For Release at 8am Pacific Time, Thursday, 15 April 1999
Patients Insist on More Research
This morning, the National Cancer Institute released data reflecting the results of Stage III clinical trials for high dose chemotherapy followed by peripheral blood progenitor cell rescue (frequently called stem cell rescue) for breast cancer. More than 1200 patients who have undergone this procedure believe that the data released today do not answer some fundamental questions. It is absolutely clear to us that further research is required. We await the availability of that additional research with high interest.
As patients who have undergone this procedure, we believe that four points should be considered with respect to the data released today.
First, several centers, particularly ones that have good or excellent current numbers but that carried out some of the early research, did not participate in the studies being reported today. Their medical staffs believed it would be unethical to randomize patients to the non-treatment arm of the study when their own data show that HDC/SCR works effectively for certain groups of patients.
Second, based on the results presented by previous studies, it is difficult to understand why a patient would voluntarily enter in the study arm that did not receive the treatment protocol. Thus, we question the randomization for these studies.
Third, in our view, the data reported today by the NCI are not mature enough to conclude that the HDC/SCR process is only equivalent to standard treatment. For example, the data are so new that median survival rates cannot be established.
Fourth, while many describe this procedure as too horrible deal with, our members view as remarkable the progess made since initial research into HDC/SCR began more than ten years ago. More than 1200 individuals who have undergone this procedure tell us that they would do it again, offered the same choices and opportunities presented to them before their own HDC/SCR procedure.
It is important to understand that a number of our members have received HDC/SCR for solid tumors, primarily breast cancer, as have other men and women. In our part of California, from Santa Maria to San Diego, over 700 men and men are living their day-to-day lives following successful treatment. It is clear that this procedure absolutely worked for them.
From research data published earlier, it is also clear that the procedure gets a longer disease-free survival for certain other patients. From more than 500 patients we talked to in this category, we learned that all of them had life experiences that would not have otherwise happened, even though their disease has recurred following their HDC/SCR treatment.
The greater issues, and the nugget of the problem suggested by the data released by the National Cancer Institute, seem to us to be how to identify:
We are You Are Not Alone, a high-dose chemotherapy support group. Our members have received high-dose chemotherapy (HDC) as a way to treat their solid tumors, primarily breast cancer. Nearly all of them have received stem cell rescue (SCR) as a way to restore their immune systems following the HDC. Collectively, this procedure is referred to as HDC/SCR.
This procedure, abbreviated as HDC/SCR, has been performed successfully for more than ten years at leading cancer centers in the US, including Duke Comprehensive Cancer Center, Durham, North Carolina, and the City of Hope Cancer Center, Duarte, California, with results that have been reported earlier in the medical journals.
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Notes to media:
Information about our organization can be found on our Web site at: http://www.yana.org/mission.htm
If you wish to speak with a member of our organization, we have two members who are prepared to speak to this issue. They can be contacted by email and are:
Dr. Virginia R. Hetrick, President
Dayna Franklin