Becoming an Active Patient During Kidney Cancer Treatment - Episode 2

Speaking Out About Side Effects From Kidney Cancer Treatment

As a part of its Speaking Out video series, on behalf of KidneyCAN, CURE® spoke with Meryl Uranga, a patient advocate, about the side effects associated with kidney cancer treatment.

Kristie L. Kahl: Why is it important for patients to learn about and understand the side effects that they might also go through from each respective treatment?

Meryl Uranga: I think there's two very important reasons. Number one, is that they can be life threatening. Kidney cancer is a cancer that responds very well to immunotherapy, which is a relatively new modality. And it's powerful and it's been very, very successful. But with that powerful piece, it also can have very dire effects on people and their immune system. So that being said, (patients) absolutely have to know. To the point of memorizing what to look out for and what to report back with. I don't think people, because of the newness of it, in general are nearly as aware as they should be of how critical it is to when you're on immunotherapy to report everything. Because everything can be handled, everything can be managed, but if they aren't, they can become dangerous very quickly.

I had a situation with my first immunotherapy that it took a while of figuring out what it was but it actually affected my pituitary gland and it wasn't working and I needed a course of high dose steroids in order to calm down. I had brutal headaches and then ended up with adrenal insufficiency. So, you can go into a dangerous situation very quickly.

And then the second part of that is that the side effects also can really affect your quality of life. And so, you want to jump on it and you want to make sure that you have your team working with you on how to manage those so that your quality of life is as good as it possibly can be. And that can mean anything from supporting things that control the symptoms of their side effects. (For example), if it's gastrointestinal, there can be something you can take for that or nausea or diarrhea. And also, on top of that, you can work on taking breaks. The TKI class of drugs, very commonly have breaks either built in or you work with your team to create them for you where your body gets a rest, it clears the drug for a certain amount of time and then restart. That really affects quality of life for people very much. And so, you see that when you're on these treatments, it's really important part of the teamwork that you have with your physicians to work on side effects on both of those levels.

Kahl: Breaks in treatment can sometimes scare patients or give a misconception that they’re done on that drug so they don’t report side effects. Can you explain why dose reductions or treatment breaks aren’t necessarily a bad thing?

Uranga: Oh, they're not a bad thing at all. In fact, they're a fabulous thing because they can actually keep you on a treatment longer. They can extend the longevity of a treatment and really your goal should always be to extend and stay on it. Get as much mileage as you can from each treatment because then you're moving on to the next one when it is no longer effective, but they're fabulous. People are different, their bodies are different, their metabolism is different. One person could be on five milligrams of a drug and have more side effects and some would just sail through it. So, it's a very personalized thing. And so, it's just super important that you're letting your team know how your life is going on it. And either the breaks or the dose reduction will extend your time on that drug, and they will carefully monitor your scans and make sure that there's no efficacy being lost. That's not really your concern at that point. I mean, obviously, we all think about things like that, like “if they reduce my dose, is it still going to work?” Well, they just have to find your sweet spot where you can live your life and also have control of your disease.

Kahl: Discussing side effects with a care team is essential, do you have any advice or suggestions for fellow patients to help track side effects?

Uranga: When I started out I kept a log especially for things like blood pressure. … It's very difficult sometimes to control blood pressure on TKIs. And so when you're messaging (physicians) on the portal or calling them and saying “my blood pressure's up,” it's not enough. You need to keep track of what the ratings are, when and how often you're doing them. I don't want this to sound overwhelming to people, it's not something that you're going to do forever but just to get started and find the right management. If you need a medication to manage blood pressure or dose reduction or whatever it ends up being they will work with you and find that right place for you and you're not going to be keeping a blood pressure log forever. But it's a great idea in the beginning.

I also remember that when I started the TKI drug that I'm on now, within 24 hours I had an issue, and it was a heart issue which was really scary. My heart rate went so low when I was sleeping. I was wearing a Fitbit, which I always wear and I felt weird. And then I looked at my Fitbit and my heart rate was in the 30’s. That’s not good. And I had to go through a big cardiovascular workup and wear a monitor and I had to track and log my heart rate for quite a while, but it was very effective in helping them kind of nail it down. I ended up being diagnosed with bradycardia as a side effect, which is generally just a low heart rate and I still have it but we know it's not anything. When I take breaks from the drug it immediately goes up. But we had a cardio oncologist involved in everything and I was able to really give them a lot of good data by keeping track of that on my Fitbit. So that's another tool. You can use any kind of tracking that you're able to do, especially at the beginning starting a new treatment.

Kahl: What is your advice for other patients to be able to go to their doctors and talk about their side effects more openly?

Uranga: My advice number one is to find the right fit for you. Find someone who treats you as a partner, who respects you as a patient and as a human being and is on the same page with you in terms of how you will manage your care. Once you have that in place the rest will be relatively easy because you've set expectations about your relationship. And so whenever there is anything like a side effect to manage or a treatment change or progression on a scan or anything that's very critical in our care, then you already have established that relationship and you respect each other's view. There were a couple of incidences throughout the last few years for me where I went to my doctor and said “Hey, this is what I think going on. What do you think?” And he ended up coming back and saying you are right. But he knows that's a priority for me. And so, I think that any patient that wants that kind of relationship needs to set that with them. Not just physician but their whole team because you're working with all the people and they’ll understand you and your objectives a lot better that way.

Transcription edited for clarity.