Today I came across a blog that explores alternative treatments for cancer, of all types. Our friend Charlene Kaforey, who recently experienced good results for her mesothelioma with an alternative cancer vaccine program at the ITL Alternative Cancer Treatment Clinic in the Bahamas, posted her story to the site. The blog is a project of Jonathan Chamberlain, who authored two books about alternative therapies after losing his wife, Bernadette, to cervical cancer in 1994.

The blog, called the Cancerfighter’s Weblog, explores “alternative cancer therapies and ideas,” touching on a wide range of topics that also includes general health and wellness through alternative, holistic or natural medicines and practices. He encourages people like Charlene, who are trying non-traditional therapies, to share their stories and experiences with others, and provides a forum for people to ask questions.

John has another web site, Fighting Cancer: A Survival Guide, where he shares some personal stories of his and Bernadette’s life, and addresses topics including how to deal with a diagnosis of cancer, advice for caregivers, stories of good and bad experiences with alternative treatments, and good and bad stories about orthodox treatments.

An English teacher living in Hong Kong, John has authored textbooks for secondary school students, and also has written a number of other books on topics including Chinese folk religion, a profile of a famous Chinese gambler, and a touching biography about the life of his daughter, Stevie, who had Down Syndrome.

Today I received a wonderful email from Charlene Kaforey. Some of you have followed along with her story about her own fight with mesothelioma, which was published here in March and April. For those that are unfamiliar, Charlene, who just turned 49, was diagnosed with mesothelioma in June 2007.

With a stage III diagnosis, she underwent chemotherapy treatments from October to December of that year, and then, faced with the prospect of a pleurectomy or pneumonectomy, which would remove part or all of the affected lung, decided to try alternative medicine.

Charlene went to the ITL Alternative Cancer Treatment Clinic in Freeport, Grand Bahamas, in January 2008, where she underwent an 8-week treatment called Immuno-Augmentation Therapy (IAT). Upon returning home, she administers her own vaccines several times a day, and has been continuing a twice-daily intravenous vitamin C program with the help of a nurse friend.

She celebrated her birthday Sunday, then on Monday went for her first CT scan since beginning her alternative treatment. Charlene reports, “There was overall improvement in my scan results!! The tumor was half of what it was previously, the pleural thickening was reduced, fluid is reduced and the pleural effusion is gone. I am thrilled, and stunned. Of course, I’m still guardedly optimistic, since I do still have cancer and the results could change at any time. But this, for now, this is the best birthday present I could have gotten!”

Alternative therapies like IAT are not authorized by the American Medical Association, and there is still a lot of skepticism and caution surrounding them. Generally, medical insurance does not cover alternative medical treatments like IAT.

Treatments that are not considered conventional medicine, but that are undertaken along with traditional medical therapies, like chemotherapy, radiation and surgery, are called complementary. Treatments used in place of conventional medicine, like the IAT Charlene is undergoing, are called alternative medicine.

IAT, along with other complementary and alternative medicine (CAM) programs, are being studied by the U.S. Department of Health and Human Services, the Food and Drug Administration (FDA) and the National Center for Complementary and Alternative Medicine (NCCAM), which operates under the Department of Health and Human Services.

Patients considering complementary or alternative treatments are encouraged to thoroughly research possible risks, benefits, and scientific evidence, and to discuss alternatives with their physician.

For more information, visit the NCCAM online, in the “health” section under “be an informed consumer.” They have information on topics including what to do when considering using CAM, how to select a CAM practitioner, and paying for CAM treatment.

I will be exploring CAMs in the coming weeks, and hope to talk to physicians and alternative and complementary treatment doctors and specialists about these programs, as well as patients like Charlene who are using them. If you’ve had an experience with a CAM, leave a comment or email me and share your experience.

I am thrilled for Charlene! Happy Birthday!!

The ITL Experience

While undergoing chemotherapy to treat her mesothelioma, Charlene Kaforey had time to explore her options. As a Stage III patient, she was worried about her chances for quality of life or even long-term survival if she underwent surgery.

During this time, she found information about the ITL Alternative Cancer Treatment Clinic, located in Freeport, Grand Bahama Island. After talking to patients who reported success, she decided to try this unusual route for her own treatment.

