Overcoming the Odds: Steven's Journey with Stage IV RCC - Episode 4
Karl J. D’Silva, M.D.: Steve, so when we met on that day, it was two weeks after your surgery, and we were talking about the different treatment options. The thinking was whether to use the tyrosine kinase inhibitor as immunotherapy, and we went to the tyrosine kinase inhibitor route because it was an aggressive disease. And as I said to you, the tyrosine kinase inhibitor that had been recently approved was cabozantinib. And cabozantinib was approved for intermediate and high-risk patients. You fell into all the criteria for the cabozantinib. It was very important that we needed to block the mechanism that was driving your cancer. And as I said, cabozantinib stops the VEGF [vascular endothelial growth factor] , the MET and AXL, which is unique to cabozantinib. We did not know because it had already spread to the liver, to the lung, to the retroperitoneum. As I said, I wanted you to be a part of the decision-making process. We talked about side effects; what was your feeling when I discussed the side effects at that time?
Steven Gallant: Well believe it or not, I really didn’t care about the side effects. I just wanted to make sure the cancer was gone. The only thing I worried about was, of course, the pain because I had seen family members in a lot of pain. I knew that with almost any drug you have stomach issues. So I was only concerned about the pain at the beginning from the medicine itself and the side effect of the stomach, because I knew how important it was to eat, drink, and of quality of life obviously to be out of pain.
Karl J. D’Silva, M.D.: Yes, I do remember you had a chemotherapy teaching with our nurse practitioner to go over all the side effects and who to call in the care team. I do think you must have because we had given you a number of who to call. How was your interaction with that?
Steven Gallant: Well from day one, my sister and my brother-in-law, they came to the hospital and they said that they wanted me to move in with them. So from day one, I was all set as far as making sure that I had somebody to help with care, you know, every-day care. I was hooked up with an outside nursing company who sent somebody down, a palliative care nurse, and the one who I saw the most was Veronica Ward. She would come in and she sat with me and helped from early on with the side effects of stuff that was happening right after the operation. And then, of course, after I started the medications, after the five weeks. She would come and sit with me once a week, and we would discuss everything that happened that week in pretty much every little detail. She was there for an hour, which was nice.
Karl J. D’Silva, M.D.: That’s really nice because as you know this targeted therapy also has side effects. We are always talking about how great these drugs are. But with every drug comes a few side effects. And we always talk about the risk and benefit of this treatment and how to mitigate some of the toxicity. I remember you talking to me about the fatigue. You really were having a tough time because you were very active, you were into construction work, and you were always wondering whether you would be able to go back to work.
Steven Gallant: Yes.
Karl J. D’Silva, M.D.: So how did you overcome some of the side effects?
Steven Gallant: Before I got sick, like I said earlier, I was in construction and one of the things I did was I used to hang sheetrock and that was one of the things I really liked to do, it was just physical. It was like going to the gym every day and getting paid, which I really liked. And I had incredible endurance, so I was able to work seven days a week any time I wanted. So any time I wanted to buy something, I wanted to buy a Harley, I worked 90 days in a row and I bought a Harley-Davidson. I had incredible endurance.
After the operation I couldn’t even get out of the chair. I couldn’t even get out of the wheelchair. It was amazing, I needed help. Going to the bathroom, we had to set up four chairs on the way to the bathroom, which was only like 50 feet. That was right after the operation. I knew going forward that taking the medication could compound all of that and make it worse. One of the issues I had was about the side effects and going forward and whether that was going to make everything worse. And how to make sure that it didn’t get worse.
Karl J. D’Silva, M.D.: I remember you asking me whether we could reduce the dose. As I said to him, cabozantinib is given in the dose of 60 mg daily, and we want to replicate what the clinical trials had shown, the result. He was coming initially every week and then every two weeks to monitor some of the side effects.
I said, let’s continue. I hope you can endure some of the issues that are there with any drug for that matter. He started walking. He was more energetic, but he felt a little that his endurance was not coming back. And I said, we will continue with the 60 mg dose, but we can take one day off and see how you feel. And I think you felt much better after that, am I right?
Steven Gallant: When you’re in the middle of it, every day is like a year. So after we started, and I was doing it seven days a week, the side effects were pretty intense. There was a lot of pain. I don’t like taking drugs. I don’t do yellow dye, I don’t do aspartame, I don’t do aspirin. I don’t do anything that’s in a box. I did a lot of all natural fruits, vegetables, right? Everything. So having the stomach issues was pretty devastating. It limited the stuff I could eat and drink. I just stayed with water, obviously, which I had to force down as many bottles a day as I could.
But the first three months doing the chemotherapy, the cabo [cabozantinib] seven days a week, was debilitating I would say. We saw results obviously. Every time I went to you, and every month I went, we got the CT [computed tomography] scans, you could see that the tumors were shrinking. And my body weight was dissipating very quickly. I was 275 pounds when I first got sick. I think when I saw you in February I was about 257, right around there. I guess that’s the weight of the organs? I don’t know. But I started to lose weight. But then when I started the cabozantinib, the weight poured off of me real fast. So between March and September I lost a total of about 60 pounds.
I’d gone down to 192 by September. And for a lot of people who might be watching this, “Well, 192, that’s a great weight.” But you’re talking to somebody who was 6 feet 2 inches, 275 pounds, I was massive. I was incredibly strong. I’d been working out my whole life. And doing what I did for work kept me strong. I was very active. I could even do full splits and stuff. I was doing yoga, I’d do yoga before all my workouts. And so being 192 to me was terrible. I felt small, weak. But my endurance did start increasing as the summer went through.
Karl J. D’Silva, M.D.: Yes, I remember that.
Steven Gallant: Because I started pushing myself. I started to be able to do sets of 100 pushups. What happened was I’d do one. My first time I could only do one pushup. And I’d force myself to walk; I had a walker so it was helpful. But I would just force myself every day to do more. So in the summertime— March, April, May—was really tough because I didn’t do much other than just lie down and meditate. I’d meditate six hours a day on just trying to kill a cancer.
I thought of my body as a machine producing killer T cells, along with the medicine. I would concentrate on my killer T cells killing the cancer, like a little Pac-Man.
Transcript Edited for Clarity