A day in the life of a clinical trial patient: Part two
Signing up a clinical trial can feel quite daunting. You may have questions about what the trial process is like, or want to know how other participants have gotten on first-hand. You’re not alone. We’ve put together a blog series to follow the “diary” of Mark Blyth, a fictional patient volunteer, to help give you a sense of what it can be like to participate in a clinical trial; this blog is the second installment.
Mark Blyth: Clinical trial participant
After being diagnosed with prostate cancer in May 2016, our fictional patient Mark Blyth was having mixed results from his treatment. Mark decided to enroll in a phase 3 clinical trial, testing a developmental immunotherapy drug targeted at treating prostate cancer. Our previous blog covered Mark’s enrollment and first day of the trial. This latest blog covers his day-to-day life as part of the trial, and his various support networks.
This blog series is based on insights from real patients that have been combined and adapted to create Mark’s clinical trial diary. All the people included in this diary are fictional characters.
Thursday 9th January: Friends and family
I’ve been in the trial a couple of weeks now. My partner is completely on board with everything, and has been really supportive. Not everyone has been so understanding – after speaking to my friend José on the phone, it’s clear he’s been stewing about me participating in the trial.
“Why would you risk being given this drug, Mike?” – he said to me. I’d thought about this a lot before joining the trial. After doing my research and checking the facts on clinical trials, I knew what was involved and why I’d signed up. It may be hard for others to understand if they haven’t been in this situation though.
I told him I’d already tried other treatments after my diagnosis with no luck – these drugs have already gone through vigorous testing and other trials, so I trust the doctors. I was a little surprised with the conviction in my answer, and so was José – he quickly dropped the matter and moved on.
I’ve had mixed response from my family and friends, although most have been supportive of my decision. At the end of the day, they’re all looking out for me and want to see me get better. It’s still very early days for this clinical trial and we all just need some time to process.
Sunday 19th January: Business as usual
Nothing much has changed really, since my last entry. I’m carrying on my daily routine as usual – get up, breakfast, tidy the house, feed the cat. By lunchtime I was craving some fresh air, so stopped at the shop to pick up some lunch. Passed my favorite garden store on the way back and picked up some new plants. On a sunny day like today it’s hard to resist, and I struggled to carry my new purchases home.
Spent the afternoon tackling the garden to pot my new plants. It’s taking me a while longer as I don’t quite have the stamina for heavy work like I used to. Hoping it’ll come back soon – I love gardening.
After a quiet evening chatting to my partner on the phone, I headed to bed. When clicking off the light, I remembered I had to fill out the health report on the clinical trial app for the week. Filled it out relatively quickly – now time for some sleep!
Wednesday 5thth February: Connecting with others
A new Facebook group has been set up for everyone that has been diagnosed with prostate cancer in my area. There’s about 50 or so of us in total. Some look about my age, others older, some younger. I’ve spent a good portion of my afternoon scrolling through the posts, getting a feel for the community.
There are definitely some characters in this group, that’s for sure. Lots of people are introducing themselves and explaining their cancer story. Some stories are quite heavy, others are keeping it light-hearted. There are some members of the group who are very vocal, commenting on everybody’s posts and offering support.
I’m not quite ready to share my story yet, but I’m hoping to ease myself in soon. Maybe I’ll start with liking somebody’s post. It seems like a good place to get some tips and support about living with prostate cancer– it’s nice to have another community alongside my patient advocacy group where people understand what I’m going through.
Participate in a clinical trial
Mark’s diary is an illustration of what life can be like while taking part in a clinical trial. The third installment of the blog series will be available soon, so keep an eye out.
If Mark’s story has encouraged you to learn more about clinical trials, we have a number of resources available. Our hub covers articles ranging from how to find a clinical trial to why clinical trials are so important, helping to answer any questions you may have.
If you’re interested in participating in a clinical trial, have a conversation with your healthcare provider.