I’ve said before that clinical trials gave me hope. Hope because there are new treatments being researched that have given me options outside of the standard of care chemotherapy. Not only have response rates been higher on the trials but the evolving science and knowledge that we now have about cancer allow scientists and doctors to beat cancer at its own game.

I have been on have been Phase 1 and Phase 2 clinical trials. There are five different clinical trial phases. Click here to link to the National Institute of Health’s description of the different stages of a trial.

There have been three different trials in which I’ve participated. I responded favorably to all three but only temporarily.  I’ve since eliminated some stress from my life and am hoping that I never have a need for another trial and can stay on the maintenance chemo, Avastin, free from major side effects for a very long time.

This post will be specifically about the very first trial with additional posts about the subsequent trials.

 

First Experience With A Clinical Trial

The first trial that I participated in was for my first recurrence of cervical cancer in 2011.  The cancer had spread to the lymph nodes throughout my body, from my neck to my groin.  I was given the option to participate in a trial through my doctor at MD Anderson in Houston TX.  At the time the response rate for traditional, or standard of care chemo was 15%.  I wrote about my options in a post at the time which can be found by clicking here. The trial that was available was seeing higher response numbers closer to 31%.  If I had the chance to roll the dice and increase my odds by 16%, I was going to do it.

The trial was a Phase 2 trial using two chemo drugs, Cisplatin and Alimta. Those specific drugs had been used in the past, but not together for recurrent cervix cancer.  The infusions lasted nine plus hours once every three weeks.  I didn’t have a port and it was super painful through my IV. Getting a port is a recommendation I would make without hesitation. I now have one and it has made my life with cancer more pleasant.

I blogged about this trial when I was going through it in 2011 – 2012 and have moved the posts over to this site if you want to go back and read the details of that journey.  If you followed that journey back then you will be happy to see that I’ve learned how to spell recurrence since those days but I know you won’t judge….I had cancer!

 

Is Travel An Option?

Trials are offered at specific facilities so travel is a major factor when looking for and considering a trial.

For the first trial I traveled from my home in FL to Houston for treatment every three weeks which added another layer of challenge to participating. At the time, I didn’t give it any thought but looking back, I’m not sure how I did it. Short of the expense of travel, it can be exhausting on a good day, let alone with the side effects of chemo. Flying there I was a healthy woman walking on and off the plane but the return flight was a whole different story. I remember being asked if I needed a wheelchair. It was tough to say yes but there was no other way I would make it.

In a subsequent post, I’ll write about a trial in which I participated in Billings Montana. Orlando to Billings…in the winter…isn’t a quick or easy flight but it was the option my doctor thought was best if I could make it work.

 

 

Trial Outcomes – Yikes

At the end of my first trial, I learned that there were 54 women who had participated, 17 (31%) of which responded in some way; 16 had a partial response and one person had a complete response. I was that one response. Needless to say, the trial did not move to a Phase 3 status. This trial is closed but if you want more information about it, click here to go clinicaltrials.gov.

The trial was grueling, but I knew no better.  It was my first time having chemo and feeling really sick for five days after didn’t seem unreasonable. I think what most people think about chemo is that you are sick and I was sick, so that was normal for me. Handfuls of nausea medicine were available. Ignorance wasn’t bliss.  Nothing about the experience was blissful but having no idea of how I would react to chemo and no expectation of how I would feel made it more tolerable…I think.

I responded to this trial for four years.