 for oncology. I’m Dr. Karl D’Silva. I’m a medical oncologist and a hematologist and a medical director for the Lahey Cancer Center in Peabody, Massachusetts.

Can you share with us the story about your diagnosis of renal cell cancer?

Absolutely. January. 13th, 2018, I was working in Boston and I was up on a lift and I went right to my knees in pain, and the pain was in the back. I said to my partner, “Mac, I’m not doing too good.” And he was like, “What’s going on?” And I said, “I got a pain in my back. It feels like what my buddy always talked about when he had kidney stones.” And he said, “Gee, Steve, come on down, why don’t you take a break.” So I took a break, I went up back of the jobsite and I lay down and I started drinking water. And after like 20 minutes I went to the bathroom and I urinated straight red. So I went out front and said, “I gotta go to the hospital.” My buddy said he knew somebody at Burlington Lahey Clinic. He said, “Steve, they’re the best kidney people.” And I said, “I’ll go try there.” Because here I was in Boston, I figured I’d go to Mass General maybe. And he was like, “No, go to Lahey Clinic in Burlington.”

So I went to Lahey Clinic and got admitted right away. When I told them what was going on they brought me right in and started blood tests right away. And they had a CT [computed tomography] scan done and within a couple of hours my team of doctors came in and told me what the diagnosis was.

Wow, that’s a very impressive story. So you presented with some blood in the urine. You had back pain, and you hardly could even walk down the lift, wow. Then when they told you about your diagnosis that there was a mass in the belly, what was your decision at that time?

Right away, Dr. Harras Zaid, M.D., who ran the team is the one who approached me and said that there was a mass in my kidney. And he said it was stage 4 renal cell carcinoma. And believe it or not, you know me now after a year, and so you know what I’m like, I didn’t even blink. Right away I put my hand up and I said, “Wait a second.” I thought about what it meant to me. And I’ve come to believe over the last 20 years that any physical injury manifests from the spiritual world.

I know a lot of people don’t believe in that, but I figured that the blood stream represents the flow of life. And the kidneys being a part of that and filtering out the blood flow meant that I was possibly neglecting my flow of life, and that’s exactly what went through my mind right after he told me. So once I figured out why it manifested physically like that from the spiritual world, I looked at him and I really smiled and I said, “All right, I understand, I got it, what can we do? What’s next?”

Steve basically represented one of the standard presentations of a stage 4 renal cell cancer. The tests that were done on him were basically, he came to the emergency department and presented with flank pain, hematuria, and the first thing we do is imaging studies of the abdomen and the pelvis, and you see a huge mass there. And that’s how we were able to come to a diagnosis of renal cell cancer.

So NCCN guidelines that we use today, called the National Comprehensive Cancer Network guidelines, are used to determine whether the patient is in the good risk, intermediate risk or the high risk category. And this criteria have been devised because of the presence of new novel therapies that have been used in the treatment of renal cell cancer.

The Diagnosis of a Patient with Stage 4 Renal Cell Cancer

So Steve, once you were told that you would need to go for treatment, what was the treatment that was offered to you?

Well, they pretty much offered me three right off the top. He said, “You can go home and just take what comes.” I kind of laughed at that. And he said, “We could operate, take out as much as we can and get what we can.” And he said third, “You could start treatment right away, maybe chemotherapy or radiation or something.” I jumped right away. I said, “Listen, if you can take out as much as you can, I’ll take care of the rest.” I said, “I’ll work on the rest. I’ll do the medication after that and we’ll see what happens.” So I was ready for the operation right away.

Good. So, when I look at renal cell cancer we always think, can the outcome and prognosis differ depending upon the stage of the disease? Oh, definitely. Because usually we look at if they are stage 3, which means T3, 7 centimeters or above, as well as presence of lymph node involvement, that falls into the high-risk category. So we know that Steve had stage 4 disease, and it had gone to the liver as well as the lung. At that point we needed to do something to prevent the cancer from progressing very rapidly. So he elected to go for surgery because we know that kidney cancer has a lot of the immunological factors and angiogenic factors that drive the cancer. And if we can cut off that supply of these factors into the circulation, at least thereafter we could treat them with some of the novel agents.

