Medical Community Mobilized to Help 17-Year-Old MM Patient
Jorge Uribe is a 17 year old teenager who lives in Kennewick, Washington. Like most teenagers, his life had it's fair share of ups and downs. But he had always persevered and was looking forward to a productive life with his 18 month old daughter and future bride. His health had never been an issue.
On December 5, 1997, Jorge suddenly experienced severe pain in his left lung. Each breath, shallow as it was, was a reminder that something was terribly wrong in his lung. He was rushed to the Kennewick General Hospital emergency room. At that time doctors determined that his left lung was collapsed (hemopneumothorax). He also had a tension pneumothorax, which is air that has entered the pleural space and is trapped because it can not escape the same way it has entered. The doctors drained four (4) liters of straw-colored fluid from his pleural space.
The next day Jorge had a CT scan. On December 7, 1997, he had a bronchoscopy and thoracotomy. A needle biopsy was performed on the 9th of December. Fifteen specimens were taken. Five (5) were obtained from the periphery (outer surface) of the pleural space, five (5) from the mid portion and another five (5) were taken from the deeper portion of the pleural space. All specimens were sent to the pathology department at the Kennewick General Hospital in Kennewick, Washington.
Pathologists at Kennewick found atypical mesothelial proliferation. Due to Jorge's tender age -- which did not fit the profile of a mesothelioma patient -- a second opinion was ordered. The specimens were sent to Dynacare Laboratory of Pathology in Seattle. The second group o pathologists also favored mesothelioma.
However, in view of the patient's age, Dynacare declined to give a final report. It was too strange. They decided to seek a third opinion from Dr. Samuel Hammar, who is recognized world wide as an expert in distinguishing mesothelioma from other tumors. Dr. Hammar reviewed the specimens and reports and gave his final report on December 17, 1997. After using the full battery of diagnostic tests, including electron microscopy, Dr. Hammar confirmed the tragic yet inescapable conclusion that Jorge Uribe, at age 17, had epithelial mesothelioma.
After learning of his grim diagnosis, friends and family searched the Internet for information about mesothelioma. We were contacted. Jorge's friend read the profiles on our patients and saw a glimmer of hope. "I cannot believe after reading many of the letters and articles here on this page that a 17 year old boy should just go home to wait to die, when others have lived for 8 years with this disease at twice that age. He is still young enough that some treatment should be planned. Is there any research projects or a physician somewhere that might be inclined to help this boy live longer than the 3-4 months these doctors are giving him."
We immediately contacted several prominent mesothelioma experts regarding Jorge, including:
Dr. David Sugarbaker, Brigham & Women's Hospital, Boston, Massachusetts
Dr. Harvey Pass, Karmanos Cancer Institute and Wayne State University in Detroit, Michigan
Dr. Robert Taub, Columbia University Medical School, New York, New York
Dr. James Mault, University of Colorado Medical Center, Denver, Colorado
Dr. Ralph Aye, Swedish Cancer Institute, Seattle, Washington
The interest was overwhelming. Within 24 hours of my contact, Dr. David Sugarbaker responded: " Roger I would be happy to see him."
Dr. Harvey Pass responded: " I would be ready to see him yesterday. ie. I will see him ASAP. Harvey Pass"
Dr. Robert Taub replied: " We would be happy to call him and find out how we can be of assistance."
Due to the close proximately to his home town, we arranged for Jorge to meet with Dr. Ralph Aye at the Swedish Cancer Institute in Seattle, Washington on December 22. Dr. Aye had operated on one of our clients, Sam Paffile. On January 9, Jorge returned to Seattle to undergo several tests including an MRI and an additional biopsy. Dr. Aye and his colleague, Dr. Hansen, decided that Jorge was not eligible for surgery due to the extension of the tumor and the probability that they would not be able to remove all of it.
