When you receive a dreaded cancer diagnosis, you are bombarded with choices. What to do? Where to go? Treatment options? It can be mind boggling! For some of us, one of those choices can be whether or not to participate in a clinical trial study.
Choosing to Be Part of a Clinical Trial
When I was diagnosed with breast cancer, I was asked, and my answer was a resounding YES! Clinical trials aren’t for everyone, and that’s okay. I’ve always been a firm believer in research, so for me it was an easy decision. I weighed all the facts, talked it over with my doctor, my family, and anyone else that would listen. I was impressed by the close team I would be working with and the possibility I would in some way maybe, just maybe, help someone along the way. The cancer trial I agreed to was a dosage study. I would be given higher than normal amounts of chemo. The big question to be answered: “was more really better?” Or did my mom have it right when she said too much of a good thing isn’t always good?
Armed with my “can-do” attitude, I marched into the chemo room ready to advance medicine with my eager participation in this study. Wow! I was literally knocked on my butt! My bravado took a huge blow! But I had guessed, no I KNEW, this wasn’t going to be a walk in the park. For each treatment I walked through those doors knowing what was in store for me, but I never backed down. The thought of quitting this study literally never entered my mind. It was important for me to finish what I had started. It was important for me to help. I like to think I was thinking clearly at the time, but who knows. Maybe I was in “cancer shock” mode and ready to fight the world!
Pros and Cons of Drug Trials for Cancer Patients
One positive thing I noticed about my study was how closely I was monitored. I received daily phone calls checking to see how I was doing. A lot of time was spent going over everything I was experiencing. Nausea, fatigue, etc. Everything had to be documented. It was someone to talk to, answer questions, and basically just reassure me what was normal.
One big negative was that we discovered higher doses of chemo weren’t always better. I had a few complications requiring outpatient and eventually inpatient IV’s for fluids. I can’t compare it with a normal treatment plan because this was my first foray into the chemo room. My very wise oncologist pulled me off the study after my fourth treatment. My counts had bottomed out and she did not want me receiving more chemo. I was two treatments away from finishing what I had started. I literally cried when I was pulled from the study. I’m not a quitter! I wanted to help, but I trusted my oncologist and walked away from treatment. As it turned out it was years later before my white blood cell count even returned to a low normal.
Looking Back with No Regrets
Once I was dropped from the trial study, I never heard from the research group again. I joined the land of “average people going through treatment.” That was also a negative for me. I missed the daily “how are you doing” phone calls.
Was the trial study I participated in a failure? Absolutely not! I like to believe that they learned what a body can handle and what is too much. Maybe others were able to finish this study, I don’t know.
Am I sorry I participated? No I am not! Clinical studies are one way to advance treatment options. Like I said, they are definitely not for everyone and are used on a volunteer basis. Sometimes other drugs have run their course and a research study is highly recommended. In this case it should be thoroughly discussed with your health care team.
My Advice to Others Considering a Cancer Clinical Trial
If you qualify for a study and your doctor offers one to you, ask as many questions as you can think of. Then go home and think of some more. Do your homework. Talk to your family. Find out as much as you can about what drugs you’ll be taking and what makes this study different than a normal protocol. Ask your doctor if he would recommend this study to a family member. If so, why? Ask what kind of follow-up you’ll receive and more importantly, can you leave the study at any time and return to a normal treatment schedule.
If you decide to do a clinical trial, have realistic expectations. This is a study, it is not tried and true. That’s why they need to research it. It may be the next best thing, or it may not be everything they had hoped for. A lot of time and money has gone into the trial before it is even offered to you. If you feel that you may want to give it a try, go for it. If not, that’s perfectly okay.
My advice… do what’s best for YOU! I did, and after twenty years, I don’t look back!