So your outlook at that time pretty much changed when you came to know you were stage 4 disease. And basically, since you have gone through this and now you’re looking really good, do you have any practical advice for patients who are undergoing a diagnosis of renal cell cancer?

That’s a tough question because there’s so many different areas you can touch on. But whenever you go to the hospital you should be positive, never feel like a victim. That victim mentality just creates a negative flow in the body. So I went thinking I had kidney stones, I didn’t think it was a big deal. And when they diagnosed me, as they did, I still really didn’t blink because I’m such a positive person. I just stayed positive and I believed that whatever was going to happen was the way it was supposed to be. And as it happened, it was synchronistic because of how I ended up with you as a doctor.

For one thing I had a different doctor that was on my team who got called away for an emergency because of his wife. And they ended up having me with Dr. D’Silva, who part of what he does is research, and the other doctor was more old-school. So I probably would have been pushed into a different venue.

Kind of jumping ahead because the operation was pretty radical. It was a lot longer than they thought it was going to be, more involved, and more damage was done. They not only took the kidney, part of my liver, lymph nodes, other tissue; they went into the inferior vena cava, which ended up only being at 30% working order right now, which is a side effect from the operation. Nothing to do with the cure of the cancer itself other than it’s something I’m going to have to live with. And then after the operation is when I was introduced to you, and that was within a couple of weeks after the operation, correct?

Yes, it was basically one week after the surgery, Steve comes to my office.

In a wheelchair, and he was really sick, and I had to help him up to get on to the examination table, and he had also developed a large clot, so it was not easy. And I said, wow, this is not going to be easy to treat him. I said to him, “You need to recover from the surgery, and we’ll see how that happens.” Usually we wait about four weeks to start the treatment and decide what the frontline therapy is going to be.

Advice for Patients with RCC Choosing a Treatment Option

 Steve, when you met me we were deciding what the frontline therapy was going to be for you.

There was a lot of option because when I saw you, you came in a wheelchair, and then I wondered, wait a minute, his quality of life is not going to be good. He’s starting out moving in a wheelchair. He’s hardly able to get up and get on to the examination table, and I wanted to know how you were before you got this diagnosis. You had said to me that you were very active, and we were talking about clinical trials. So what was that that changed and how did you accept some of the recommendations?

When I first sat down with you, I asked you what the options were, and you told me all the options. But the one that made sense to me is the one that you were really keen on. I could tell just by the uplift in your voice, believe it or not, that you were pretty excited about the cabo [cabozantinib]. And I opted for that because you seemed so positive in the trials that had come forth. So right away I was leaning to that before we even finalized everything. And that’s why I asked you about all the different drugs and I was interested in the immunotherapy, but you kept going back to the clinical trials on the cabozantinib, which is why I knew you were so positive about how it had come through the clinicals.

 When Steve presented to me, he had really aggressive disease. His disease was spreading into the lung as well as the liver, and the retroperitoneal region. So my first concern is, if I’m going to give him immunotherapy, with an extensive disease it’s going to take some time for immunotherapy to work. Immunotherapy is great as long as you don’t have large volume metastatic disease and aggressive disease.

At that point, he presented to me in January, but somewhere late December, cabozantinib got approved. And one of the unique mechanisms of cabozantinib was it targets VEGF [vascular endothelial growth factor], AXL and MET. So we had seen that cabozantinib had a positive clinical trial result to when it was compared to sunitinib, and sunitinib was there for at least 10 long years as the first-line standard of care. But many of the patients developed activating resistance mutation with the AXL and MET, which was going to be targeted by cabozantinib. And I said to him, “I think the way you’re progressing, even after taking the kidney out, I think we need to use something that is going to give us immediate response. So I decided with him as a partnership, that we need to start this pill, and he was on board with it.

