Living With Metastatic Breast Cancer: Accessing Clinical Trials
What is your personal experience with accessing clinical trials?
I am currently participating in a clinical trial for an investigational drug. It’s a targeted therapy, which, in conjunction with an aromatase inhibitor, aims to extend the time where I am progression-free.
What are the steps involved?
I take two pills of the investigational drug along with one AI pill daily, with a big glass of water. I must take it within 2 hours +/- the previous day’s ingestion time. I can’t eat or drink anything (water included) for an hour before and after. I write it all down in a log that I maintain and turn in monthly.
I have monthly clinic visits with blood work to ensure that I’m still in good shape to participate, and quarterly CT scans. In the beginning, the scans were monthly, alternating between bone and CT scans.
Do you need to know how to read your medical report? Do you have access to it?
Yes, I have access online to my medical reports. I am getting better at reading them, but I always have questions for my oncologist.
How do you bring this topic up with your doctor?
I was really upfront and candid. When I started treatment, I was already stage 4, and I knew that my cancer is not curable with any existing treatment, so I figured that my best chances might be in development. I told my oncologist that I was interested in participating in a trial, should one arise that was a good match with my disease profile.
He did genetic testing of my primary tumour to pre-qualify me for treatments. When my first treatment failed, he told me about the trial that I am on now.
When is the best time to bring it up with your medical team?
I think that if you want to participate in trials, the earlier, the better, but there is no wrong time. You can always pass on a trial if it doesn’t feel right to you, but if your team knows this is of interest to you, they’re more likely to keep an eye out for something that can help you. You can also keep an eye out for trials that interest you and bring them up specifically with your medical team.
It can be tricky, because you have to have a treatment fail you to qualify for many trials, but many trials require that you’ve not had every possible treatment. It’s a very personal choice.
What does it mean to be proactive or a self-advocate?
With all the information out there, and all the drugs in development, not all doctors will know about everything in development, so you may need to self-advocate. That can mean checking out websites like clinicaltrials.gov where you can search for trials near you, or for trials that target your type of cancer, then bringing them up with your medical team. You may need to travel to participate in a promising trial, depending on where you live.
How can friends and family help you sift through the data?
If they understand the details of your disease, friends and family could do some of the heavy lifting, sorting through all the trial listings, looking for promising possibilities, and giving you a culled list of possibilities. It can be really overwhelming.
What are some of the obstacles or barriers to accessing clinical trials?
Geography can be really challenging, especially in a country as big as Canada. Sometimes a trial is only offered in a few research facilities. If you’re at a research hospital, you might be able to have continuity of treatment, but often, if you go on a trial you go off of treatment with your usual oncologist, transferring care to the principal researcher. I knew this going in, so I looked for an oncologist at a research hospital involved directly in research, and I am still under his care during this trial.