Cancer Monthly, a Unique Resource Woven from Tragedy (original) (raw)
Cancer Monthly, a Unique Resource Woven from Tragedy
� Michael Horwin 2005
In August 1998, two-year-old Alexander Horwin was diagnosed with medulloblastoma, a highly malignant brain tumor. Surgeons removed the entire tumor and in October 1998, Alexander was administered what the Horwins were told was �state-of-the-art� chemotherapy (1). Three months after starting this 12-month protocol and while he was receiving the drugs, Alexander died of 30 tumors that spread throughout his brain and spine.
The Horwins wanted to understand why their son died while receiving what they were told was the best treatment available, a therapy that would certainly prolong Alexander�s life if not cure him. Michael Horwin, now an attorney and his wife Raphaele, now a forensic scientist, spent hundreds of hours in medical libraries. In the pages of the medical journals, they found one shocking revelation after another.
First, they discovered that none of the drugs administered to Alexander were FDA approved for children. (2) Next, they found out that none of the drugs were FDA approved for the treatment of brain tumors in any person (2).
In addition, they found out that one of the four drugs administered to Alexander (cyclophosphamide) was listed as a known human carcinogen and another (cisplatin) was listed as a probable human carcinogen(3) � they actually caused cancer.
And finally, and most shocking of all they discovered that the same four drugs had been administered to children the same age as Alexander with exactly the same brain tumor as Alexander and that the treatments had been an utter failure (4) causing one hospital to actually terminate the therapy(5). This had happened years before Alexander was even diagnosed.
These discoveries devastated the Horwins. In fact, the FDA had told this family that they could not access a non-toxic therapy administered by a medical doctor because this doctor�s therapy was not FDA-approved (6). The FDA, however, failed to tell the family that the chemotherapy this agency required be administered first was also notapproved for pediatric brain cancer. These findings led the Horwins to be invited to testify in front of the United States Congress on June 7, 2000 before the Committee on Government Reform(7). There, they highlighted: 1) How the FDA has broken every moral, ethical and legal code by not allowing a parent to make treatment decisions in an attempt to save their child�s life; 2) How patients are not given the basic facts about the toxicity and lack of efficacy of orthodox cancer therapies. Seewww.ouralexander.org
Clinical data from all New Drug Applications (NDA�s) are submitted to the FDA, but because they are considered proprietary, they are never disclosed unless the drug is approved. In the Horwin�s case there was no evidence that the pharmaceutical companies were even seeking FDA approval for the treatment of pediatric brain tumors for the four drugs administered to Alexander.
The complete lack of any credible patient oriented information about the results of mainstream cancer therapies led the Horwins to join with others who had lost loved ones to cancer to build an Internet cancer resource called Cancer Monthly. www.cancermonthly.com Citing the medical/scientific literature, Cancer Monthly reports in lay terms how individual cancer therapies performed on other patients.
�For the first time, cancer patients can access many of the same facts that their doctors get to see. Cancer Monthly makes it easy for patients to compare cancer treatments by survival rate, side effects, type of therapy, and hospital, and discover exactly how other patients with the exact same cancer did on these therapies. They can also find out if the drug their doctor is recommending is FDA approved for that use and whether the clinical studies that prompted the treatment were paid for by the drug companies whose drugs are involved in the therapy,� explained Michael Horwin.
The Horwins along with other parents who had lost children to cancer, all unpaid volunteers, invested their own time and money to create Cancer Monthly. Currently, the database, which is updated monthly with newly published clinical data, contains the results of nearly 500 different cancer treatments for brain, breast, colo-rectal, kidney, liver, lung, mesothelioma, and prostate cancer.
�Cancer Monthly empowers patients. Mainstream oncology and the pharmaceutical industry often create patient disorientation and confusion. First, patients are rushed into making treatment decisions. Next, they are not even presented with the basic facts such as how long other patients survived on a particular therapy. Now, thanks to Cancer Monthly, they can find out what has been published about a particular treatment. If such a resource existed when Alexander was diagnosed, we would never have permitted him to be administered that particular protocol. We would have spared him this toxic and ineffective treatment and months of agony despite the FDA�s position,� Michael Horwin said.
Cancer Monthly is accessible free of charge to all cancer patients and their families atwww.cancermonthly.com
For more information see: Posting Straight Facts on Cancer, Wired News, January 3, 2005: http://www.wired.com/news/medtech/0,1286,66130,00.html?tw=wn_tophead_1
For more information on Alexander Horwin seewww.ouralexander.org
Footnotes:
(1) The protocol was entitled CCG 9921 which consisted of the intravenous administration of four chemotherapy drugs: vincristine, cisplatin, cyclophosphamide (also called cytoxan), and VP16 (also called etoposide).
(2) See FDA
(3) See The International Agency for Research on Cancer (IARC)
(4) See for example, ��Responses were short lived, with two patients relapsing while still receiving chemotherapy. Three of four very young children relapsed within 7 months of completing chemotherapy��
- Gaze MN, Smith DB, Rampling RP, Simpson E, Barrett A. Combination chemotherapy for primitive neuroectodermal and other malignant brain tumours. Clin Oncol (R Coll Radiol) 1994; 6(2): 110-5
(5) �Thirteen young patients (under 36 months) with medulloblastoma were treated with preirradiation multiagent chemotherapy�Two patients completed the scheduled chemotherapy with residual disease and received delayed radiation therapy. The remaining eleven patients had either local or leptomeningeal progression during chemotherapy (median time to progression, 5 months)�Progressive disease required early termination of chemotherapy in (these) eleven cases �� (emphasis added)
- Gajjar A, Mulhern RK, Heideman RL, Sanford RA, Douglass EC, Kovnar EH, Langston JA, JJ Jenkins, Kun LE. Medulloblastoma in very young children: Outcome of definite craniospinal irradiation following incomplete response to chemotherapy. J Clin Oncol 1994 June; 12(6): 1212-1216
(6) Stanislaw Burzynski, M.D. The treatment was antineoplastons.
(7)Hearings Before The Committee on Government Reform, House of Representatives, 106thCongress, Cancer Care for the New Millennium, Integrative Oncology
Contact: Michael Horwin, MA, JD