Yes, I’m the type of person that I’m into a lot of the newer style stuff. It’s really not new at all, it’s been around for tens of thousands of years, but I was always into holistic practices. I never went to the doctor, never had checkups. I was incredibly healthy. I was a 265-pound body builder, weightlifter. I did compete in power lifting when I was younger. And I did yoga, did a lot of ice skating, roller skating, all the sports with my son. And when I went to you I couldn’t even move. It was amazing. I just knew that the newer stuff that was coming out was a more viable and a better option for me. And like I say, I always went to holistic healers. I did massage therapies. I’ve always been in the chiropractor’s office. I still go every six weeks. I have been since the 1970s, and I was always afraid of the hospitals. And here they were, they just saved my life. When you spoke about the new research and everything, that was good.

Yes, because at that point Steve needed something to give him an immediate response, and cabozantinib had just gotten FDA approval, and it had beaten basically sunitinib, which was there for a long time.

That was only like two weeks after the operation I saw you.

And then, what happened? Five weeks later I got rushed to the hospital. The cancer went rabid, and it had spread to the outside of my pancreas, back into the liver.

Again, you know I wasn’t scared. I said, “Please stop the pain,” because the cancer on the pancreas was incredibly painful. It brought me to my knees. It was so painful that I just kept throwing up. It just, I’d never been in so much pain.

And he was admitted in the hospital, and my colleague, who was taking care of him on the inpatient service called me and he said, “What do you want to do with him?” I said, “He’s got the pill at his place at home. Tell him to start now because I do not know what we can expect. But at least we can start the treatment and see whether he’s going to respond or not.”

Yes, he came to me within a couple minutes after that phone call because they came in the next morning and he said, “You have to go home right now and start your medication,” which was surprising to me because I was in so much pain when I got there. So they put me on painkillers and helped relieve that pain. And they sent me home Saturday; I started that day.

Always there is a question whether patients should be a partner in deciding what the treatment options are and whether they can be involved in their care. And I said, “I want you to be a partner in the decision-making process. And because the data keep changing, you know better data comes by, but I wanted you to be informed. I wanted to be very transparent with you.” I think that was an important part in this decision-making process. What is your thinking about this shared decision making?

My father died of cancer, lymphoma cancer, different of course, but I watched the treatment he had and he just kept wilting away, and he just died. It looked like he was dying from day one. And me on the other hand I didn’t want to do that. I just didn’t want to go the old route. I didn’t think it was a good option for me. And I could tell from your positivity, that’s key for me too because I’m very positive. But I could tell just by the way you were talking that it was something that was on the front lines that was an option. I could tell and I knew, and I was excited.

Frontline Treatment Options for Stage 4 RCC

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?

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.

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?

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.

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.

So how did you overcome some of the side effects?

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.

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?

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.

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&mdash;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.

Undergoing Treatment: Cabozantinib Toxicity Management

By the middle of June I could tell that I was getting stronger. I could feel a difference, even though I kept losing weight. And the scale would tell me, every day I’d lose another pound, but I felt myself getting stronger and I felt the endurance starting to get better. September was key for us.

Right, because we were trying to get the second or the third treatment.

That’s when we made the decision on dropping that one day.

I knew, physically I could tell I was ready because I had upped my walking to about a mile. One time I walked a mile out and I couldn’t get back home, I had to call for a ride. I just pushed myself and went too far. But in September we decided to drop that one day. I knew the first two I missed that day, man I knew. It was amazing. It was like a switch went on, and I went right into the gym. That’s when I started pushing really hard. I remember when I sat with you in September and I said, “I was always a Type A personality, how do you feel about me pushing to the point of maybe throwing up in my workouts to being just so intense, how did you feel about me pushing that hard?”

Right. Because the dosage is 60 mg daily every day, and we gave him the full dose, and that was so impactful on his body because it basically melted his tumor pretty well. I remember the first CT [computed tomography] scan in three months, there was more than 70% reduction in the size of your tumor.

And then again in September, there was further reduction in the size of the tumor. I was feeling relieved. He felt that he could take one day off, and I said, OK, fine, why not if that’s going to make him happy. But the treatment was followed very strictly as per the clinical trials, and we definitely saw the results. And I’m glad to see you here actually because from the day you were diagnosed and now it’s almost one year, four months, you’re still on the drug and you’re doing very well.

How much do you weigh now? You’re over 200 pounds now.

