Educated Patient® Kidney Cancer Summit Panel on Communicating With Providers About Immunotherapy/TKI Combo Treatment: April 9, 2022

This panel was moderated by Kristie L. Kahl and featured Dr. Thomas Hutson, Louise Gunter and Meryl Uranga.

Kahl: I want to shift gears to managing side effects, and also the importance of communicating those with your team? So, Dr. Hutson, why is it important for patients to talk to their providers about the side effects that they're experiencing?

Hutson: Yeah, you know, because you, the goal, at the end of the day, when we're approaching metastatic cancers, for most people is going to be quality of life and prolongation of life. And we can't work on quality of life and the doctor can't understand the impact on quality of life in that 10-minute office visit. So we don't know how that patient is doing at home, unless they tell us. And this is where, to be honest, some people are still very stoic. They don't like to share a lot. And they come in, you ask them how they're doing and they say they're doing fine. But you look at their loved one, and they're shaking, and they're having a fit next to them, saying, no, no, no, that's not true. Having loved ones involved, and going to the office visits and communicating that was very important to know how someone's doing. You can't expect us to know otherwise. Now, sometimes there are side effects that manifest in bloodwork that we have to address. But oftentimes, there are side effects that you're dealing with. And there's no way, if you don't tell us that there's a problem, for us to know that there's a problem.

Kahl: Absolutely. And Meryl, why was your communication with your care team about the side effects from your combination so important?

Uranga: Initially, I would say it was critically important on a double immunotherapy because the risk is so high for these adverse events that can be life threatening. I literally left no stone unturned in terms of reporting any kind of side effects, which did end up being something that needed to be addressed with the adverse event that I did experience on the ongoing combination immunotherapy with TKI. Same thing, in general, just probably not quite as threatening or critical.

I've had, I believe, 42 infusions now if (Keytruda [pembrolizumab]). So I am pretty familiar with what's going on. You never know when that could change. So I do keep a very close eye on things. But I do keep in very close contact with my oncologist and his team on the ebbing and flowing of the TKI. I had one (side effect) in particular that is seemingly very rare, but I had a bradycardia. And I still continue to have it. Whenever I'm consistently on this particular TKI, my heart rate runs very, very low. Kind of like a marathon runner, which is what I joke about. I have had to work with an oncology cardiologist on that. I have a dedicated endocrinologist because of my permanent adrenal insufficiency.

So there is a lot of communication back and forth with this entire extended team in terms of managing side effects, but my quality of life is pretty good. And it's very manageable. And I really am very fortunate to say that even with this ongoing, what I consider chronic treatment that I'll be receiving, I am able to live a very active and high-quality life. So I just kind of want to get that little message of hope in there for anyone listening. That would like to know, because we're talking so much about side effects and they are significant and it is a critical issue. But your life goes on and they're, in general, manageable either with dose adjustments, or just different approaches to managing the things that that you'll have to deal with.

Kahl: Absolutely. And Louise, do you have advice on ways patients can track their side effects so that way they can effectively communicate them with their care team?

Gunter: I always recommend to my patients to keep a detailed journal of all their side effects, their blood pressure readings, a list of their current medications, and just changes in how they're feeling. For example, I had a patient that usually walks a mile every day and, last week, (he) noticed that after just a half a mile he was short of breath. So quantifying symptoms and changes are very informative and helpful. And then when you bring that written journal into us, you know, in the quick appointment, everything gets addressed and not forgotten.

Kahl: Yes, that's great advice. So just one last question. Meryl, for others who may need a dose reduction or closer follow up for their side effects, and based on your own experience, what is your biggest piece of advice for our patients in the audience today?

Uranga: I kind of touched on the last answer is just stay very focused, stay very positive. I remember just being incredibly fearful of starting systemic treatment, because I had a lot of stories, a lot of nightmare things, of course, from reading on the internet, etc. It can really not work in your favor. Educate yourself, become an advocate for yourself, become part of the team. Do not be intimidated or fearful of asking questions and being right on top of this stuff, and just be aware that your team is there to help you manage this. And like I said, in many cases, including my own, you can live a very full, happy, healthy type life, while still dealing with what I consider a chronic illness. I hope it's chronic for a long, long time. And I'm happy to manage those side effects. And frankly, my quality of life is sort of improved in a lot of ways because I know how important things are, like exercise and my diet. And in certain things, I've made big changes, that have really, actually improved other areas of my health. So just hang in there. Be one with your team, be educated, be an advocate be empowered and keep kicking the can down the road.

Raw transcriptions have been lightly edited for clarity.

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