The I-FIND Program
An important part of our mission is to provide you unbiased, scientifically rigorous, comprehensive and up-to-date information regarding all treatment options for your particular cancer.
Based on your answers to a short questionnaire regarding your diagnosis and current treatments, we will provide you a roadmap of your treatment options, which will fall into three categories:
- Standard of care
- Clinical trials
- Scientifically promising options
Standard of care: Your physician is the best source for this information. We provide this information here for the sake of completeness.
Clinical Trials: Clinical trials offer you promising treatments which are not yet proven to work for your situation. Many times these are new drugs not yet available to the general public and you have to enroll in a trial in order to receive the drug. Typically, your physician will recommend you enroll in a ‘clinical trial’ if standard treatments have not worked for you. Also, when standard therapies are not particularly effective, you may wish to ask your physician about enrolling in trials rather than accepting standard treatment.
GlobalCures will offer you a list of current clinical trials that offer you the best chance of success. If you are eligible and geographically able to enroll in a clinical trial, we strongly recommend you do so.
Scientifically promising treatment options: Many patients will not be able to enroll in a clinical trial due to distance or ineligibility for the trial. Such individuals still have options. In fact, many times a physician can embark on a treatment plan similar to that being tested in a clinical trial listed above, provided that the drugs are FDA approved and readily available. There are also promising case reports and other preclinical data that might point to a particular combination. We call these 'promising therapies'. These options will be evaluated by several criteria: scientific promise, anticipated side-effect profile, cost of therapy, ease of administration, and requirement for physician prescriptions.
We will provide you a list of such promising therapies along with supporting scientific data.
In an ideal world, the treatments listed in this section are ready for proper clinical trials. But because many of the drugs are already generic, pharmaceutical companies cannot recover the costs of the trial even if the trial is successful. For this reason, these therapies tend to remain 'unproven'. It is important to understand that unproven does not mean the treatment will not work. It just means we don’t know. So if you do not have time to wait for the trials and if no other options are available, should you try such a treatment?
Only you can answer this question along with the help of your family and physician. If you decide to embark on this path, we invite you to join us in a partnership of discovery: I-SHARE
Joe’s Story: Joe was diagnosed with glioblastoma in 2005 and when standard treatments failed to stop the growth of his tumor, Joe asked his physician to recommend a clinical trial. His Boston based doctor recommended a phase I trial that was available at a prestigious hospital. Having done his homework, Joe knew that the main goal of a phase I trial is to find the ‘maximum tolerated dose’ of a new drug or a combination. He realized that the chances of benefiting from such a trial were small.
Joe was not quite ready to throw in the towel and wanted to find a therapy with higher probability of success. His searches on the Internet for glioblastoma treatments led him to a paper describing a phase II trial with a non-toxic anti-malarial drug (chloroquine) which appeared to double the survival time in glioblastoma cases. Unfortunately the trial had only enrolled 30 patients and since the ‘p value’ of the result was 0.14 (there was a 1 in 7 chance that the result was by chance!) and since the drug was generic and cheap, no drug company had spent its money to investigate it further. Nevertheless, Joe felt that the chance of this drug working was better than the phase I trial he was offered.
Since there was no clinical trial in glioblastoma that was testing chloroquine, Joe tried to convince his oncologist to add the drug to his treatment regimen. However, the oncologist had never heard of this trial and was reluctant to prescribe the chloroquine since he had no experience with it nor did he know what side effects to expect.
Joe learned some important lessons during his quest to obtain a promising therapy:
- There are hundreds of papers published every year and physicians find it hard to keep up with ever changing data. Unless rigorous clinical trials are conducted by pharmaceutical companies and the proven therapies are 'marketed' to physicians, many promising therapies remain unknown to doctors in charge of your health.
- There are inherent ‘conflict of interests’ in the system. Academic physicians with the most experience in testing hitherto untried therapies are under considerable pressure to recommend trials that are available at their institution, even though these may not offer the best chance of success for you. Physicians will correctly argue that until a trial is proven to work, they do not have a means to evaluate one trial versus another and so they recommend the trials with which they have the most familiarity.
- It is impossible for patients and physicians to evaluate the existing data in an objective way in order to select the best therapy(either a clinical trial or off-label use of promising available drugs). There are currently over 400 glioblastoma trials listed on clinicaltrials.gov. Selecting the one with the best chance of success for an individual is an overwhelming task. In addition, the decision may need to take into account not only ‘scientific promise’ but also the patient's ability to tolerate the expected side effects.
- Physicians are justifiably concerned about not knowing what to expect from the off-label treatments. They have no experience and no peer group to go to for help. They are on their own, in unchartered territory, without clinical trial data. In addition, they are under constant threat of law suits, even though the law allows physicians to use drugs off label provided standard options are exhausted and there is some evidence that the drugs may help.
Joe heard about GlobalCures from one of our patient advocates. GlobalCures helped Joe critically evaluate the scientific data (Joe was not a scientist) and select three or four therapies he could try on his own without a doctor’s prescription. In addition, GlobalCures provided him with key scientific papers to take to his doctor in order to convince him to prescribe chloroquine. Once the doctor saw the papers, he was willing to prescribe this drug. Joe did well for a while, but the cancer came back. In order to be eligible for a new clinical trial that had just become available, Joe had to stop all other treatments for four weeks. Unfortunately, he died three weeks later - 32 months after his diagnosis - before he could even begin the new treatment. He had survived over twice as long as the average patient with glioblastoma.
Joe left a lasting legacy for patients like him who are looking for promising therapies and a ray of hope. During his last two years, he started an ‘Endure to Conquer 5K Race/Walk’ to raise money for cancer research. He asked his family and colleagues to donate all the proceeds of this annual event to GlobalCures. He also inspired his colleagues to hold an annual raffle to help GlobalCures.
GlobalCures is funded entirely by efforts of patients like Joe. If you would like information on organizing an event in your town or city, Click Here.