She made her first visit to the clinic January 7, 2008. Mesothelioma patients like Charlene initially complete an 8-week course of treatment, which includes daily blood tests, several injections daily of a serum designed to boost the body’s immune system so that it can fight the cancer, and intravenous vitamin C plus two shots of cancer vaccines, twice per week, she says.

The blood work is to monitor the body for responsiveness to the treatment in order to fine tune it to the patient and set up an ongoing course that is administered by the patients themselves after leaving the clinic, Charlene says. Treatment at ITL is a process that lasts for the rest of your life, she explains.

Now back home in New York, she administers her own shots eight to 12 times per day. She also is continuing the intravenous vitamin C at home, although she says that is optional. She also needed to complete 5 of the 12 weeks of the cancer vaccines at home. Patients return to the clinic every four months for two weeks at a time for re-evaluation and adjustments to their serum regimen. Charlene is scheduled to return in June.

“What they tell you at ITL is that it will not necessarily make the cancer you have go away, but will hopefully prevent it from spreading any further,” Charlene said. “So if they can do that, and give me six years, that would be wonderful. That would be six quality years instead of two miserable years.”

Patients considering ITL need to know that because the facility is considered alternative medicine, it is not accredited by the American Medical Association or other governing boards of that type, and some insurance companies will not cover the cost of treatments.

ITL requires payment at time of services, which, according to the clinic’s web site, for Immuno Augmentive Therapy (IAT) of the kind Charlene receives, run around $7,500 for the first four weeks and about $700 per week thereafter. That cost does not include the vitamin C IV’s or the vaccines. Patients also must cover the costs to travel to the facility, and for accommodations during their eight weeks of treatment.

“Everyone has had different experiences [with insurance],” Charlene said. “I submitted my bills to my insurance company and I’ll just see what they do. Some people get partial payment, some insurance pays nothing,” she says. “But what’s your life worth to you?”

In addition to the financial challenge, there also is the issue of travel and time away from family. Charlene was lucky; she had different family members with her throughout her 8-week stay. They became as much a part of daily clinic life as she did.

“Seeking treatment at the clinic definitely involves family decisions. The cost is a major consideration and so is the time away from home. While the cost is much less than the approximately $200,000 price tag involved with the surgery/chemo/radiation regime, insurance will pay for those debilitating treatments. Plus, knowing you may have limited time remaining, do you want to leave family and friends for 2 months,” Charlene said. “It is a really individual decision. You have to look realistically at what your own choices are and what you need to do for yourself and your family. We viewed this as an investment of time and financial resources for the long term. Two months away is worth it if I get 4-6 more years with my family.”

A big part of Charlene’s experience at ITL was meeting other mesothelioma patients, as well as people with other types of cancer, and sharing stories. Her last week at the clinic, she said there were seven mesothelioma patients there, all around the same age – mostly women in their 40s and 50s, with whom she felt a real connection.

“You talk to real-life people who are there, who are surviving and living quality lives after their doctors had told them there was no hope. The stories are so different and so amazing, and yet you share so much because you’re all going through this. It gives you hope to meet patients who have survived 28, 20 ,12 or even 4 years after being given a death sentence,” Charlene said.

That connection with other patients has led Charlene to explore forming an outreach and support group where she lives, in Rochester, New York, where she plans to work for fund raising for a cure and to raise awareness of mesothelioma.

Alternative medicine is controversial. Its results often do not have a long history of documentation. People who choose this route understand that they are stepping out into largely uncharted waters.

Charlene is happy to share her story with others who are facing mesothelioma in their own lives, either as a patient or as a family member of someone with meso.

If you would like to talk with Charlene, please email wendi@mymeso.org and I will be happy to forward your information to her.

Exploring Alternatives

After being diagnosed with mesothelioma at age 48, and exploring traditional options and undergoing four rounds of chemotherapy, Charlene Kaforey was looking for alternatives. Her physicians had earlier recommended a pleurectomy or pneumonectomy, which would remove part or all of the affected lung. That option was still on the table following chemo.

But after doing extensive research, Charlene was concerned about quality of life after such a procedure. Diagnosed as Stage III, she knew that only 25 percent of patients at her status survive 20 months, with less than 10 percent surviving 5 years. Both surgeries involve significant mortality rates and require 6-9 months recovery time.

