In fact, he uses Google alerts with keywords and reads a lot from a variety of reliable sources, “so I can keep up to date on new drugs.”
That’s how Doug, now in his mid-70s, came to be on a clinical trial, with results that have altered his daily living from needing a walker to enjoying a one-mile brisk stroll.
Doug lived with his wife in Washington state when his general oncologist began addressing his primary MF with a “watch and wait” approach. When he moved to Boise, Idaho, a new community hematologist/oncologist started him on the JAK inhibitor ruxolitinib. While his enlarged spleen initially reduced in size, two years later, it was larger than ever. His platelets dropped as low as 50, and his fatigue was overwhelming. It appeared that ruxolitinib was not the answer to his MF symptoms.
It was then that he came across information about a launching clinical trial to study the effectiveness of selinexor for MF. The drug is FDA approved for some forms of myeloma and lymphoma. An oral “selective” inhibitor, it leads to tumor suppression while largely sparing normal cells.
With other serious health issues, Doug knew he was not a candidate for a stem cell transplant. He was also considerably overweight and anemic at the time, which could limit his treatment options.
He would be one of the first patients to enroll in this phase 2 trial if he qualified and would have to travel to Huntsman Cancer Institute in Salt Lake City – a five hour drive or costly airline ticket. He considered his options carefully and jumped into the review process to see if he was eligible. And he was.
Today, more than three years later, Doug explains the difference in his life.
“It has opened up my ability to be mobile. I don’t suffer from fatigue even close to what I had. That ‘I can’t take another step’ overlayed tiredness, that’s completely gone.”
He reports that his blood counts are all currently in the normal range. And while he still has fibrosis in his bone marrow, according to his most recent bone marrow biopsy, there is less evidence of fibrosis.
The once weekly medication has a few very “manageable” side effects for him.
“If appropriate treatments aren’t working, clinical trials are the only way you can get more and better help,” Doug strongly believes. So he generously shares his clinical trial experience and urges others to explore all of their options.
“I wish I had more information that could give me better knowledge of where I’ll be. I’m feeling really good – too good to believe I’m at the end,” he says with raised brows. “I’m out there on the leading edge, paving the path.”
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.