CANCER GUIDE CONSULTATIONS
- CASE HISTORIES
Linda Myers

Diagnosed in June 1994 with Chronic Lymphocytic Leukemia - CLL - at the age of 52. Her WBC was 40,000 and rising, and her diagnosis was confirmed by bone marrow biopsy. Her local oncologist in Ithica, NY, who diagnosed the disease, told her she would be expected to live 10 years. He recommended no treatment at that time - standard practice for the early stages of CLL. Linda had just gotten married for second time, and had four children between her and her husband. Linda wanted to continue her work as an editor, and she looked forward to completing her graduate degree in creative writing, and to moving into a new house with her husband. Linda was deeply distressed to learn that her lifespan would be cut short by this disease; she had so been looking forward to life with her husband, new creative and professional pursuits, and the grandchildren she had longed for.

Over time, her WBC counts continued to climb and she began to have symptoms - enlarged lymph nodes in her neck. She tried alternative treatments - acupuncture, massage, imaging, Chinese herbs prescribed by a recognized herbalist. These resulted in no change in her medical status. By August 1997, her count had reached 95,000. Her local oncologist then recommended a course of chemotherapy. Linda was distraught because she'd read that chemotherapy was not particularly effective for CLL, and she feared terrible side effects with no significant prolongation of life. Adding to her distress, a neighbor had recently died of CLL.

She began doing research and was referred to me by her brother, who had been friends with another patient I had helped. I conducted extensive research on cutting-edge conventional therapies for CLL and looked into complementary approaches, as well. It was clear that fludarabine, a purine analogue, was emerging as the most effective chemotherapy for CLL. I knew from previous experiences and MEDLINE searches that Dr. Michael Keating of M.D. Anderson Cancer Center (MDACC) in Houston was probably the leading expert in cutting-edge approaches to CLL therapy in the U.S.; in my view, MDACC had the most advanced research and clinical applications for hematologic cancers. I contacted Dr. Keating directly to ask him about CLL treatments and Linda's case in particular.

Keating was extremely forthcoming; he confirmed that Linda was probably at the stage of her disease where treatment was required. (Patients can go untreated for many years if their CLL remains indolent.) He also explained, in detail, that a new combination chemotherapy protoco - fludarabine and the alkylator cyclophosphamide (Cytoxan) - was performing extremely well in clinical trials, due, he believed, to a synergy between these agents. He cited a number of cases in which CLL clones were completely eradicated from bone marrow, at least for an extended time frame, allowing for removal and harvesting of bone marrow cleared of CLL cells. This bone marrow could then be cryopreserved for later transplantation if the patient were to experience a recurrence, and given the use of patient's own marrow, BMT could be potentially curative, and without the need for immunuppressive drugs. I recommended that Linda make an appointment to see Dr. Keating, which would require her to travel from Ithica to Houston. During this conversation, I shared my enthusiasm for Dr. Keating, not to pressure Linda but to let her know how much hope his approach held, how impressed I was with his knowledge, communication skills, and the exceptional quality of his published work. In essence, I let her know that I believed Keating's claim that he could help her. I also let her know that I did not think that the side effects would be particularly severe, and that the newer anti-nausea medications and other forms of medical management would help make the experience tolerable. I also sent Linda a detailed report on all my findings, summarizing recent research in CLL, Keating's work, my conversation with Keating, and a host of complementary therapies she might also consider.

Linda decided to travel to MDACC to meet with Keating. She and her husband were immensely impressed with Keating and the MD Anderson staff, and she decided to go forward with the fludarabine/cytoxan regimen as part of a clinical trial. She got her local oncologist on board, and he agreed to administer the drugs and receive instructions from Keating.

Linda began her chemotherapy treatments in December 1996 and they were completed by May 1997. She did find the treatments tolerable, suffering no dose-limiting or severe side effects. By the time her treatment was finished, Linda was in complete hematologic and cytogenetic remission. Careful testing determined that her bone marrow was indeed sufficiently clean for harvesting. In September 1997 she had bone marrow aspirated and stored for future transplantation should it ever be required.

Linda continued to work, and four months after the harvesting procedure, she completed all her course work for her MFA in creative writing. She and her husband moved into a new house, where she set up an art studio in her basement. Linda has since helped a number of other CLL and other cancer patients, drawing on my report and her experiences with me. As of my last conversation with her in mid-2000, she remains healthy, happy, and in complete remission. She says that she is comforted by the knowledge that her bone marrow, still stored at MDACC, is there for her should she ever need it.

LINDA'S STATEMENT