Dr Edwin Posadas:

But these partnerships ultimately come down to the star of our show and that’s the patient, and we’re fortunate to have Greg with us who’s walked, who’s walked that journey, who’s walked a mile in those shoes.

Greg, you know, you’ve experienced, or you’ve been part of this change in renal cell carcinoma with new treatments. I want you to tell us a little bit about your journey with kidney cancer. And then we’ll get into a little bit about how the shared decision-making and its impact on your treatment outcomes. So, let’s start with your kidney cancer. How did you, how did all this come to pass where you were told you needed to have treatment?

Greg Biddulph:

I originally was diagnosed with stage 3 kidney cancer. And during that process it metastasized, and I found out that I was going to have to go on treatment. That is a very difficult diagnosis to take on. Understanding that you have stage 4, it can be overwhelming. And you have a lot of different emotions that go with that particular time. It makes it very difficult to really process all that information initially to the point where maybe after that first visit you’re going out and you’re looking at “Dr Google” or you’re looking at Facebook, you know, and seeing what people are saying. And really what you have to learn over time is trust your care team. And that was the early part of what I had to do is learn to trust my care team that what they’re telling me is what’s going to be best for my future.

Dr Edwin Posadas:

And Greg, you were recommended to have treatment with the axitinib and pembrolizumab combination. Tell us a little bit about what that was like to get started on that. And how did you and your health team, your healthcare team manage the side effects that you experienced?

Greg Biddulph:

So, when we first got started with it, they gave me a general list of some things that could be possible adverse effects that I was going to face. So those were things that I watched out for. But I also had a background working in an industry that was adjacent to breast cancer and breast cancer lymphedema. And in doing so, I also had access to other types of people in my business world who kind of directed me to other things to do to help mitigate these adverse effects like exercise and diet and nutrition and how these other things can also help. So these oncology rehab professionals or exercise oncology specialists or nutritionists that I have in my professional social network, they provided invaluable information to me to help me, also, not just wait for an adverse effect to happen to actually try to prevent it.

Dr Edwin Posadas:

Outstanding.

Which of these, I had mentioned earlier in this podcast some of the side effects like fatigue and diarrhea and hypertension. But you touched, I think there were a couple others that you’ve experienced along the way. Can you tell us a little bit how things like your thyroid, the fatigue, the muscle aches, how did they impact your quality of life, Greg?

Greg Biddulph:

I learned through the different… some things I can manage on my own. When it comes to fatigue, you know, exercise is a huge, huge benefit for me. I kind of refer to it as jump-starting my metabolism so I get on, and I can get myself a good exercise. I get re-energized. I’ve also had diarrhea. Some of that was being managed pharmaceutically, but then what I started to learn is there’s things I could change that were trigger foods in my diet that I could change and eliminate.

And those trigger foods, by eliminating them, was helping to mitigate that problem as well. I also had hypothyroidism so that also was things that pharmaceuticals had to help benefit. Hypertension, same thing, I had to take some different medicines for that.

But as far as the muscle aches and pains..., that sometimes was just a matter of stretching and moving. Generally speaking, when you have a diagnosis like this, the people around you want to say, just relax, just stay tight. And I found the exact opposite is better for me: to get up and move around and get my muscles moving and get my blood flowing was very beneficial for me.

Dr Edwin Posadas:

Greg, you raise a really good point. Everyone, everyone reacts to things a little bit differently. The laundry list of complications that we can go through can be a little bit intimidating. How did you—you and your team engage in shared decision-making: (a) you know, as a patient who is starting to address your concerns and (b) as someone actually experiencing some of these side effects? Because from the way you’re describing them, it sounds like, you know, while it may... alarm a patient who’s about to get started on treatment that, wow this guy had had a lot of things. I’m seeing you on my screen. I’m talking to you [and] I’m thinking you’ve had pretty good outcomes on the whole [since] you started your treatment. Is it about 3 years ago at this point?

Greg Biddulph:

Correct, I’ve been on treatment for 3 years. During that time, ...I experienced 26 months of being NED (no evidence of disease). But at that point shared decision-making was a big part of that. Even as you’re going through the NED, my doctor, we constantly had communication that if we go to this point what are we going to do, what are we going to do after 2 years? Are we going to continue on treatment, are we not? And we went back and forth and when it was a constant, where my doctor was looking at the data and making a decision of what was the risk versus reward of me going on, or maybe [pausing] treatment for a while which we did. We stop treatment for a while and unfortunately it didn’t work, and we had to go back on. And then it was [a] matter [of], do we go the same path we’re on currently? Or do we try [one]... we were previously on? Or do we try a different path? And ultimately, we decided to stay with what worked and it seems to be working again which is, you know, has me very excited.

Dr Edwin Posadas:

Do you think that shared decision-making allowed you to personalize the approach to you and your kidney cancer management in a way that impacted your outcomes.

Greg Biddulph:

I think what it really allows you to have [is] that voice to advocacy for yourself. And that’s something that you see a lot where people are recommending people should advocate for themselves, and having a voice in there allows you to have that trust in your care team that you’re working together to formulate the best solution that’s going to make you have the best outcome.

Dr Edwin Posadas:

And Greg, you know as the patient, Nancy and I are here representing the physician’s voice and a nurse’s voice, which we like to think are important. We like what it is that we do. But who else was on that team, Greg? It sounds like you had a lot of other voices that helped you, to help guide you. You had some background that maybe some other folks don’t but everyone comes to this, comes to this journey, with different pieces of intellectual and historical experience with them. But how did you utilize what you had versus you know what you needed that you didn’t already have in your armamentarium? Who did you put on your team?

Greg Biddulph:

So, my nurse and my doctor were the key, most instrumental people... I kind of have different roles for everybody in my participant [list], right; ...my doctor, he manages my treatment, he manages my scans and give you those results, and we identify courses of action. Whereas my nurse, she’s a little bit more of my confidant, she’s easier to talk to, a little less intimidating for me. Our meetings when I’m meeting with my nurse were a little bit more relaxed because we don’t have stress of scans over [the] top of our heads. So, you know, ...these are things what makes the conversation with her a little bit easier to go about.

But then outside of that, then that’s why I formulated... my informal [team]. My informal [team] is the people that I have in my social network, my professional social network, who are oncology rehab professionals. Who are exercise oncology professionals. These are people I was very, very, very fortunate over the years of my professional employment that I was able to come to know, and they have been very instrumental, even though they probably don’t even know it, but the research and the best practices they post online are things that I read and I look at those things, I actually include them as part of my care team because they provide so much valuable information to help me manage this process and getting through this.

Dr Edwin Posadas:

And Greg as a patient… Well first, I apologize on behalf of physicians because I know that there’s a certain different dynamic in the room. I have been alerted by this by Nancy and others that sometimes it’s just easier to talk to someone else, but I can actually assure you one of the great things about this process is that as a team, when we manage a patient, as much as your nurses are your confidant, they try to filter things to the distracted physician to make sure that we’re paying attention to issues that are important or in their experience will make a difference now. Nancy, is that... fair to say? You’ve worked with several of us.

Nancy Moldawer:

Absolutely, I agree.