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One of the first things he did was call The Leukemia & Lymphoma Society'sInformation Resource Center (IRC), a free call center staffed by highlytrained master's level oncology professionals equipped with the latestinformation on leukemia, lymphoma and myeloma.
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"Some of my questions were very generic and others were very specific,since my diagnosis included a condition called cytogenetic chromosome 13deletion," Walker said. "They were very helpful. They answered my questionsand referred me my local chapter where I was able to speak to other patientsand join a support group."
This fall the IRC marks its 10th anniversary. While many healthorganizations have hotlines, the IRC is unique because of the depth ofindividualized attention it offers. For patients with blood cancers, thesearch for disease-specific information has never been simple.
Blood cancers are a group of diseases, all of which originate in the bonemarrow or lymphatic tissue. But leukemia, lymphoma and myeloma are differenttypes of cancers, further complicated by sub-classifications within each type.Consequently, symptoms, prognoses and treatment protocols vary widely. IRCspecialists are trained to fully assess each individual's needs and tailortheir responses to provide the most appropriate services for that caller. Eachspecialist is not only well versed on a broad range of disease information butalso has a specialty area to provide more enhanced services.
Juanita Fruge, 51, of Kinder, LA, went searching on the Internet after shewas diagnosed with non-Hodgkin lymphoma in May. She found the Society's Website and then called the IRC.
"I was so scared and they were so supportive," she said. "They spent a lotof time with me and provided me with a lot of information and resources."
The IRC's information specialists are master's level professionals,dedicated to assisting patients in accessing the most current treatments andsupport services. The service has experienced exponential growth in the lastdecade - in 1997 the call center received 13,862 calls; last year it receivedmore than 75,000.
"We track of the number and type of inquiries we receive each month, butour specialists are more focused on quality and depth of response to patientsand caregivers needs vs. quantity," said IRC Director Anita Wellborn. "We arehere to help patients and their families through the confusing maze ofdiagnosis, treatment and survivorship."
Translations are available in more than 140 languages. The informationspecialists are regularly informed on disease developments, new treatments,clinical trials and quality of life issues that affect patients and theirfamilies.
The IRC also is engaged in a patient navigation study to offer proactivefollow up for callers who have specific challenges. Recommended actionsinclude seeking a second opinion from a blood cancer specialist or contactingtheir local chapter. In January, the IRC launched an assistance program tohelp cover insurance co-pay costs.
IRC information specialists are available at (800) 955-4572, Mondaythrough Friday, 9 a.m. to 6 p.m. ET. Clients may also email them [email protected] or chat online at www.lls.org (Click "Live Help").
About The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society(R), headquartered in White Plains, NY,with 68 chapters in the United States and Canada, is the world's largestvoluntary health organization dedicated to funding blood cancer research andproviding education and patient services. The Society's mission: Cureleukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality oflife of
