Clinical Trials Will Cure Mesothelioma - A Personal Perspective

My name is Diane Ono. I have worked on mesothelioma cases since 1981, first as a paralegal and then as a lawyer, at the law firm of Galiher DeRobertis Ono.
My husband is Gary Galiher, the lead trial lawyer and senior partner at the firm. Gary and I have a very personal experience with cancer treatment and clinical trials. In 1997, sixteen years after I began working with mesothelioma clients, our daughter was diagnosed with acute lymphocytic leukemia at the age of four.
Like anyone diagnosed with cancer, I was shell shocked and devastated when the oncologist explained our daughter's diagnosis. It was hard to believe the words coming out of his mouth. After that initial shock, however, I decided that I would follow every step and every aspect of her treatment to ensure her remission and cure.
As you face your or your loved one's diagnosis of mesothelioma, I would like to share some important lessons our family learned from our daughter's diagnosis and the 2 1/2 years of treatment that followed.

Clinical Trials Are the Best Hope for a Mesothelioma Cure

Many call it a medical miracle that childhood leukemia, which was almost always fatal only 30 or 40 years ago, now has a cure rate of 85% or more. These phenomenal cure rates were accomplished through clinical trials.
Unlike adults, the majority of children with cancer participate in a clinical trial for their treatment. Today, participation in a clinical trial is the standard of care for a child with cancer. Among adult cancer patients, however, only 3% participate in clinical trials.
Curing childhood leukemia is the story of many committed scientists, including researchers in the laboratory together with physicians treating young patients, working collaboratively by involving the sick and dying children in clinical trials over many years. A cure for malignant mesothelioma will be found by patients like you participating in clinical trials.

You Must Be Your Own Best Advocate

The first lesson we learned was that you must be your own best advocate. Because clinical trials have certain criteria for participation, you need to ask your oncologist what is available. Be proactive.
Ask your doctor to explain to you which study or studies he thinks you might be able to qualify for. Ask which one he would recommend for you and why. If there is a cancer research center or a university medical school in your area, they may have information about what is available.

The Protocol and Roadmap

Participation in a clinical trial will mean that a medical professional, sometimes a nurse clinician, will explain to you the treatment protocol, as well as the Roadmap and all of the informed consent forms that require your signature. The Roadmap is a detailed schedule of when each drug must be administered, in what dosage and which tests and procedures must be done along the way.
All of the paperwork and very technical medical language may seem overwhelming. It is a good idea to have someone from your family there with you to listen and ask questions as well. If you do not understand something, do not be afraid to ask.
Your physician or the nurse clinician will be able to explain things in lay terms that will be easier to understand. This is about you and your loved ones. You want to take every possible measure to fight your cancer, so do not be afraid to ask that things be repeated or re-explained. There is no such thing as a dumb question.
Have a way to organize all of the papers being given to you. I used a three ring binder with dividers. I marked important dates such as the date the treatment was actually administered on my daughter's Roadmap. Sometimes treatment has to be postponed due to infection or other problems. By staying organized, you will know that you received all of the treatment set forth for your study.

Higher Standard of Care

Participating in a clinical trial will mean that you will have a higher quality standard of care than the average patient. This is because the study you are on will require very close monitoring of your condition. You will have certain tests such as blood tests, x-rays or other procedures that must be administered according to schedule.
Your doctor who is participating with you in the study will be providing information to the principal investigator of the study or somehow forwarding your data so that it can be compared with other study participants. You are essentially taking part in a well-controlled human experiment.
You may wonder why you could not just get the medications being used in a study without the bother of the paperwork and formality of actually participating in a trial.
In fact, many doctors around the country may be administering the very same medications being studied and some are probably experiencing certain successes in helping their patients. However, if everyone in their own locality acts separately, there is no way for doctors to share their experiences and analyze the scientific data. Unless this data is collected through a clinical trial, researchers will be unable to identify the most promising treatments, and the cure for mesothelioma will be even further away in the future.
Participation in a clinical trial may not only help to extend your life and boost your quality of life, but will also help medical research to find the best possible treatment and eventual cure for this devastating disease.

A Fighting Spirit and Hope Are Strong Medicine

Lastly (and this is not medical or legal advice) have a fighting spirit! Having hope and the will to make every day count helps you maintain a healthy, strong mind to face adverse circumstances.
I encourage you to ask your doctor today to tell you about the clinical trials available to you. Our daughter is now 17 years old and is a senior in high school. I am still helping mesothelioma clients, and I hope our personal perspective will assist you as you go forward in your treatment.