By Kathy LaTour

The cancer patient of the new millennium has technology at his or her disposal that can assist not only in research but also in communication to ease the minds of loved ones and recruitment of help to simplify the complicated life of a cancer patient and his or her caregivers. Two projects grew from the designers’ own bouts with cancer, one as a caregiver and the other as a survivor. In each case, the newly diagnosed are benefiting from these online communities.

Lotsa Helping Hands

Carole Singer’s diagnosis of ovarian cancer in 1999 quickly became a community-wide project in Sudbury, Massachusetts, where she and her husband Barry Katz and their two daughters lived and worked.

“Carole was an active professional in the community and everyone wanted to help,” says Katz, who would come home from a day of treatment with Carole to find food on the doorstep and 15 to 20 calls to return. Katz would spend hours on the phone returning calls and arranging distribution of the food the family could not eat. “There was discomfort on both sides,” he recalls. “People called and didn’t want to feel intrusive, and yet we didn’t want to constantly be asking for something.” Katz quit his high-tech recruiting job to take care of Carole, who was in treatment for four years. She died in September 2003.

After her death, Katz took some time to decide what to do next. He realized he had the skills and the experience to respond to a need that was in keeping with the new technological world. Thus was born Lotsa Helping Hands (www.lotsahelpinghands.com), a free web service that provides community coordination for people going through life crises.

Through Lotsa Helping Hands, a patient’s multiple communities can log on to see what the person needs and sign up for specific tasks, from bringing food to running errands to providing transportation to walking the dog. One person serves as the coordinator and can add members and tasks to the site and deal with other administrative needs. When friends and family ask what they can do, they are directed to contact the coordinator to be added to the e-mail list. The new member receives a password by e-mail that allows access to the patient’s web page to sign up for tasks.

The site, which went live in early 2005, now has more than 200 active communities, Katz says, some with a handful of people and others with hundreds, such as the more than 250 people who signed up to help a single mom when a fire destroyed her home. Katz, who now devotes all of his time to Lotsa Helping Hands, and his staff of 10 plan to keep the website free by developing sponsorships that give links to consumer companies.

Lotsa Helping Hands has partnered with a number of national organizations that make the service available to their clientele in a co-branded format. Some of the partners include the National Ovarian Cancer Coalition, the National Marrow Donor Program, the National Multiple Sclerosis Society, the Colon Cancer Alliance and the Geriatric Oncology Consortium, which partnered with Lotsa Helping Hands after finding it the best solution to the problems faced by older adult cancer patients regarding transportation, meals and daily activities. The Susan G. Komen Breast Cancer Foundation lists Lotsa Helping Hands with its Co-Survivor Program resources.

“I have very much been an entrepreneur and followed my heart my whole life,” Katz says. “It makes sense for me to have pursued this. It was something that needed to happen, and something good is coming from something very tragic.”

Blog Doc Sees Red

Phillip Berman, MD, survived testicular cancer as a young man, which served as part of his motivation to become a radiologist. But when he was diagnosed with advanced non-small cell lung cancer in January of 2004, he needed a way to not only keep friends around the world informed of his condition but also to write out his feelings. The result: RedToeNail.org, an online community for people with cancer.

The site allows anyone to set up a secure blog (see CURE, Summer 2005) to record what is happening in his or her cancer experience. Friends can log on and ask for e-mail updates whenever an update is posted. “Your blog is whatever you make it,” Dr. Berman says. “Friends and family can leave comments, discuss and contact you through the blog. It can be open to the public or visible only to those you invite.”

The first question he’s often asked is the history of the name, a question Dr. Berman likes to answer. “I was pretty sure it was late in the fourth quarter when I was diagnosed,” he says. “I had metastases everywhere—liver, brain, bones. When I hit the one-year mark, I decided to paint one of my toenails red. And now my goal is to live long enough to earn a full set of painted toenails. I think of all the prayers and support every time I look at my toe.”

Dr. Berman hopes the blog site will grow with the support of doctors, nurses, researchers and companies who are on the cutting edge of cancer treatment. The organization, which provides its services free to the community, seeks sponsors to support the site, and 10 percent of the net profit goes to the cancer community.

Dr. Berman, who began Tarceva® (erlotinib) early in 2005, is now in remission. He painted a second toenail in December at the Life Beyond Cancer Retreat. He encourages cancer patients to blog as a form of therapy. “Writing about how you feel and what you are experiencing is a way to release some of the emotion in a positive and productive way. Your blog is your story—the good, the bad and the ugly. But it is an important story for your family, friends and loved ones.”