“Currently, I don’t have a lot of symptoms,” she says. “I thought, why, if I feel good, do I want to end that by having the surgery and possibly never feeling good again?

“When I was at the hospital, I looked around the waiting room and saw everyone in wheelchairs, or hooked up to oxygen. I actually started crying. People don’t look good. They don’t look healthy, and they’re struggling. I thought, is this what’s going to happen to me? I didn’t feel a lot of hope.”

During her chemotherapy, from October-December 2007, Charlene researched mesothelioma and its treatments relentlessly. That was when she discovered the ITL Alternative Cancer Treatment Clinic, located in Freeport, Grand Bahama Island.

According to its web site, ITL Cancer Clinic was founded in 2003 and is directed by Dr. John Clement. ITL Cancer Clinic is the operating company for the Immunology Research Centre Ltd., a not-for-profit corporation of the Commonweal of the Bahamas, licensed to treat patients diagnosed with cancer. The Immunology Research Centre was founded in 1977 by Dr. Lawrence Burton, the developer of Immuno-Augmentive Therapy (IAT). The clinic treats all kinds of cancer, including mesothelioma.

Charlene’s daughter, working on a college project about promoting mesothelioma awareness inspired by her mother’s illness, discovered a web site with a link to the clinic. Charlene contacted the organization on whose site she found the link, to find out if they knew anyone who had been treated there. Initially, the answer was no. But two weeks later, they called her back and put her in touch with an ITL patient.

“I talked to her and she’s 6 years out,” Charlene said, which means the patient has survived six years after diagnosis. “She has it in both lungs and here she is, traveling and living life.”

Encourged, Charlene contacted the ITL Clinic directly for more information. Staff reviewed her medical history to see if she would be a candidate for treatment at ITL, and put her in touch with other mesothelioma patients being treated there.

“I’m skeptical by nature,” Charlene says. “It’s so out of the ordinary, but when I was talking to people out 6 years and feeling good compared to others who did more traditional treatments, some of whom didn’t make it very long, or life was hard, and it seemed like a good option for me.”

Friends and family initially resisted the idea, feeling that she should take the more traditional path, including surgery.

“People thought I was crazy at first. They had read all the literature [from traditional treatment facilities] and felt that I needed to do the surgery,” Charlene says. “Do I know for certain this will work? No. But I just don’t think the statistics support my having a good quality of life or a good chance of survival with surgery and traditional methods. So I’m going to do it.”

Next: The ITL Experience

Charlene’s Fight

When Charlene Kaforey, 48, was diagnosed with pleural mesothelioma in July 2007, she immediately began seeking out information and treatment options.

The prognosis for mesothelioma is still bleak. There is no cure, and most studies estimate survival time between 4-12 months, depending on the stage of presentation. Charlene’s mesothelioma was diagnosed relatively early, so she was hopeful.

She visited mesothelioma specialist Dr. David J. Sugarbaker at Brigham & Women’s Hospital in Boston, Mass., Dr. Valerie W. Rusch at Memorial Sloan Kettering Cancer Center in New York, and Dr. Harvey Pass at the NYU Cancer Institute.

Immediately, doctors talked about extrapleural pneumonectomy, a surgery to remove the entire lung, entire diaphragm, and the lining of the chest cavity and the heart. Surgery would be followed by 6 weeks of radiation, and possibly chemotherapy. One doctor even talked about performing a heated chemotherapy wash of the chest cavity while on the operating table. At that time, they believed Charlene was a stage I, and such surgeries could give her a 40 percent chance of a 5 year survival. One doctor mentioned getting her as much as 10 years.

One of the doctors talked about limiting the surgery to a pleurectomy/decortication, a technique to remove the parietal pleura from the lung. The median survival after pleurectomy for malignant mesothelioma ranges from 6-21 months, and 9-40 percent of patients survive up to 2 years. However in later stages, the survival rates are almost identical between the two surgeries.

Research is still unclear as to whether extra-pleural pneumonectomy provides significantly greater benefits than pleurectomy, and if either is significantly more effective than non-surgical options.

Charlene didn’t have a lot of tumor bulk, so she was sent for a mediastinoscopy, a biopsy surgery that allows doctors to view the middle of the chest cavity and to remove lymph nodes from between the lungs to test them for cancer or infection. They found that Charlene did have lymph node involvement.

