Together with his oncologist: Matchmakers for new drug trials for multiple myeloma

Diagnosed last fall with smoldering multiple myeloma, 45-year-old Glenn Codderre relies on his oncologist for the standard drug regimen now used to treat the disease. Glenn, a Boston-area consulting manager for Hewlett-Packard, began his search for trials through the nonprofit Multiple Myeloma Research Foundation, which contracts with EmergingMed.

Together with his oncologist, he decided not to participate in one trial EmergingMed found because of concern about side effects and the trial drug's interaction with his current medications. He says the consultant he works with at EmergingMed "helps me save time and stay informed on clinical trial options while I continue to balance family and professional responsibilities." He hopes they will find a drug trial and that the drug being tested will slow the progression of his disease to cancer.

For-profit matchmaker firms like EmergingMed help patients identify experimental drugs that might help them and connect patients with the appropriate clinical trials. In Glenn's case, an effective drug might slow the progression of his disease to cancer. EmergingMed narrows its searches by taking into account the stage of the disease and the patient's prior treatments.

EmergingMed gets paid through fees that it charges medical centers, advocacy groups and research sponsors. The company's web tool is free to patients. The company doesn't disclose personal information gathered on its web site.

Advice to the families of cancer patients: Consider using a matchmaking service to find a clinical trial of a drug that could help your loved one.

Read another clinical trial story.

Thanks to Laura Landro for the source article in the Wall Street Journal of May 14.

Silicone Breast Implants: Platinum Suzy's story

I worked for a national real estate company as a District Manager for nearly 19 years. I started with them in Houston, was transferred to Richmond, VA, then to Orlando and eventually to Nashville, where I have lived for the past nine years. In December of 2004, I was informed that all of my properties were going to be sold and that I would be laid off effective 5/1/05. This was fine. I was building a house and very busy with my son and my elderly parents, so the timing was very good for me personally. I had planned to take off the remainder of 2005 and return to work 1/1/06. I was turning 50 in November and my present to myself was breast implant surgery. I contacted a local teaching hospital and was told that they were having a clinical trial for silicone implants. When asked if they were safe, I was told that they had used them for 30 years and had never had any problems. I signed up, paid the $6,000 and had the surgery on 11/9/05.

Almost immediately I began to have unusual health symptoms. These included: neck, back and left shoulder pain, ringing in ears, dizziness, problems with depth perception, blurred vision, achy joints, fatigue, heart palpitations, memory problems, insomnia, tingling/numb hands and feet, twitching muscles, difficulty swallowing, and a metallic taste in my mouth. Prior to this, I had experienced only one of these symptoms - back pain resulting from a volleyball injury.

I spent all of 2006 getting sicker and sicker and more desperate to find out what was happening to me. Every day I would wake up with something new terribly wrong. By July I was terrified that I was going to die. I spent all my time in bed or in doctors' offices. At one point, I called my daughter and asked her to take my 12-year old son if something happened to me. I had never been ill like this before and never had to consult a specialist for any of these symptoms. The pain in my neck was so severe that I had cervical fusion performed on 8/2/06. Every doctor I was seeing and every physical therapist advised against this surgery after reviewing the results of the MRI's, but I felt this was the only option I had. Unfortunately, they were right. This surgery did not alleviate any of the symptoms I was having.

Sometime in September, my breasts began to ache and became hard. I visited my primary care doctor and my OB-GYN of eight years and they confirmed that I had developed contracture of the silicone implants. They were removed on 9/29/06. I never considered the problems to be connected to the silicone implants because I had saline implant surgery in November, 1995. I had no problems with these-no contracture, but I thought I needed to have the saline implants changed out because there was some rippling on the sides of my breasts. (I am on the thin side and the edge of the implant could be felt). Within a few weeks of the explant surgery, many symptoms were gone. By six months, all symptoms were gone with the exception of severe neck and thoracic back pain (which I still have every day and continue to do physical therapy for) and cognitive/memory issues that my doctor believes is due to the trauma of being so ill during the time I had the silicone implants. (Post Traumatic Stress Disorder is the diagnosis.)

Two doctors at the same medical facility have told me that I had a reaction to the chemicals in the implants. Although I do not fully understand the process that made me sick, I believe that my symptoms were caused by nerve inflammation due to exposure to the chemicals in the implants. I was tested for platinum and it was found in three different oxidation levels-0, +2 and +4 in my urine. I have asked INAMED for a list of the other chemicals, but they did not respond to my certified letter.

I have spent about $30,000 for the privilege of participating in the silicone research trial, the explantation, MRI's, and over 100 office visits to diagnose and treat my health problems. I am also uninsurable as a result of the treatments I have received.

However, the good news is that the vast majority of women get better once the implants are removed.

Advice to women thinking of having breast implants: Be sure to do your research first.

Read another of our breast implant stories.

The Animal House of drug research units: Human subjects – guinea pigs

On Sept. 11, 2001, James Rockwell was camped out in a clinical-research unit on the 11th floor of a Philadelphia hospital, where he had enrolled as a subject in a high-paying drug study. As a rule, studies that involved invasive medical procedures are more lucrative – the more uncomfortable, the better the pay – and in this study, subjects had a fiber-optic tube inserted in their mouths and down their esophaguses so that researchers cold examine their gastrointestinal tracts.

James had enrolled in many previous studies at corporate sites at places like Wyeth and GlaxoSmithKline. But the atmosphere there felt professional, bureaucratic, and cold. This unit was in a university hospital, not a corporate lab, and the staff had a casual attitude toward regulations and procedures. "The Animal House of research units" is what James calls it. "I'm standing in the hallway juggling," he says. "I'm up at 5:00 in the morning watching movies." Although study guidelines called for stringent dietary restrictions, the subjects got so hungry that one of them picked the lock on the food closet. "We got giant boxes of cookies and ran into the lounge and put them in the couch," James says. "This one guy was putting them in the ceiling tiles." James has little confidence in the data that the study produced. "The most integral part of the study was the diet restriction," he says, "and we were just gorging ourselves at 2 am on Cheez Doodles."

On the morning of Sept. 11, nearly a month into the five-week study, the subjects gathered around a TV and watched the news of the terrorist attack through a drug-induced haze. "We were all high on Versed after getting endoscopies," James says. He and the other subjects began to wonder if they should go home. But a mass departure would have ruined the study. "The doctors were, like, 'No, no!'" James recalls. "No one's going home, everything’s fine!" James stayed until the end of the study and was paid $7,500. He used the money to make a down payment on a house.

Over the years, James has enrolled in more than 20 studies for money. Today, fees as high as he received aren't unusual. Some people enroll in one drug study after another. For them, "guinea pigging" has become a job.

Browse for similar stories in our index at the very bottom of this page, or read another human guinea pig story.

Thanks to Carl Elliott for the source story In the Jan. 7 issue of the New Yorker.