2008.08.31 – Residents near cancer cluster find validation
Residents near cancer cluster find validation
BY KENT JACKSON
Published: Sunday, August 31, 2008 4:13 AM EDT
Their energy lags.
Every few weeks, they go to the doctor to have blood drawn, a treatment that one of them said reminds him of George Washington’s days.
But now patients with the blood cancer polycythemia vera know there is a connection between them.
On Monday, a federal agency released a final report on a two-year study that found a high incidence of polycythemia vera, or PV, in the tri-county area around Hazleton.
The report by the Agency for Toxic Substances and Disease Registry looked at Schuylkill, Carbon and Luzerne counties, confirmed the diagnosis of PV in 33 people and found PV rates in some zip codes exceeded the overall county rates by four times.
Merle Wertman, a Tamaqua resident diagnosed with PV in 2003, said he used to get the feeling that government officials didn’t believe him when he went to meetings to discuss the area’s high incidence of the cancer.
“They thought we were insane. Finally at the meeting on Monday night, they come up with we do have a problem. What are they going to do about it? I have no idea,” Wertman said.
Betty Kester, who raised an alarm after she and her husband, Lester, who is deceased, were diagnosed with PV, said she was determined to attend Monday’s meeting.
“I said ‘I started this, and I’m going to finish it.’ I was sick, but I went,” Kester said when telephoned Thursday at her room at Hazleton General Hospital.
Her foot started bleeding — “Something exploded,” she said — at night after the
meeting, and required her to go to the hospital.
About four years ago after the Kesters and one other neighbor on Ben Titus Road in Rush Township were diagnosed with PV and a fourth neighbor showed signs of the disease, she campaigned to have water tested.
She and others realized that the local outbreaks of PV defied the odds.
Examinations of cancer registries shows PV normally affects 1 in 100,000 people.
“Why do we have 33 cases around here, or more?” Wertman, who lives on Washington Street in Tamaqua, said. “Yes, I do think there is something environmental.”
He wants to find out whether chemicals dumped at the McAdoo Associates site, chemical plants or power plants somehow trigger the disease, whose cause still mystifies doctors.
Dr. Vincent Seaman, a research toxicologist for the federal agency, said future studies might compare people in the area who don’t have PV with those who do to try to ascertain risk factors for the disease.
Outside the Hazleton area, studies could look at other places associated with power plants or Superfund sites to determine if those play a role in PV.
Genetic studies of patients and healthy populations might uncover whether anything unique is happening in the group with PV.
The agency also has blood samples that can be examined for biomarkers that would indicate what patients had been exposed to, Seaman said.
Wertman said he wants answers for the generations that follow him.
“I’m doing this for my grandchildren. I’ve got five in this area, and I want to find out what’s going on,” he said.
For him, living with the disease means taking trips every two weeks to have phlebotomy treatments or blood withdrawals.
PV causes the red blood cells to proliferate and the blood to thicken, so withdrawing blood helps restore red cells to normal levels.
Phlebotomy treatments last at least two hours for Wertman, and he hasn’t gone longer than six weeks between treatments.
“At six weeks, my hemoglobin is sky high,” he said. “My retirement sucks because I’m tired all the time. I’m not enjoying it.”
Kester said she, too, feels fatigued.
“I’m very susceptible to any disease,” she added.
Dr. Paul Roda, a Hazleton oncologist who treats patients with PV, said local doctors have become skilled at spotting the disease and sending patients for the JAK II blood test that can diagnose PV.
“I think the earlier we recognize the disease, then we can start treating when appropriate,” Roda said.
In addition to phlebotomy treatment, some patients take medicines such as hydroxyurea, which poses a slight risk of causing leukemia.
PV generally strikes older adults so it’s difficult to attribute their symptoms to the cancer or their age, Roda said.
“Was the heart attack due to PV or that they are 70 and had all these diseases? I say the answer is both, but you see how it makes life difficult,” Roda said.
Jim Kersey, a 65-year-old resident of Portland, Ore., noticed publicity that the Pennsylvania cases received because he, too, has PV.
“You do have a normal life, except for the inconvenience of draining blood,” a treatment that he said made him recall George Washington, who underwent bloodletting — a common treatment in his day — during his final illness.
“My eyes get bloodshot,” Kersey said. “My face gets very ruddy. My blood gets so thick.”
Kersey devised his own treatment after reading research about PV.
He figured he wouldn’t need to overproduce red cells if his cells became more adept at releasing oxygen, something that happens in the presence of carbon dioxide.
So he started exhaling more slowly to retain carbon dioxide longer.
As a result, his red cell count dropped and he has waited up to 13 weeks between phlebotomy treatments. His pulse and blood pressure also have dropped.
Kersey practices the slow exhales on walks while he also breathes in through his nose with his mouth closed to control the pH and temperature of his blood. He breathes deeply to exercise his diaphragm and open the bottom of his lungs to promote oxygen exchange. But he said his method can strain the kidneys and deprive the brain of oxygen.
“Not exactly a safe thing to do,” Kersey said.
He doesn’t recommend that anyone try his technique without medical supervision.
Kersey would like researchers to study the treatment, which so far he has done alone, he said, using an analogy familiar to northeastern Pennsylvanians.
“I’ve been a canary in the mine.”