“I went from a Stage I to Stage III overnight,” she says. “It was shocking.”

Because of the lymph node involvement, doctors recommended she postpone considering pleurectomy or pneumonectomy and undergo chemotherapy. Survival rates from either surgery for a Stage III patient is much less, and only 25 percent survive 20 months, with less than 10 percent surviving 5 years. Both surgeries involve significant mortality rates and require 6-9 months recovery time.

“Looking at it now, I feel in some ways that having the lymph node involvement was a godsend for me,” Charlene says. “I mean, my condition was more serious, but because I was doing the chemotherapy, it gave me time to look for more information and to really think more about my options. Otherwise, I would have rushed into a very serious surgery with a long, difficult recovery and I’d probably be without a lung and diaphragm right now.”

Charlene offers one word of caution to meso patients.

“While you may feel time is of the essence, don’t rush into a procedure until you really understand what is involved, and what benefits you can expect to receive, what the risks and complications are, how long and difficult the recovery will be,”she said.

She talked to other meso patients and read everything she could get her hands on. Quality of remaining life is a big issue to consider.

“I realized that I might have only 18 to 30 months maximum to live, and that I would spend at least 9 months in a brutal recovery. I was feeling good with little to no symptoms. I couldn’t justify giving up my good health to surgery, knowing I may never feel good again, and might have only another 9 months of poor quality life after recovering from the surgery,” Charlene says.

Next: Charlene explores alternative medicine

Charlene Kaforey, 48, had been troubled by stomach problems for almost four years. She and her doctors tried a variety of things to determine the cause, settling on a tentative diagnosis of Crohn’s Disease. But none of the medications typically used to treat Crohn’s had any effect on Charlene’s condition.

Frustrated, in the fall of 2006 she tried a new medication for a two-week protocol, plus a gluten-free diet for six months, and finally experienced some relief. But then, six months later, the pain and discomfort returned.

Since she had been off Crohn’s medications during the experiment with her diet, doctors decided it would be a good time to try some new tests, and included a CT scan. In March 2007, tests showed nothing wrong with Charlene’s stomach, but something odd at the base of her left lung. The doctor conducting the scan didn’t think it was anything serious, but recommended that she follow up with her primary care physician anyway.

In May 2007, Charlene received a chest CT scan, which revealed three spots on her left lung. Doctors suspected lymphoma. A cardio-thoracic specialist followed up with a PET scan, which showed the same three spots. He recommended a “wait and see” approach, suggesting they could check the area again in three to six months.

“I didn’t want to wait,” Charlene said.

At her request, doctors did a lung biopsy in July, and she was told she has mesothelioma.

The actual number of tiny tumors inside her chest were “too numerous to count,” and obviously most of those had not shown up on her scans.

“I’d never heard of it,” she says. “There are a few commercials on TV, but other than hearing the word, I was not familiar with it. Most people I tell just look at me, and they’ve never heard of it either.”

The diagnosis was particularly surprising, since the average median age of onset of symptoms is 70, according to most studies, and mesothelioma usually affects men more frequently than women. Charlene said she was exposed to asbestos when she was a child, but she cannot discuss the details because she is currently pursuing legal action.

“When you think of the numbers of people that have been exposed to asbestos in their lives, you wonder why there are few people that get [mesothelioma], as compared to other types of cancer. It’s still pretty rare,” Charlene said.

In the U.S. current statistics show between 2,000-3,000 people are diagnosed with malignant pleural mesothelioma each year. However, 10,000 Americans die each year from all asbestos-related diseases, according to statistics compiled by the Environmental Working Group. And, mesothelioma was not tracked as a specific cause of death by federal health officials until 1999, EWG points out, so actual totals for mesothelioma may be much higher.

“There is a possibility that my brother and my parents could be at risk of mesothelioma, because they would have been exposed at the same time as me,” Charlene worries. “You just don’t know what causes you to get it, and not someone else.”

As she continued to research her new diagnosis, Charlene was disheartened to find that the outlook for most mesothelioma patients is bleak. The Center for Mesothelioma and Asbestos-Related Diseases at the University of Maryland Medical Center estimates median survival time between 4-12 months after discovery.

Next: Charlene begins her fight.