Why I Chose To Participate In A cancer Clinical Trial

Let me start by saying I am not a medical professional.  I am a patient, and these are my opinions, not the opinions of anyone mentioned in this article.  Speaking to your doctor about your cancer clinical trial options is the first thing you should do.

Learning about and participating in a clinical trial can have its challenges but it has proven lifesaving for me. cancer treatments are rapidly changing with advances in research. It gives me hope to know that there are scientists working to develop new options to fight cancer.

 

Considerations for Participating In A Clinical Trial

Participating in a trial requires thought, research, and conversations with your doctor.  I chose to participate in trials for a few reasons.  The first was that my doctor agreed that it was worth me exploring based on the survival rate of my diagnosis. The second was that the science made sense to me.

 

Not Your Mom’s cancer:

Our cancers may be the same types of cancers that our parents and grandparents were diagnosed with but the way we approach treatment options is very different. The information we have literally at our fingertips increases every day.

When I was in my teens my mother had a “lump” removed from her breast.  I remember her telling me and the only thing I knew about moms having lumps removed was from a friend whose mom had breast cancer. Today I could look for information online that would help me understand and eliminate some of the worry.  Some.  The options for cancer treatments aren’t one-dimensional as they once were. Science has taught us that all cancers aren’t the same and that they aren’t treated the same.

 

Google Your Diagnosis?

Having said that, Googling a diagnosis isn’t something I recommend you use as gospel. You will find one of two things based on what you are looking for.  You will either find out that you’re going to live or you’re going to die.  If you want to find out if you could die, you will.  If you want to find out that you could live, you will. My point is that there is information available and knowledge truly is power.  If you have the power to find information about your cancer and potential treatment options, you can be better equipped to go to battle.

 

The following link will take you to the National Institute of Health’s (NIH) site where you will find a glossary of common terms associated with clinical trials. These terms will be helpful for you to understand as you start reading about potential trials and talking to your doctor.  So much information can be overwhelming so there’s no need to study the list but use it as a resource as you start to uncover information.

 

I have participated in three different clinical trials. I will be sharing detailed information about my experience as a patient on each trial. My first trial was in 2011 and when I first learned about trials.  It was a Phase 2 trial that did not advance to Phase 3. If you’re interested in the clinical information regarding the study, it can be found here. If you look at the study results for clinical information and you see that 1 person “completed” the study, which means that one person went through the study and had a complete response, their cancer went away.  That one person was me in this case.

 

How To Find Out About A cancer Clinical Trial

People often ask how I knew about the trial and getting onto the trial.  Trials are always on my radar now because of the first one I was on that truly saved my life.  In past posts, I’ve mentioned that response/survival rates for my diagnosis at the time were 15% with traditional chemo and the trial I was presented with was seeing response rates closer to 31%. I really think that additional 16% did the trick for making me consider a trial.

If you are wondering about available trials, once again, ask your doctor.  They will be able to direct you to what’s available.  If they aren’t aware of any at their facility, there are other ways to find trials.  Clinicaltrials.gov is a searchable site that you can find more than you can comprehend.  It’s hard to know which cancer clinical trial could be a potential match for you because of the specifics about your cancer.  I didn’t know the scientific information about my cancer and some titles are so specific about the trial you may not know if it would be good. You can get a broad stroke of trials specific to your cancer.

Look at the list and narrow it down to options you can discuss with your doctor.  Your list may be solely based on location if travel isn’t an option which is easy criteria to use for the first cut.  If you are a woman, another resource for finding a trial is through the Foundation for Women’s Cancer.  Their site seems more user-friendly when searching.  The bottom line is always to discuss the options with your doctor, in case I hadn’t mentioned that already.

Guinea Pig?

I’ve heard people say that they aren’t going to be a “guinea pig”.  I don’t see trials as them using me for testing.  I think I’m using them to stay alive more than they are using me to see if something works.  Why wouldn’t I want to take advantage of cutting-edge research that could save my life?  Again, the science made sense to me.  One of the trials that I will detail in a future post increased the number of cells in my body that know how to fight my cancer but there weren’t enough of them. It makes sense to me to increase those cells. I see this as me using their technology and brainpower to stay alive. If they gain valuable information to help other patients that’s a bonus.

 

There are so many advancements in research and that it gives me hope. Maybe I’ve mentioned that once or twice? There is likely data about response rates for the standard of care chemo and if those numbers are good, then that’s a factor you need to consider as well.  Asking your doctor is the best information there is.  If a high percentage of patients respond to standard of care, then there may be no need for you to consider a cancer clinical trial.  When I was told that the response rate for standard of care chemo was 15%, I knew I needed more than that.