On January 14, 1998, we were asked by Jorge's family if we could help him enroll in the Gene Therapy program under the care of Dr. Daniel Sterman at the University of Pennsylvania. We contacted Dr. Sterman on January 17 in an effort to enroll Jorge on the fast track (the waiting period is usually 2-3 months from date of acceptance). We also asked Dr. Sterman that if Jorge could not bypass the waiting period, could he recommend any other program. On January 19, Dr. Sterman replied:
Roger,
I would be glad to review George's case for possible enrollment in our gene therapy or photodynamic trials here at UPenn.
You may want to contact Dr. Jay Kolls at LSU medical center in New Orleans as well regarding his gene therapy trial, or any of the centers offering Onconase or CPT-11.
We have, unfortunately, many patients in similar dire straits, so I cannot promise to move George up the waiting list for our trial.
Dan Sterman
On January 19, we contaced Dr. Kolls at LSU. He responded promptly:
Mr Worthington:
Regarding your patient in Washington, he may be a candidate for our trial. I have attached the inclusion and exclusion criteria below. He would have to travel to LSU four times. We are in the part of the study where pateints receive three courses of treatment three weeks apart. He could travel back to Washington in between the course of therapy. If you wish to pursue this, the patient may conatct our nurse coordinator, Judy Norton at the Stanley Scott Cancer Center, 504-568-5151. I will be out of town this week at a Gene Therapy Conference, but Ms. Norton will have may number. I will be back in the office 1/26/96.
Best Regards,
Jay Kolls, M.D.
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5.0 PATIENT SELECTION
5.1 A diagnosis of malignant mesothelioma must be established histologically.
5.2 Patients may initially have been Stage I, II, or III. Stage IV patients initially or at present are not eligible.
5.3 The patient's performance status must be 0 or 1 by ECOG standards.
5.4 Adequate bone marrow, kidney and liver function must be shown by: Hct > 30, WBC > 4,000, platelets > 100,000, creatinine < 1.5 mg%, Creat. Cl > 50, normal bilirubin, SGOT and alkaline phosphatase < 1.5 x normal.
5.5 Patients must not have a significant history of heart disease (frequent angina, MI within the past 6 months, congestive heart failure requiring daily treatment).
5.6 A patient is not eligible if there is a history of a previous malignancy, other than squamous or basal cell carcinoma of the skin. Patients with childbearing potential are not eligible.
5.7 Patients who have received chemotherapy or radiation therapy within 6 weeks of enrollment are not eligible.
5.8 Patients with evidence of moderate to severe pulmonary disease (FEV1 < 40% predicted) are not eligible.
5.9 Patients requiring steroid treatment are not eligible.
5.10 The patient must have an adequate pleural space which will permit placement of a chest tube or catheter.
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We will update this profile when Jorge has enrolled in a treatment program. We are also searching for a clinic in the Northwest that is offering the Onconase vs. Doxyrubicin randomized trial. This is a heartbreaking case. We have filed Jorge's case in Los Angeles, California, where Jorge was exposed to asbestos as an infant and child.
** POSTED JANUARY 19, 1998 **
An Update -- January 24, 2001
After consulting with experts in Seattle, Portland and San Francisco, Jorge was told by each of them that the tumor was too large to operate. It had attached itself to his ribcage and diaphragm. Jorge underwent several cycles of chemotherapy and radiation. His last CT scan in December of 2000, showed little difference in the size of the tumor since 1997. Jorge firmly believes that if he would have had the surgery, he would not have lived this long.
He has had pneumonia twice and gets sick very easily. He has learned that he cannot go outside without a coat, gloves and a cap covering his ears. Yesterday he lost his wallet and had to replace all his information. It was a chore for him to go out and get all the new identification that he needed, but he said that it was necessary.
Today, Jorge's life revolves around his family. He currently lives with his parents, brothers, sisters and his 4 year old daughter. He also hopes that his grandmother and cousins will soon move from California up to Washington.
On March 21, 2001, Jorge will celebrate his 21st birthday. Jorge just takes one day at a time. "You can't do any more or any less. You just gotta enjoy what you got"
Enjoy Jorge, enjoy.
Mr. Jorge Uribe passed away on March 25, 2001