Cabozantinib Dose Modification

One thing we always talk about is support network in renal cell cancer. I always talk to you, whether there are any health-oriented resources that can be available for our patient. I always tell you the jackpot of all information is from the government-sponsored resources such as cancer.gov, National Institutes of Health. We definitely see that this website provides high-quality accuracy and usefulness for patients like you, how they can improve their health and maintain their quality of life. As I said to you one day, we have a team of people, so whenever you walk into our cancer center, we want to have this multidisciplinary approach. Today, cancer is treated as a team sport, not as an individual sport. We’ve got financial counselors, social worker, even our therapist and nurse practitioner. What was your feeling at that time when you were getting so many calls from so many different people from our cancer center?

Not only that, I sought out even more information. Right from the beginning with Dr. Harras Zaid M.D., who was my surgeon, I made sure to speak at length with him. And any nurse, I talk to all the nurses because they’re hands-on, so they’re always good. I had the inpatient care. I had a palliative care nurse who was always at my house, my sister’s house, I should say. I was lucky because I had a lot of help. My sister and brother-in-law especially, they were there from the beginning. My sister cooked for me three times a day. I was lucky because they lived upstairs from a business. They had a business downstairs, so they were downstairs, I was upstairs, and she would come up and cook for her husband anyway. So she’d take care of me.

And a nurse would come visit me every week. We called your office many times. The nurse would always call and ask to make sure because there were always medication changes because we had to tweak the stomach medicine every week almost. Because the medicine, everybody knows how intrusive it is to the body. So you just hope that it does its job before it does its job on your whole body, right? But the side effect was my stomach. I was very lucky because I had heard about all the other side effects from cancer patients.

I really didn’t have many. It was the stomach issue and digestive system. So I was tweaking and changing my medication for the stomach all the time. There was always stomach pain, and I used tramadol as a painkiller for that, which is very mild. I didn’t want anything to affect the way I thought, so even after surgery when I woke up, I said, no, I’m not doing any of those painkillers because I wanted to be able to read and stuff. And you were close. Peabody is very close to where I live, so I would always go over and talk. It’s funny because I used to go in and visit the financial aid office woman all the time and talk to her. I don’t know if you guys knew that.

I’m a talker as you can tell. I don’t have a problem talking wherever I go. And it’s funny because now I even talk more because I know how important this story is to get out to the people. So, wherever I go, I just tell people, I give little hints that something’s up and they’d be like, “What do you mean?” Then I’ll get into it and I’ll explain to them what happened because it’s my story, but it’s an important story that people should know about.

Absolutely. You had such an aggressive cancer and you definitely responded so beautifully. I think that’s an important aspect.

I had a lot of help. Thank you so much because if it wasn’t for you, I don’t think I’d be here right now.

I think we have good medications today so that’s why we can offer it to our patients. Steven, one thing always comes to my mind is, and a lot of patients ask me, is complementary medicine, is it helpful in patients like you. I think I remember talking to you about speaking to our social worker, the therapist, as well as an acupuncturist. We have this massage therapy taking place in our cancer services, and I think those are a really nice adjunct to your treatment option. Did you use any of the services?

I have an outside chiropractor service that I have always gone to; I’ve been going to chiropractors since the 1970s. I had two herniated discs, so I’m a firm believer in that and massage therapy, and I have done acupuncture in the past but I didn’t this time. I stayed with meditation, of course all of the work that we did, and my chiropractor. By the way, there’s a lot to be said about meditation, about understanding that you do have control of your body, and your body will follow the way you think. If you think positive and you think your body to heal, it will actually follow suit. So from day one, I never had a victim mentality like why me or poor me. Talking to other doctors made me smile because they would always frown. I watched you close when I first met you, too, and we really didn’t get into that part yet. That was stuff we talked about later about how I am as a person.

But the initial team of doctors, I could see the frown on their faces, and tried to explain to them about how I was spiritually and that it was very important to me. And being positive is huge on the outcome of anything to do with the physical body.

Wow. So outside of our clinic, who played a role in supporting you during this treatment process?

The outpatient service. Through Lahey Clinic they had the nurses come in every week for me.

