Pilots for Christ to help transport young man to Arkansas clinic

Jeffery West, 23, a firefighter with the Helwestern Volunteer Fire Department, suffers from Castleman's Disease, a rare disease that afflicts only approximately 200 people in the United States.

Castleman's is characterized by a single, solid growth within lymphatic tissue in the chest, stomach or neck, although, growths may occur in other lymphatic tissue throughout the body. West has the "plasma cell type" of the disease which affects young males.

Dr. Benjamin Castleman discovered the disease in Boston in 1956.

The disease was first diagnosed in May when Dr. Robert Cerofilo in Birmingham performed a lymph node biopsy.

West had previously suffered fatigue, weight loss, dizziness and anemia during a six-month period. "He lost right at 156 pounds," said his mother, Betsy West, director of the Grove Hill Public Library.

They began their search for what was wrong with Dr. Gary Kania, a stomach doctor in Thomasville. "Jeffrey was having trouble holding his food," she said. "We thought he had a stomach problem, possibly an ulcer. Dr. Kania exhausted all means. He knew something was wrong because Jeffery's Creatinine level was high, and Jeffery was severely anemic."

Kania referred the Wests to a Dr. Thaddeus Beeker, a hemotologist/oncologist in Mobile. "He did a lot of blood work," she said. "He did a bone marrow biopsy." After several different tests, Beeker couldn't pinpoint anything.

Going back to Dr. Kania and with Jeffery developing a slight cough, "we thought it was just a sinus infection," she said. Kania ordered a chest X-ray, and "that was when we found the tumors."

"I was trying to go on with day-today life," Jeffery said, "knowing that something was wrong with you but you couldn't find what was wrong. You had been run through the mill several times - test-after-test-after-test.

…It even got to the point where we were taking tests again."

After the chest X-ray, they were referred to Dr. Cerofilo. A CT (computed tomography) scan of Jeffery's chest showed where the lymph nodes had swollen. Cerofilo wanted to do a biopsy. "At first they thought it was lymphoma," Jeffery said. However, after the biopsy results, Castleman's Disease was determined.

Cerofilo conferred with Dr. Frits Van Rhee, a specialist at the University of Arkansas for Medical Sciences in Little Rock. Jeffery met with Van Rhee, who had treated six to seven cases just this year.

After several screenings, it was confirmed that West had swollen lymph nodes behind his lungs. "Your lymph nodes filter your red blood cells," Jeffrey said. "When they are swollen, it throws your red blood cells out of whack."

Jeffery will be treated in clinical trials with a new drug, "a Chimeric Antibody," which is said to be similar to small proteins made by the body that are important for fighting infections.

The Chimeric Antibody was developed in a laboratory using both human and mouse cells. The antibody will block a small protein called Interleukin (IL-6), which is made naturally by the body and at normal levels is important for inflammation reactions. The IL-6 is not being filtered like it is supposed to be, Jeffery said, and it messes with sugars in the body.

Jeffery's treatments, which he hopes will begin July 16, will be every other week in Arkansas. There will be six treatments, every other two weeks.

The week will involve blood tests the day before two-hour intravenous treatment, his mother said. He will be monitored

for six hours for any problems the third day, and more blood work will be done to see how Jeffery is interacting with the drug.

Jeffery is very confident that Van Rhee's treatments will work. "I feel very confident in him (Van Rhee) ….He wasn't up-at-arms about this. He is a specialist at it. He took it very calmly, which calmed me down.

This can be a very, very dangerous disease if not properly treated.

…He has had great results. The disease will be in remission….I can go on and lead a normal life," Jeffery said. "If I let it go and not seek treatment, it could possibly turn into lymphoma, which is a cancerous disease, (or possibly myeloma)."

The treatments in Arkansas will not kill the disease. "I will always have it," Jeffery said. "I will always carry it, but I can't pass it on to anyone." The disease will be simply inactive, he said.

Jeffery will travel to Arkansas for his treatment free through the Pilots for Christ program branch in Monroeville. "It's a blessing," Jeffrey said of the Pilots program's offer to help him. "It includes men who have their pilot licenses and have their own planes," his mother said. "They do it free of charge."

If the six-week treatment period is not as successful, as Jeffery hopes, there will be an additional three-week straight period of treatment. The only possible side effects to the drug are allergic reactions and a possible rash, he said. That will be treated through an allergy medicine such as Benadryl.

"We're just hoping for the best with this drug," Betsy West said. "…There are other options if this does not work."

Jeffery would love to get back to work at the West Frasier sawmill in Citronelle by mid- August. "I can go and do what I want," he said, "but maybe a month and a half ago I would tire out real easy….Within 30 minutes, I would have to stop."

Along with the upcoming treatments of the Chimeric Antibody, Jeffery will receive B-12 shots, which he expects to bring his energy levels back up.

There was actually a boost of energy in Jeffery after the lymph node biopsy. They took a large piece out to study, his mother said.

source:www.checkbiotech.org