“You need to be aware of the cutting-edge science and what’s going on.”
This is the third installment of the Cancer History Project’s series in honor of Cancer Survivors Month.
The interviews are conducted by Deborah Doroshow, assistant professor of medicine, hematology, and medical oncology at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai, who is also a historian of medicine and a guest editor of the Cancer History Project in June.
Last week’s oral history with Beth Carner, a stage 4 colon cancer patient who is cancer-free after receiving treatment with Keytruda on a clinical trial, is available here.
Soon after Dave Boule was diagnosed with polycythemia vera in 2006, he had a hunch that there were better treatment options out there.
“Not too long into my course of treatment with phlebotomy only, my platelets started to rise along with my red count, which is not unusual with the disease, and the doctor wanted to treat me with the anagrelide,” he said to Doroshow.
Boule did his research.
He had found studies by Richard T. Silver, professor of medicine at Weill Cornell Medical College, who is now director emeritus of the Richard T. Silver MD Myeloproliferative Neoplasms Center, and Jerry Le Pow Spivak, professor emeritus of medicine at Johns Hopkins University School of Medicine and director of the Center for the Chronic Myeloproliferative Disorders.
Boule consulted with Silver frequently about the best treatment.
“[Silver] suggested treatment with interferon, which was something he pioneered as a treatment for polycythemia vera many years before,” said Boule, who is retired as a managing partner of the New York and global tax practices at Ernst & Young. “At this point, he’s probably been using it for 30 years.”
In a study of Besremi (ropeginterferon alfa-2b), the interferon that Boule is on now, patients fared better over the long term than if they were treated with phlebotomy alone or hydroxyurea.
“The interferon curve is pretty much flat on the normal life expectancy curve for 20 years or so, even maybe a little longer than that, before it starts to decline, and end up with a little gap with polycythemia vera being a little less good than the normal lifespan,” he said. “But it is wildly better than hydroxyurea and phlebotomy only in the trials that were done in Europe, as opposed to U.S., for this new interferon that just got approved, called Besremi.”
Boule’s hematologist in New York City disagreed with Silver’s approach.
“He said, ‘Oh, I would never use that. It’s toxic.’ And I said, ‘What does that mean?’ He said, ‘Oh, you would just feel terrible when you take it.’ And at that point I had done enough reading to draw my own conclusion that interferon was really the medicine I wanted to be on,” Boule said.
Thus, Boule became a regular patient of Silver’s.
In the early years, Boule’s doctors would write four or five letters to his insurance company so that his treatments were covered.
“It was a struggle to get the approval year after year after year until finally it broke free,” he said. “I think it was a combination of more and more people applying for it—and it became more common as a treatment. The insurance companies had less ability to deny it, because it was having good effect and it could be demonstrated clinically.”
When Silver first started treating patients with interferon, he used the same dose that people used for other cancers—which was fairly high.
“It was a fairly high dose and it did knock people out and a lot of people discontinued it,” Boule said. “And over a period of time, he developed an approach to starting with a very low dose. And so, you didn’t really have any terribly adverse effects with a very low dose. And then, he would build it up very slowly so he’d become more tolerant of it.”
Boule never had an issue with the medication until he went up to a dose of 210.
“I tried that for about two weeks and said, ‘No, I don’t think I’m going to do 210 anymore,’” he said. He had “all the symptoms that you don’t want to get—the feeling tired and achy and flu-like symptoms.”
Around 10 years ago, Boule began experiencing peripheral neuropathy in his feet.
“It was getting worse, and the thought is that potentially it’s a side effect of interferon,” he said.
For the first time since he started the drug, Boule and his doctors made the call for him to try something else—busulfan, a chemotherapeutic drug. However, a second opinion from a neurologist suggested that the neuropathy was not the result of interferon.
Boule agreed—his neuropathy had worsened while he was off interferon.
“I am just going back on interferon with Besremi about three months ago, and we are trying to regulate the blood counts, but we’re complicated by this stint I did on busulfan—because it too has a cumulative effect,” Boule said. And we were [at] a very low dose and we started to increasing the dose slowly, and it really wasn’t controlling the blood counts.”
Boule and his doctors are still trying to modulate the amount of interferon he takes. The brand name, Besremi, was approved by FDA in November 2021.
“Prior to going off interferon, my blood counts were rock solid, stable at acceptable levels for years. And this was at a very low dose,” he said.
With Boule’s knowledge of the science and as a member of two boards of non-profits related to myeloproliferative neoplasms, a category in which polycythemia vera is included, he has advice for newly diagnosed patients with MPNs.
“I make the strong recommendation that they consult with, if not see exclusively, a doctor who specializes entirely in MPNs,” he said. “[For] a difficult-to-understand disease, you need to be aware of the cutting-edge science and what’s going on.”
This column features the latest posts to the Cancer History Project by our growing list of contributors.
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