OK, the VNA [Visiting Nurse Association] services, yes. That’s nice. And plus from your family.

Yes. My sister had all the care stuff at her home because my mom died at home with my sister. We had all the tools necessary, so when I got sick, everything was there, the chairs, the walker, the arm cuff for blood pressure. She had everything in order too. It was amazing. I’ll tell you something, being alone, it easily could have gone the other way. But I was surrounded by so many people who were into helping me, that gave me confidence and kept me positive. It helped me a lot.

That’s good because it was important to keep that overall communication about your diagnosis and treatment with you as well as your family members. That’s what we aim for in the success of our treatment today.

The Impact of Support Networks & Multidisciplinary Care

So Steve, moving towards the future, what is the status of your journey now? How are you feeling and what do you expect?

After September, once I got back into the gym and I started exercising, I’ve really pushed hard. After we spoke, I told you I was going to push hard and you said there’s no reason why you can’t. My blood, every time I went to you, you told me how good my blood tests were. You said everything was perfect. So I’d go to the gym, I did an hour of yoga every day, well not every day. Every time I went, I’d go five days a week, and then I’d do an hour or two of working out, depending on what I was working out that day. Then I’d do aerobics. I got to where I was about 222 pounds, so I put on 30 pounds of muscle mass. My waistline kept getting smaller which was interesting. I didn’t think it could get any smaller than it was in September. Matter of fact, the suit I have on is a suit I bought in the ’80s. So that was pretty good. I put 30 pounds back on, and in February I called you up.

Actually, when I saw you, I told you I went back to work. I started work in February, back in the building trades, which is pretty strenuous. It’s on my feet eight hours a day, constantly physical. I don’t hang the sheetrock like I used to, that I love to do, but I’m doing all other facets of the building trade. We do commercial buildings. We build a lot of buildings like this. I worked February right up until last week, and we just finished three big jobs. I’ll tell you what, a couple days ago, it got beautiful out, and today and yesterday I felt as good as I’ve felt in years.

I don’t even feel like there’s any cancer in me. The only issue I have, of course, is with the inferior vena cava, which was damaged in the operation, which is separate. But other than that, I feel amazing, and the last couple of days I went to the beach. I went north up into New Hampshire and went up to the beaches. It was nice. It’s good to be back.

Yes, because the temperature went up to 80 [degrees].

Yes. I used to hike. I’ve been in almost every national park in the country. I’ve been in every state twice, and I’ve done a lot of the big hikes, and I’ve been out in the woods a lot. It was very important to me to be able to get back out there. I’ve actually done some small hikes, but the endurance is something I need to work on, absolutely.

Steve’s journey doesn’t reflect the standard patient experience. I think you definitely had a high-risk disease, but because of the novel agents like cabozantinib or any of the agents, we do not know what is coming in the future. But basically, with the modern therapeutics, we are able to understand some of the molecular markers of cancer, especially understanding the angiogenesis pathway, the mTOR [mammalian target of rapamycin] pathway, as well as the altered immune mechanism. I do think that we definitely have a bright future, and you have done so beautifully with the past one year, four months with this drug itself. Look at you, you’re looking great.

I do think that looking at your success, I have used this drug on quite a number of patients, and I’ve seen very good results. I think you are the poster child for me.

Does everybody else have, are they performing like I am?

They did not have such an aggressive disease, so they are doing well, yes. Like you were the first one, and they’ve just started some of them. Yes, they are doing very well, actually.

I’m very happy, actually. And you motivated me to make sure that other patients are also doing better.

Ten years ago, how often did something like this happen, somebody get cured like this? I never asked you this.

No, actually, I won’t say it’s a cure but control of the disease.

So basically, 10 years ago, there was only one drug, and it has been there for such a long time. But a lot of patients used to progress, and we were able to go back to find out why did they progress. And looking at newer drugs.

Yes. At that point, if you had gotten like nine months, 11 months [of response], you had a winner. But you did one of the best, actually, more than a year. So definitely cabozantinib was able to target some of the resistant mechanisms, which you see with other tyrosine kinase inhibitor like Sutent, where you could see activation of the AXL, MET, which cabozantinib was able to block. That’s why we were able to get more than one year of response.

