Paul Gonzales (California)

DSRCT Diagnosed 1/98 - Passed Away 4/11/01

 

Paul's Protocol   (from his mother, Judy Ramirez )

07/02/98: First seen at MSKCC
07/06/98: Started treatment with Topotecan, Cyclophosphamide and mesna
07/07/98: Cyclophosphamide, mesna
07/08/98: Mesna
08/24/98: Topotecan, Cyclophosphamide and  Mesna
08/25/98: Cyclophosphamide, Mesna
08/26/98: Mesna
11/02-11/22/98: Etoposide
12/21-12/24/98: Topotecan
02/22-04/12/99: Etoposide
05/27-06/26/99: Etoposide

05/27/99 Registered on Protrocol  97-24-Treatment with A1G4 vaccine
05/27/99: A1G4
06/11/99: A1G4
06/25/99: A1G4
07/28/99: A1G4
08/25/99: A1G4
10/20/99: A1G4 Off protocol

12/15/99-01/05/00: Etoposide
01/25/00-02/15/00: Etoposide
03/16/00-04/06/00: Etoposide

06/12/00 Registered on Protocol 99-71- Treatment with DX-8951F
06/13-06/17/00: DX-8951F
07/03-07/07/00: DX-8951F
07/24-07/28/00: DX-8951F
08/14-08/18/00: DX-8951F
09/04-09/08/00: DX-8951F
09/25-09/29/00: DX-8951F  Off 10/10/00

10/16-10/20/00: Irinotecan
11/13-11/17/00: Irinotecan
11/29-12/03/00: Irinotecan
01/24/01: Carboplstin
01/31/01: Carboplatin

02/21-02/22/01: Epoetin, Alfa

03/08-03/14/01: Octreotide Acetate

The History of Paul's Disease

One New Year's Eve, 1997, he started experiencing flu like symptoms and lower abdominal pain. He made an appointment to see his doctor. He was told that he might have a hernia and was scheduled for a pelvic ultrasound for the following week. However, Paul's condition worsened to the point where he had to be rushed to the emergency. By this time he was in a lot of pain. They ran tests at the hospital and the doctors still believed that they were dealing with a hernia. He returned home, but after a few hours he needed to return to the hospital. The pain in his abdomen increased and had become unbearable. After going back and forth from home to the emergency a few times he was finally admitted. By now his abdomen had become quite swollen. After a week in the hospital he was diagnosed with DSRCT, a rare form of cancer. he was then sent to City of Hope in Duarte.

Paul responded to the early chemotherapy treatments, but did not respond well to the later ones. Finally, the day came when he was told that they could not do much more for him. He was given 4 to 6 months to live by doctors at City of Hope, but they encouraged his parents to seek more medical opinions. A doctor at the Memorial Sloan-Kettering Hospital in New York City, believed that he could help Paul, but the cost was very prohibitive. His HMO didn't believe that anymore treatment would be helpful (based upon the prognosis that they received from City of Hope).

Paul has undergone various surgeries beginning with a 10 (ten) hour surgery last September 17th. During the surgery doctors removed a cancerous mass in Paul's pelvic area the size of a grapefruit. At one point in the surgery, doctors had to stop the operation due to the loss of vast amounts of blood. Doctors proceeded after the excessive bleeding was stopped.

After the surgery, Paul developed 3 (three) severe bacterial infections. One infection in paticular attacked his liver. This specific infection was prognosed as Jondis. Paul was kept in isolation for 5 weeks and given antibiotics until the infection cleared.

Doctors had difficulty reconnecting his intestines after surgery. Paul was connected to a Illiosomy bag for 3 and 1/2 months until another surgery can be scheduled to resolve the problem.

Paul dropped his weight from 160 lbs to 118 lbs after his surgery. He was put on a high calorie diet in hopes to gain weight.

Paul began Chemotherapy on November 24th. He is taking his Chemo orally, a 3 (three) week process in which he takes the Chemo twice a day (2 cc's mixed with juice). Paul commented on the Chemo saying that it tasted like hard alcohol. The taste doesn't bother Paul though considering that the oral Chemo has less side-effects and he exclaims happily, "I have hair now". The oral Chemo travels straight through the stomach where Paul's tumor presides rather than through his veins like the traditional Chemotherapy treatments.

 

http://www.paulsfightforlife.com    (12/04: This site was taken down.)

 

www.dsrct.com     desmoplastic small round cell tumor