Copyright © 1999, Richard Berman
I am a true survivor of desmoplastic small round cell tumor (DSRCT), an extremely rare disease for which there is a KNOWN EFFECTIVEPROTOCOL, which I was lucky enough to undergo. I am healthy, cancer free, and working full time five months after my protocol ended. Myprotocol was developed by the pediatric oncology department at Sloan Kettering, and appears in the medical literature. It is also being used by at Children's Hospital inSeattle. The physicians at Children's Hospital in Seattle consulted with Fred Hutchinson Cancer Research Center, where I was treated.
I was diagnosed at 34 with widely metastatic DSRCT. I had a nine-inch diameter primary tumor in the pelvic cul de sac, and numerous thoracicmetastatic tumors. This was first diagnosed as carcinoma of unknown origin by the pathologists at Oregon Health Science University. Myoncologist thought it might be extragonadal testicular cancer. I went for a second opinion to the pelvic tumor specialists at MD Anderson inHouston. They diagnosed DSCRT, but were unaware of any effective treatment.
My local oncologist researched the literature on DSCRT and found an article from Sloan Kettering, reporting good results using their protocol.Not wanting to travel to New York for treatment, I consulted with Fred Hutch to see if they could do the protocol, which required stem cellrescue. They made an appointment with a doctor who altered the protocol for me slightly, given that I was 34, and they had only used theprotocol on children.
I had been given two rounds of a chemotherapy regimine known as "BEP", bleomycin, etoposide, cisplatinum, in Medford, and they had shrunkthe tumors markedly. At Fred Hutch I received four rounds of "VACIME," vincristine, Adriamycin, Cytoxan, Ifosfamide, mesna and etoposide,at very high doses. I had to be hospitalized much of the time and experienced extreme mucositis for each round, which prevented me from eating at all, andrequired hospitalization for pain relief. I had a Hickman catheter inserted before the treatment began and required TPN for much of the time. My stem cells were harvested after the second round and Ireceived stem cell boosters after rounds 3 and 4.
The treatment eradicated all metastatic tumors and shrunk the primary tumor to an inch and a half.
I then had surgery at University of Washington. They removed the entire tumor and found clean margins on all sides except my bladder, whichshowed microscopic infiltration. Based on my prior instructions, they did not resect the bladder.
After recovering from surgery, I underwent Fred Hutch's "standard" autologous stem cell transplant, with Busulphan, thiotepa, and melphalan.I was hospitalized for one month and underwent minor complications which were all resolved.
Two months after my transplant I began a six-week course of localized radiation at the original site of the primary tumor. This was extremelyeasy compared to the other treatments.
My experience in meeting many cancer patients has been that the ones who go with the most aggressive treatment the soonest tend to do thebest, while the ones who only resort to aggressive therapy after less aggressive therapy has failed have tended to do the worst.
I recommend highly the doctors at Seattle Children's and at Fred Hutch, and especially the support staff at Fred Hutch who are outstandinglycapable and extremely supportive. I, my wife and my two little girls look forward to a long life together.