Joining a Clinical Trial

Kristie L. Kahl: why is it so important for patients to consider joining a clinical trial?

Jamil Rivers: Oh my goodness, clinical trials are the best because you get the best care with clinical trials. I mean, you are going to be privy and receive the most innovative and on-the-pulse treatment for your particular breast cancer. And you're going to really be monitored and you have the most quality care. You have so many layers and eyes on how you're doing in order to see whether or not if it is effective. And so it's almost as if you're getting the platinum package when it comes to cancer care when you enroll in a clinical trial.

Kristie L. Kahl: How can patients try to learn more about clinical trials and to see if they might be eligible for one?

Jamil Rivers: The best one, I would say, start with your immediate center. That way you're more comfortable, and you've kind of developed a relationship with your current oncologist. maybe ask whether or not they have clinical trials available at that particular center. Or if they're ones that they're eligible for, even if your treatment is going good right now think about: What happens if this particular treatment fails? Do you have me in mind for any clinical trials? If, you don't have me in mind for a clinical trial, why not? Which ones are for my type of cancer? Will I still be eligible for a clinical trial? If I go ahead and choose that drug, do I have any current side effects or issues that could prohibit me for being eligible for a clinical trial?

Also, there are websites online…There’s a bunch of support organizations where you can go to where you can identify and look up clinical trials for your particular subtype of breast cancer. You can isolate it and filter where it only provides the ones that are for metastatic breast cancer and pull those up. Look for those ones that are near your area. Think about travel – how far you would like to travel because you are going to have to be seen and tested a lot more. So just think about how could you fit this into your life. Look it up by the zip code and find a clinical trial in your area. And then that way you can see what it is that they're testing, and they usually include that in the clinical trial information. If it's a particular drug, if it's a particular treatment, they have a hypothesis that they're trying to study and test. And so why is it that they want to particularly focus on this? Why is it so much more effective in their mind? And could this benefit you with your particular type of cancer?

Kristie L. Kahl: Are there any misconceptions that we can talk about with clinical trials to try to negate?

Jamil Rivers: For one with the metastatic breast cancer trial, you're not going to get a placebo, they're not going to give you no treatment at all. So usually there will be cohorts where you know that you might be randomized and included in the cohort that is testing a particular drug, or you'll receive standard of care at least.

Another one is that it's expensive. There are certain costs that are going to be covered by your clinical trial. So ,it's not something that is necessarily unattainable, or it can't be incorporated into your care.

Another one that's interesting that's not true is that it's going to make your cancer worse, or that it's going to make your cancer spread more, or that they want you to be a guinea pig, and they're not going to treat you and they're just going to watch you deteriorate. There are guidelines and regulations as far as the FDA is concerned, really rigorous, as far as the testing and how they can treat patients during a clinical trial. And so I know that we've had horror stories in the past, but now there are regulations due to that. And so you will get the platinum package when it comes to clinical trials and get really great treatment as far as your particular cancer with so much attention and focus put on it.

Kristie L. Kahl: Are there any clinical trials that are ongoing that we can talk about?

Jamil Rivers: They're testing your particular genomic profile to see if there are certain drugs or to hone in on your particular cancer. That's definitely one I would say that if you have triple-negative breast cancer and you're having issues with your particular treatment, or even if you are other subtypes, and it's just not at the level where you're having good quality of life, or you're having a lot of pain or you're having a lot of side effects, look into a clinical trial. There might be one that is actually a bit more effective. So, some of the pharma companies are sponsoring clinical trials throughout the area. A lot of it is expansion on immunotherapies, targeted therapies and newer inhibitors to focus on and so those are the ones that I think have a lot of promise that you can look up in your area because it is less invasive. It's more targeted, and it creates a more durable response because it is suppressing specifically what is fueling your breast cancer.

Kristie L. Kahl: What would you say is your biggest piece of advice for a patient who's considering joining a clinical trial?

Jamil Rivers: My biggest piece of advice would be to be open and be just transparent about everything that you're going through. Talk about your fears, talk about your side effects, talk about your current treatments and what's working and what's not working. They really need that information to understand what works best for you. I know a lot of patients sometimes they're thinking, well, if I share that I'm having this side effect, they might take me off the drug. And it's always tempting to stick with the devil than to try something different. But if you could have less side effects and less pain with a more effective drug, because it's targeting specifically what’s fueling that cancer, then it might be worth pursuing that. So I would say, just be open.

Think about the possibilities where you're not necessarily holding yourself back when it comes to clinical trials and shop around. And if you feel that that respect isn't there, or that relationship isn't there, by all means, go ahead and keep looking for second opinions. It’s not being disloyal to your oncology team or your doctor. It really is about you. It is really about you and your cancer and making sure that you get the best care possible.