Have you ever considered participating in a clinical trial? If you haven’t, you are in the majority. In fact, according to Patient Advocate Foundation,“ less than 5 percent of adults diagnosed with cancer each year will get treated through enrollment in a clinical trial.”

I find this stat extremely sad for two reasons. The first is that without participants clinical trials cannot be conducted. If treatments cannot be tested in trials, they will never be approved by the FDA, so they will not be available to cancer patients. A study by Fred Hutchinson Cancer Research Center and the University of Washington found that nearly 20 percent of publicly funded clinical trials fail due to lack of participation.

The second reason I hate to hear that few people participate in clinical trials is because they may be foregoing a life-saving treatment. Especially today, researchers are testing many very promising treatments. One of those treatments may be just the one that will work for you or your loved one!

My Story

I am a big proponent of clinical trials. I believe in them. I always have. But what I didn’t really realize until I got into a trial myself is that they might save your life.

In July 2013, I was told that my stage IV lung cancer was progressing and that I basically had two choices. I could either continue with traditional chemo, this time a chemo that was less effective and made patients sicker than what I had already received, or I could go into a clinical trial.

I didn’t think long about that choice, because I had had enough of being sick from traditional chemo. I thought I was about to die anyway, so I wanted to go into a clinical trial. My reasoning was completely altruistic. I thought that my decision to become “a guinea pig” was going to help future generations. I never, ever dreamed that I would benefit personally.

Boy, was I wrong!!! My tumors responded immediately to the trial drug. And I had absolutely no reaction to the treatment. Gone were the days of vomiting and being so fatigued that I could just barely walk 10 feet. It was a win-win situation. I felt great. And my tumors were completely stable.

I didn’t know it at the time, but I had gotten into a trial for nivolumab, aka Opdivo. I remain in the trial today—more than three years later. The drug has now been approved by the FDA to treat various cancers, including non-small cell lung cancer like I have. You have probably seen television commercials or print advertisements for it.

For me, it has been a miracle drug. Even after 78 infusions, I have suffered very few side effects. The worst side effect has been that my thyroid quit working properly. I just take a little pill every day to control that. The best side effect is that my tumors have remained completely stable. My radiologist often refers to them as scars, not active tumors

Participating in the clinical trial gave my life back to me. I don’t so much have the “new normal” that so many cancer patients reference as I have my old, pre-cancer normal back.

Some Surprising Facts About Clinical Trials

Obviously, not everyone will respond the same as I did to their trial drug. Not everyone responds to traditional treatments the same, either. But, here’s the deal. If, at any time and for any reason, you decide you no longer want to participate in a trial, you tell your doctor that you don’t want to continue. You will be dropped from the trial immediately and without repercussions. Dropping out of one trial will not prevent you from getting into another trial.

If you go into a clinical trial that is testing cancer treatments, you will receive some kind of treatment. You won’t be given a placebo and left to die with no treatment at all. You may not get the test drug, but you will get some treatment. In my trial, I would have either gotten the nivolumab or docetaxel (Taxotere), a previously FDA-approved cancer treatment.

You receive a lot of care when you are in a clinical trial. I have a researcher, a nurse practitioner and my oncologist that I see every two weeks. Extensive blood tests are performed at every visit. For two years, I had CT scans every 6 weeks to ensure that my tumors were still responding to the treatment. I now have scans every three months

Since you are monitored very closely while you are in the trial, your oncologist will know very quickly if it appears the drug is not working for you. If you are not responding or develop side effects that could be life altering, you will be immediately removed from that trial.

You will generally save some money by participating in a clinical trial. In my case, the drug company pays for the cost of the trial drug. My insurance company has to pay for all care that would have been given whether or not I was in the trial—labs, scans, doctor visits, etc.—but they do not get charged for the expensive drug treatment. In addition, since my thyroid was affected by the trial drug, the trial pays for regular thyroid tests.

Every trial is a little different as to what is paid and what is not. I am fortunate that I do not have to travel outside of my city for treatment. However, some trials will pay for transportation and may even give patients a stipend for participating.

What to Expect If You Join a Clinical Trial

When you begin to look at clinical trials, you will suddenly find yourself staring at a mountain of paperwork! Most of it is written in such a way that you will be able to understand it without a problem.

It is very important to read all of the paperwork. It is the contract you are signing with the trial investigators.

Before I signed on the dotted line, I had many questions that I asked my researcher. She answered them to my satisfaction, and I committed to the study.

A small caveat that I should include here is that I have previously described a clinical trial that tests a specific drug. There are many kinds of clinical trials. I recently joined another trial that simply allows my research hospital to draw vials of my blood to go into their “Tissue Resource.” While there is no personal benefit to me to participate in this trial, researchers will use the samples to improve their understanding and treatment of disease. I always agree to this kind of study because I am very interested in helping doctors and researchers in any way I can so that they can find new ways of treating patients.

Finding Clinical Trials

If I wanted to get into a clinical trial, I would first approach my oncologist to see if he or she knows of an appropriate trial. It may be that you would have to change doctors if you join a trial. I changed medical facilities and oncologists when I entered my trial. NCI-designated facilities may be more likely to have studies available.

If you want to research available trials yourself (click on this link to use our self-serve Dory tool on Patient Power's website), the granddaddy of all sites for finding clinical trials is clinicaltrials.gov. As of the date that this was written, the site included information about 226,788 studies with locations all over the United States and in 191 countries.

Clinicaltrials.gov allows you to enter search terms so that you will see only those trials that are relevant to you. I entered “lung cancer” and “Dallas” and marked the box that allows me to see only those trials that are actively recruiting. Sixty-six studies met my criteria.

Researchmatch.org is an interesting site that matches patients to trials. You complete information about yourself and your condition and the site will find researchers who may be looking for someone just like you! This site is funded in part by the National Institutes of Health (NIH) Clinical and Translational Science Award (CTSA) program. [Note: Patient Power’s partner, SparkCures, has created a HIPAA-compliant clinical trial search tool for Multiple Myeloma patients. Click here for more information.]

Advocacy groups for certain conditions (breast cancer, lung cancer, heart disease, etc.) often maintain clinical trial databases. It is not uncommon for the information populating these databases to come from one of the government-run databases like clinicaltrials.gov. Please be aware that their information may not be as updated as the government sites. And, please, never pay for information about clinical trials. It is freely available without fee.

I leave you with this statement: Join a clinical trial! Who knows? The life you save may be your own!! (That’s what happened to me!)

Hating cancer…loving life,

Donna Fernandez

Owner of blogspot, MyBattleWithLungCancer