Bay Area Reporter - September 15, 2005
Kevin Davis

The Leukemia & Lymphoma Society-sponsored group, which is free, will help patients cope with the anxiety of waiting to be diagnosed, deal with a new cancer diagnosis, share treatment and medication experience, and provide support around physical illness symptoms like fatigue, night sweats, and treatment side effects such as nausea, appetite loss, and chemotherapy discomforts.

Lymphoma, a cancer of the lymphatic system, is prevalent in people living with AIDS. The lymphatic system filters out and defends the body from bacteria.

The University of California, San Francisco currently has a non HIV-specific monthly adult blood cancer support group but a need for confidentiality is one reason for an AIDS-related lymphoma group, which is not limited to the gay community. HIV-positive patients sometimes write cancer instead of HIV on compensation disability forms for fear of potential repercussions, and do not necessarily want to be out about their status.

"I see a lot of not wanting to share HIV status," said Nancy Levy, 52, a UCSF clinical social worker in hematology, oncology, and bone marrow transplants, and the support group's co-facilitator.

Knowledgeable long-term HIV survivors are more emotionally mature about complications than those without immune system concerns.

"My experience is that patients who have been living with HIV are extremely courageous, coping with chronic illness for a long time," said Levy, a 13-year UCSF employee who was motivated to participate in the new support group by her experience working one-on-one with patients who expressed a desire to talk to other patients with a similar diagnosis.

"They are more open and receptive, to discussing their illnesses, treatment, their fears," she said.

"Being HIV-positive, you always have to deal with that mentally, so you're more prepared, when something else comes along, than someone not dealing with health issues," said William, a patient who asked that his last name not be used.

After experiencing drenching night sweats with low-grade fever, and antibiotics that only slightly shrank his enlarged underarm lymph nodes, doctors performed a bi-needle aspiration surgical biopsy on William, 47, which turned up lymphoma. It has been in remission since the last of his 12 bi-weekly chemo treatments last May.

William has been on leave since December from his job with California Pacific Medical Center, most recently as a patient accommodation representative, where he admitted many HIV-positive lymphoma patients. He plans to return to work in October.

HIV-positive since 1989 and healthy except for one bout of microsporidium, William has taken protease inhibitors since 1997 and took part in an AIDS Health Project HIV support group for four years.

Tom Leahy, a registered nurse in UCSF's bone marrow transplant unit who worked with Dr. Lawrence Kaplan in San Francisco General Hospital's Ward 86 from the mid-1990s through 2003, is the group's other co-facilitator. He can help HIVers distinguish lymphoma symptoms from HIV viral response.

The new group will help participants identify and mobilize an informal support system for weekly transportation to and from hospital appointments, and address possible changes in relationships. Additionally, the group will provide support in communicating with friends and family when, after a traumatic cancer diagnosis and disability, many independent, employed people suddenly need assistance.

"It's a total surprise to many people who are high functioning and all of a sudden now have to put life on hold for six months to get aggressive treatment," said Levy, 52, who holds a master's degree in social welfare.

The support group was also motivated by a need to identify HIV survivors willing to volunteer for the Leukemia Society's program, linking up those newly diagnosed with survivors who have undergone a six-hour training and are familiar with the society's services.

Many newly diagnosed patients entering treatment want to hear from treatment survivors, said Shirley McGrath, the Leukemia and Lymphoma Society's patient services manager.

"Imagine being alone and you've been diagnosed and not knowing anyone else?" asked McGrath. "Who do you talk to other than the doctor?"

"The emotional part after chemo is not talked about much," said William, the patient. "I got real emotional when treatment stopped, crying all over during the night."

After chemotherapy William experienced an enlarged heart; sudden, drastic baldness; nausea; sore mouth; and neuropathy (numbness and tingling feet). He felt a sense of loss once the treatment and corresponding counseling was over.

"No one really sits down and says when treatment is over that those feelings come up. You're taken care of during chemotherapy. Once it's over, you're on your own. It felt like, 'you're treatment's over, bye bye,'" he said.

If lymphoma returns, it most likely happens in the first two years, then the odds decrease 10 percent per year.

"They need to know there's hope, and ways to deal with [it]," said Leahy, who can classify the conundrum of symptoms like sore throat, a lump behind the ear or in the groin, or weight loss and offer "good solid, correct and current information about the rapidly changing dynamic" of drug trials appropriate for those who are HIV infected.

The support group, which starts September 21, will have input from the patients.

"We leave it up to participants," said Leahy, who applied to facilitate the group at his colleagues' suggestion. "We'll keep it in certain parameters. It's their support group. It's not a nursing lecture."

The HIV lymphoma patient support group meets every third Wednesday at 1390 Market Street, Suite 1200 at 6 p.m. To RSVP call Leahy at (415) 353-2220 or Levy at (415) 353-1304.

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