he would apply for an exception,” he said.