By: Jan Hasak, Paradise, CA
How key this word becomes in the context of clinical trials. Last April I had the honor and privilege of being asked to speak on a patient panel during Clinical Trial Awareness Week at a major hospital in Palo Alto, CA. The request came from my clinical trial coordinator, who singled me out as an ideal candidate for inspiring hope in those who needed to hear a message from one who had been through the Stage IV trenches of a breast cancer diagnosis.
This speaking engagement presented a unique opportunity for me to address how clinical trials are changing the face of medicine for good.
All the prescribed drugs we see today, whether compounded into pills or made into chemo drugs to be injected or infused, have undergone some form of clinical testing. Brave are the patients who take these drugs, whether at a safety stage, an efficacy stage, or a stage that compares the drug with others already on the market.
On this patient panel I shared with the audience of about 100 nurses, clinical coordinators, patients, doctors, and caregivers my experience of being on two targeted antibody drugs for a year and a half. I described the blood draws, doctor exams, infusion treatment area, as well as the regular echocardiograms and bone and CT scans to which I was subjected on a regular basis as part of the clinical protocol.
I ensured the audience that I did this willingly and could drop out at any time. But why would I opt out if the drug regimen is otherwise working? The drug sponsor agreed to provide two highly state-of-the-art targeted antibody drugs, hugely expensive on the market, for free. All I needed to do was show up, although that did require a four hour one-way trip and overnight stays. It was still worth it to extend life and provide a better quality of life for as long as the drugs kept my cancer at bay.
Other patients on the panel included those with leukemia, lymphoma, melanoma, brain, and testicular cancer. This trial did not cover lymphedema, but I had an opportunity to briefly present my own lymphedema. In the time I had to provide my perspective at the podium—a short ten minutes—I was able at least to mention my struggle with lymphedema.
If you are at all interested in participating in a trial of this nature, you should always check to see what clinical trials are available in your area. There may just be one that studies lymphedema or another condition with which you are struggling, in which you can participate and advance the base of knowledge already developed. The U.S. National Institutes of Health has set up a comprehensive registry and results database of all kinds of publicly and privately funded trials at http://clinicaltrials.gov. Another site to consider is www.clinicaltrials.com, although it is not sponsored by the US government. Readers in other countries can use search engines to find reliable sites that might provide them with valid opportunities to participate.
Besides the obvious benefit I received from my own treatment in this trial, one of my biggest reasons for participating was to help others who are in earlier stages of the disease to see what can be learned about the side effects of these drugs so that they can be minimized or tolerated better. Researchers also can access my genetic makeup (from tissue samples taken) to see why I responded one way and another person in the same trial responded differently. These observations can be used to ease the way for others down the pike.
My dream is that, through all the clinical trial procedures that rock my boat, I can inspire, assure, and educate others who are newly diagnosed with metastatic cancer to navigate the rocky waters of a Stage IV diagnosis. Lymphedema presents challenges of a different, but yet not so different nature.
Since it was still National Poetry Month, I concluded my talk with a lymphedema-related poem called “Woodland Lymph” that I wrote:
Swelling streams from grottoes cool
Woodland lymph draws near
Bathing beauty moves with ease
Down her pathways clear
Woodland lymph a welcome sight
Gliding down fast streams
Groves and rivers catch my eye
Wondrous are my dreams