WHO IS BRIAN by Brian Reed

To the outsider or occasional passerby, Brian appears to be a healthy, married, 34-year old self-employed professional with two young children, living a normal life in a nice suburban Washington, D.C. neighborhood. He enjoys reading, golf, and spending time with family and friends. He is also an active member of Centreville United Methodist Church and routinely volunteers in the children's nursery.

However, on the inside, Brian is suffering a daily fight with a rare form of cancer that renders him weak, fatigued, and nauseated, keeping him from enjoying many of the activities that a typical father of young children would experience on a daily basis. There are times when going to a social event for a couple of hours or engaging in a strenuous activity can put him in bed with exhaustion for the remainder of the day.

Brian graduated from Virginia Tech in 1993 with a B.S. in Finance and, like many of his good friends, took a job with Andersen Consulting in Washington, D.C. His closest friends today remain those he met as a member of Beta Theta Pi and those he worked with during his three years at Andersen Consulting. In 1996, an old friend from Blacksburg, Sonu Singh, gave Brian the opportunity to be part of a small but fast-growing business called Exposoft, Inc. He spent several years expanding his business acumen and eventually moved into a sales position for NextLinx Corporation. Sonu provided Brian every opportunity to grow the business and was always there to provide insight, guidance, and confidence (as well as wardrobe advice). As Sonu went professionally, so did Brian - from NextLinx to Metamor to PSINet and back to NextLinx.

Like a typical sales executive, Brian felt the pressures of closing business and making quota. However, in early 2000 his body was not handling these pressures in a typical manner. In sales meetings, Brian would get flushed in the face, feel heart palpitations, and swell in his face, hands, and legs. At first, these symptoms were mild and would go away after the stress dissipated. However, on the morning prior to an annual trip to Las Vegas, Brian noticed that he had gained approximately 10 lbs. overnight and went to an urgent care center to discuss his situation with a doctor. After a "thorough" examination by urgent care standards, the doctor in the center determined that Brian suffered from anxiety and depression. He gave Brian the OK to travel to Las Vegas for the weekend. Unfortunately, from the time his plane took off, Brian knew something wasn't quite right. Sitting next to Senator Barbara Boxer, Brian struggled to discuss politics during the 5-hour flight, all the while noticing that his ankles and lower legs were swelling. Being a stubborn male and not wanting to ruin his Las Vegas trip, Brian made an error in judgment and continued an all-night outing with his friends, leaving him swollen and 15 lbs. heavier by the morning. Realizing something was very wrong, Brian checked himself into a local Las Vegas hospital for testing and spent the day and night being monitored. After over 12 hours in the hospital, the doctors could not come to a logical diagnosis for the problem, except that Brian needed diuretics to relieve the fluid from his body and needed to reduce the anxiety and stress in his life.

After returning home, Brian suffered these same symptoms on an episodic basis for another two years. During that time, he saw several doctors, nutritionists, and endocrinologists who were unable to correctly diagnose what was happening to him. The same answers were always given: "Maybe your diet is too high in sodium. You have too much stress at work and your body just reacts differently to stress." Brian's friends joked during flag football games that he looked like the "Michelin man" or "Doughboy". In fact, several close friends nicknamed him "Lo So" for the fact that doctors told him he needed to have a low-sodium diet. During this time, exercising and playing sports became a struggle for Brian. Activities that he usually breezed through became an ordeal, bringing him to his knees in exhaustion. While Brian continued to believe that he was just "different", Brian's wife, Erin, and a very close friend, Jenny Rossiter, did not accept the doctors' answers for Brian's condition. At the time, Jenny was working at Washington Hospital Center and relayed information about Brian to doctors in whom she had confidence. Everyone agreed that something else was going on and she urged Brian to meet with a "reputable endocrinologist". Brian continued to suffer from the same fatigue, flushing, and swelling on a more frequent basis.

