What is your experience with clinical trials?
Clinical trials can offer a potential additional treatment option and hope to certain patients, especially those for whom standard therapies have not worked. We’d love to hear about your experiences with clinical trials for advanced breast cancer and have a few thought-starter questions to get you started.
- Are you currently or have you previously participated in a clinical trial? Was it a positive or negative experience (or neutral)?
- Have you been interested in participating in a clinical trial but could not find one or did not qualify?
- Are you hesitant to participate in a clinical trial?
We'd love to hear about your experience, thoughts, and any advice you might have for the community.
Learn more about clinical trials in our collection of articles: https://advancedbreastcancer.net/clinical-trials-101
I’m currently in a clinical trial -my second one. The upside has been that I am very closely monitored. I get more blood labs and other tests and more frequent scans. My drugs have been oral so they are postponing IV chemo for me. My research oncologist and everyone in that office is amazing. And I’m not just wishing for a cure. I’m helping to find one. This is very important to me.
To keep things real, there is a downside. Both of my trials have been Phase 1 and there are more unknowns with Phase 1. In Phase 1 you will be one of the first humans to ingest this drug. They are determining what dose the human body can tolerate, side effects and if the drug has the potential to be as effective in humans as it has been in labs. If I was to go back to when I was first diagnosed MBC, I said I would never join a Phase 1 and yet I’ve done it twice! Back then I was a bit scared to join a trial. Now I’m like “bring it on”. Part of that is because I’ve changed over the last 3 years and part of that is because I’m more educated now making me less afraid to take a risk. If you are on the fence about joining a trial, remember that you can drop out of a trial at any time. No justification is needed.Thank you so much for sharing your experience with the community. I like how you can reflect back to when you were first diagnosed with MBC and see the difference in attitude and perception. What do you think changed for you to go from "never" to "twice"? Do you have any advice for someone who might be considering a clinical trial - what are things you would recommend they consider? Warmly, Patty, Team Member There are so many factors that played a role in my attitude change. As lumpie states below, learning that you will get a drug, whether it is the SOC (in some trials) or the actual trial drug, gave me confidence to join. And you can drop out at any time, for any reason. Signing the consent doesn’t take away your ability to change your mind. Those are just two attitude adjusters. At initial diagnosis, I was afraid that trial drugs may have more side effects. That’s not necessarily true. Even on the Phase 1 dose escalation phase, you are monitored so closely that any side effects are addressed asap. In all honesty, I had a bad reaction to the first dose of the first trial drug, but my dose was quickly reduced and the remaining side effects were managed. And my second trial drug doesn’t really have any side effects. My trial doctor explained the trial, sent me home with a packet of reading material and I wasn’t allowed to sign the consent until a later date. They want to give you time to digest the information and not rush into signing.
Time commitment is something to consider but my experience is that once I completed the initial testing and the first month’s dose, the time commitment is no more then I’d expect on any cancer drug except that I’ve been getting scans every 8 weeks.
I have participated in two clinical trails. My experience was good in each. On one trial, I felt like I had an especially good rapport with the physician in charge... which was a plus. I got extra screening, extra time with the doctors, interacted with fellows (doctors in the advanced stages of post-MD training) so I felt like I was contributing to the future of medicine, and was able to contribute to the development of drugs that might save lives (one turned out to be a blockbuster. I was in the arm that didn't get it, but I can still say I contributed!)
Reality checks: not all drugs/treatments/trials work (for you) so keep expectations realistic. Carefully assess how cooperative your insurance will be about covering certain costs. If a drug company or equipment manufacturer is running the trial, in most cases, they will pay for the majority of costs. Sometimes, there may still be some expenses (routine labs, imaging that would need to be done anyway) that are the patient's responsibility. If you have insurance, it should cover these costs, but it is best to get approval in writing in advance. Participating in a trial can take additional time and effort on a patient's part... so get details about what to expect and plan accordingly. It might even result in some additional expenses - like if you need to travel. But some trials have a budget to help with those costs, so if they are a concern, be sure to ask.
A critical piece on information I think people need: it is *never* ethical to withhold treatment from a cancer patient (at least not without their consent). Many people have told me that they would not consider participating in a clinical trial because they are afraid they would be given a placebo... in other words, not be treated. This will never happen without your consent in a legitimate clinical trial. Don't assume the worst and rule a clinical trial out before you give it fair consideration. Some trials assess how the standard treatment compares to the standard treatment plus a new drug. In a case like that, you might get the treatment you would get anyway - they just want to monitor you carefully to see how your arm of the trial compares. You might get the arm of the trail that involves the standard drug plus a new drug. Were the results better? Or perhaps the new drug made no difference. Sometimes trials assess a new treatment technique or equipment (like radiation delivery methods or machines). Without the information these trials generate, we will never make progress in our struggle to outsmart cancer. You have to do what you think and feel is right for you, but it is worthwhile to consider clinical trials.
NIH maintains a registry of clinical trials. You can find it here: https://clinicaltrials.gov/ And https://www.breastcancertrials.org/ features clinical trials specifically for breast cancer patients.Hi
. Thank you for sharing all your experiences with clinical trials. You've provided a great deal of information that I am sure will be helpful to the community. The extra time and cost of clinical trials are certainly a barrier for some. But, as you said, asking questions and getting details about what to expect are key consideration factors. I'd love to hear a bit more about how you got involved with clinical trials initially. Did you seek them out on your own or did your healthcare team approach you about participation? How did you connect with the trials? Thank you again for sharing! Warmly, Patty, Team Member
