On September 11, 2001 terrorists assaulted the heart and soul of the United States sending not only citizens of this country but people all around the world into a state of shock and despair.
In the past year, 1.268 million people in the United States were attacked by another terrorist - cancer. The same feelings of shock and despair felt by the victims of the World Trade Center and Pentagon attacks as well as the nation as a whole are experienced daily by cancer victims and their families as it bludgeons into the very heart and soul of their being. As the lives of all Americans were changed by the events of September 11, so are the lives of the victims and families of this most malevolent of diseases when they are struck.
On December 8, 2000, nine months before our nation was hit and put to the ultimate test, our family was delivered the devastating blow of being told that my husband had terminal cancer. The news struck at the very heart and soul of our being. We had two young sons, our own small business which had recently been adversely affected by dotcom and technology company failures, as well as our being highly leveraged financially at the time.
When someone is told that they have cancer, the blow is sudden and the impact devastating. The emotional turmoil that follows is a living hell, not only affecting the patient themselves but their entire family.
We were told there was no hope; no treatments nor drugs and that the tumor, which had metasticized to the lungs, was inoperable. In other words, "go away and wait to die". Ultimately, we were able to find an oncologist who at least was willing to work with us - to restore hope - but who did not have immediate answers but at least encouraged us to look into the possibility of clinical trials - saying, "cures are just around the corner" and "you need to look at the most innovative and promising trials, as they could be the next major break through".
With this in mind, and having become a nutritional expert having read every published paper on the various foods that either could stimulate or stem cancer cell growth, as well as the role of vitamins and herbs in the treatment of cancer, we turned to the Internet to learn as much as I could about clinical trials.
This project turned into a full time job. We found through our experience that information is not easily available from one source. The National Cancer Institute only lists trials which they sponsor - there were no new drug break throughs for my husband's cancer - renal cell carcinoma. It then became necessary to start looking at each of the major cancer trial sites individually - M.D. Anderson, Sloan Kettering, Dana Farber - but still nothing. We researched papers that had been published from various oncology conferences to see if anything had been presented on renal cell and then try to track down the institution which the "presenting doctor" was associated with. We registered with dozens of other sites that purport to provide clinical trial information but to this day we have never received information on half the trials that we know were available through our own detailed and laborious searches.
Ultimately, we were able to identify the particular trial which my husband was accepted on last August through a paper that was presented at the Annual Conference of Oncologists in San Francisco in May 2001. The doctor who presented the paper heads up the Cancer Research Treatment Center which is part of the Univesity of Texas in San Antonio. The Center is one of the leading pharmaceutical company trial research facilities and is currently testing a number of very promising drugs for the treatment of cancer - primarily monoclonal inhibitors and receptors which stem cell growth in various ways.
However, for the average patient, identifying not only the right trial, but trials in general is complex, time-consuming and highly demoralizing.
Our own personal experiences highlighted the dire need for a service that can provide not only as much information as possible to patients who find themselves where we did in December 2000 so that they can make informed decisions to help them in their own personal battles, but more importantly provide hope. Of the 1.268 million newly diagnosed cases of cancer each year, only three percent every particpate in a clinical trial - a trial which may provide the only hope open to them in their battle to fight this devastating disease. With hope restored, the mind in and of itself is a crucial weapon in the ability to wage the war at hand. Armed with hope, the knowledge that there are new treatments and possibilities available, and tangible help that addresses the financial drains of entering a trial presents, patients will be better prepared and able to fight the silent terrorist of cancer.
My husband, David Turnbull, fought a long and valiant fight. However, he was not going to accept defeat easily and was determined not to succumb to the silent terrorist that was growing within. With true grit and determination he fought back, his courage never waning. The battle was not easy but he was resolute not to give in. The knowledge and insight we gained each day helped us stay the course and not lose heart as we learned of new drugs and therapies that offered hope for a cure.
However, the resources to obtain information and the ability to participate in a clinical trial, which for many is the only hope left, were sadly lacking - a sentiment echoed by not only all the cancer patients we have come in contact with but by leading cancer specialists and some of the top investigational centers in the country. Therefore, encouraged and supported by his doctors, Lauer here in Atlanta and Drs. De Bono and Rowinksy at the Cancer Therapy and Research Center in San Antonio, through the experience and knowledge we had accumulated, we felt compelled to try and help others whose worlds, like ours, have been shattered when struck by this devastating disease.
David's greatest wish, and the project closest to his heart these last few months, has been the creation of The Angels of Hope Cancer Information Resource Foundation - he felt he had been amongst the fortunate to have not only found and been accepted on a clinical trial, but to have benefited greatly from it and for this reason he wished to offer similar hope and help to others.
Unfortunately, David lost his fight on August 18, 2002 but his dream will be realized through the Foundation which he worked so hard to try and establish before his death. The Angels of Hope Cancer Information Resource Foundation was established in his name and in his memory and from small seeds it will grow and flourish to give hope and help to those who face their own battle with the silent terrorist that can strike any one of us without warning. David's vision and the personal courage he exhibited in his own fight will hopefully be able to help countless numbers of other victims along the way.
Indra K. Turnbull