If you think about it, it was six months. I mean, my best results were March to September.

Yes. But you had such an aggressive disease, widespread, you’re melting that tumor. That’s important for us, and then you want to stabilize it. So that’s what we were trying to do for you.

Now it is stabilized. The last CT [computed tomography] scan….

I’m a miracle man. I have a funny side note. My boss, when I went back to work in February, he introduced me to everybody as stage 4. He’d say, “Hey, John, this is stage 4.” And I’d go, no, you can’t call me that anymore, I’m miracle man. Now there’s all these people who don’t know my real name, they call me stage 4. That’s the truth, too.

So we always ask this question, how do patients need to be proactive in finding out information? I’m sure you must be looking to the internet and joining some kidney awareness group. Have you done that to find out more information?

No groups, but my whole life I read a lot; I mean I read a lot. When I was in college as a youngster back in the ’70s, I took genetics and human anatomy, physiology, and then I went back to college, and I took them again. I’ve taken a lot of psychology courses, and I’ve read a lot of books. I actually read a book in the ’80s called “Miracle Cures,” and it was people who were cured miraculously. I learned way back then about the power of thinking. I was like prepping myself way back then for now, and having the internet now, I mean who would have thought 30 years ago that we’d have the power we do at our fingertips? Any time when we spoke or any time I’d leave the office, I would go home and I would Google stuff. I was constantly online reading. My sister, every time I’d get back home, my sister would be on the computer and she’d tell me what would happen in our meetings because it was right at instant fingertips. I would go and I would Google stuff as we saw stuff that we weren’t sure about. So just having the internet at somebody’s fingertips, do yourself a favor, read everything, read as much as you can, absolutely. It’s important.

This is such an impressive story. Definitely, I feel so moved actually listening to you. I’ve been your doctor treating you, so that’s good. What would be your take-home message, your closing thought to patients, caregivers about your disease?

I’ve covered a lot of it already. My takeaway is to never be a victim. From the minute you are diagnosed with anything, it doesn’t matter what it is, be positive, be proactive, work hard. There were days when I couldn’t eat or drink, and I used some mental tricks. The easiest one for me was all I had to do was picture my son in my mind. I would say how is this going to help my relationship with my son, and that would make me drink that water because I knew how important water was to survival. And there were days when I didn’t want to drink water. And eating, there’s no flavor to food when you’re sick, and I would force myself to eat, and I would use every trick in the book to just do everything that’s necessary. Listen to the doctors. And seriously, read everything about whatever it is you have, especially cancer. There’s a lot of information.

Yes. I’ve seen the health care providers and the team. They work tirelessly to make sure to help patients in this stressful environment. And I think as long as we have the participation of patients and their families in our decision-making process, we can really move forward into getting better treatment options for our patients with kidney cancer.

Thank you so much for joining Steven and me with 

 in the diagnosis and treatment of renal cell carcinoma.

Overcoming the Odds: Steven's Journey with Stage IV RCC | CURE^® Expert Connections

The Diagnosis of a Patient with Stage 4 Renal Cell Cancer

Advice for Patients with RCC Choosing a Treatment Option

Frontline Treatment Options for Stage 4 RCC

Undergoing Treatment: Cabozantinib Toxicity Management

Cabozantinib Dose Modification

The Impact of Support Networks & Multidisciplinary Care

The Typical Prognosis of Aggressive Renal Cell Cancer

Latest News

Overcoming the Odds: Steven's Journey with Stage IV RCC | CURE® Expert Connections

The Diagnosis of a Patient with Stage 4 Renal Cell Cancer

Advice for Patients with RCC Choosing a Treatment Option

Frontline Treatment Options for Stage 4 RCC

Undergoing Treatment: Cabozantinib Toxicity Management

Cabozantinib Dose Modification

The Impact of Support Networks & Multidisciplinary Care

The Typical Prognosis of Aggressive Renal Cell Cancer

Latest News

Overcoming the Odds: Steven's Journey with Stage IV RCC | CURE^® Expert Connections