Finally, in the summer of 2002, Brian met with Dr. Selvaggi in Fairfax, VA, who was the first doctor to dismiss the "anxiety and depression" diagnosis. She listened to Brian's story and asked one simple question, "Have you had your cortisol level tested?" The answer was "no". How could all these other doctors not have tested for this? She performed an initial blood test that revealed a level of cortisol in Brian that was "off the charts". In fact, it was tested again just to make sure the lab had not done something wrong. The second test provided the same results. This news was both good and bad for Brian. The good news was that Brian was getting somewhere in the diagnosis of his condition; the bad news was that it was most likely caused by cancer. The next step in the diagnosis involved testing the level of adrenocorticotropin, or ACTH, a hormone that stimulates the adrenal glands to produce cortisol. Again, the results were "off the charts". The results of these tests, combined with the symptoms of fatigue and swelling of extremities, indicated Brian suffered from Cushing's Syndrome, a very rare condition, especially for a male. The next step was to determine the cause of the Cushing's Syndrome. Brian underwent many CT-scans, MRI's, and PET scans, all aimed at finding the cancer that was causing this syndrome. In most cases, Cushing's is caused by a tumor in the pituitary gland or adrenal glands. When not located in these glands, most often the tumor is located in the lung. In absence of these, the remaining location is ectopic, or not residing in any organ. The scans revealed a large malignant mass surrounding the heart classified as an ectopic neuroendocrine thymic carcinoid. It is not known how long the tumor has been there, but is evident that it originated in the thymus region of the chest and has grown slowly for many years. The tumor secretes an excessive level of ACTH in the body that signals the adrenal glands to overproduce cortisol causing the Cushing's related symptoms. This presentation of neuroendocrine tumor is very rare. In fact, Brian is one of fewer than 150 documented cases in the world. Unfortunately, due to its rarity, there is no standard treatment protocol and surgery has been the only effective course of action.

In December 2002, Brian underwent open-heart surgery to remove the tumor at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City. Unfortunately, due to its proximity to the great vessels of the heart and lungs, the surgeons were only able to remove approximately 70% of the mass. After recovery, Brian, his wife, Erin, and son, Carter, moved temporarily to NYC to undergo high-level radiation therapy in early 2003. During that time, Dr. Sauter, an endocrinologist at MSKCC, put Brian on a heavy-dose of medications, including monthly injections, to help regulate the level of ACTH and cortisol. Unfortunately, these medications do not kill the cancer but try to manage the excessively high hormone levels in his body. Most people have difficulty taking these medications due to their toxicity to the body. However, Brian's body was able to tolerate the medications at very high doses. The doctors were surprised and thrilled to see his body responding positively. He routinely visited NYC for over a year and a half, each time receiving positive feedback about his condition. The tumor was not growing, his episodic swelling had subsided, his cortisol level was being controlled by medication, and his overall energy level increased. Overall, Brian's quality of life had improved.

In March 2005, Brian began having debilitating migraine headaches, severe heart palpitations, flushing, and shortness of breath. Already scheduled for a routine follow-up visit that month, Brian made the trip to NYC, only to be urgently admitted to the hospital due to very high blood pressure and an imbalance in blood chemistry. During his hospitalization, doctors found new growth in several lymph nodes in Brian's chest, neck, and lungs. In addition, a small spot was found in Brian's scalp. At this point, Brian's team of doctors discussed potential treatment options, including standard chemotherapy and various clinical trials. Standard chemotherapy has not proven to be effective in treating this type of cancer and has many adverse side effects. Therefore, an investigational drug, despite its inherent risks, would be a preferred option. Six weeks later, Brian was scanned again to evaluate the progression of the growth. Brian and Erin were pleasantly surprised to hear that the scans revealed that growth had slowed down and that some of the tumors had slightly reduced in size. The doctors explained that this behavior is quite typical of carcinoid tumors. They tend to grow a little, then stabilize for a while before growing again. After the doctors reviewed the most recent scans (late April 2005), it was determined that no treatment would be recommended at this time. Further scans have been scheduled for late June.

Doctors then turned their focus to managing the blood pressure issues and continuing Brian's regimen of medications at a higher dose in an attempt to control the symptoms. Unfortunately, after several weeks, the medications that had previously controlled the level of cortisol in his body were no longer effective and had started to become toxic to his liver and kidneys. It was no longer an option to continue his medication on a long-term basis. After many blood tests and adjustments to daily medications, Brian's team of doctors at MSKCC determined that the best course of action was to have his adrenal glands removed. Surgery was scheduled for May 27 at MSKCC. Removing the production line for cortisol was the only viable option to control the situation. As a result, they are expecting an improvement in his blood pressure, blood chemistry levels, and his borderline diabetic condition. He will be on a complicated hormone replacement regimen for the rest of his life; however, Brian will no longer need to take medication that has become toxic to other organs of the body. The doctors are optimistic that the surgery will improve Brian's quality of life.

The fight doesn't stop with this surgery, but it is another step in maintaining a normal life while other alternative treatments are examined to treat the cancer. Although no treatment for the cancer has been recommended at this time, the doctors have assured him that he will need some type of treatment in the future. The timing of the treatment will be determined by follow-up scans, as well as how Brian is feeling. Since chemotherapy has not been proven to be effective with this type of cancer, the doctors and the Reed family are hoping that there will be new treatment options available by the time further treatment is required.