Andrew Allers survived kidney cancer | yervoy | opdivo | IVIG | prednisone | nephrectomy | vena cava
- 13 hours ago
- 13 min read
In 2015, Andrew Allers was hit and fell while competing in a soccer match. He immediately sought medical attention. and a CT scan revealed a baseball-sized tumor on one of his kidneys, which led to a diagnosis of Stage III renal cell carcinoma, or, kidney cancer. A radical open-assisted nephrectomy removed the entire cancerous kidney. Andrew thought he was in the clear, but in 2019, he was diagnosed with Stage IV kidney cancer. Not only that, but the cancer had spread to his bones and his brain. However, all of the above was successfully treated with an immunotherapy regimen, including ipilimumab and nivolumab. Physically, Andrew considers his health at about 65 percent of what it was pre-diagnosis, but his cognitive skills are just as sharp as ever.
Andrew Allers led an active lifestyle in 2015. From suburban Connecticut, he commuted to his job on Wall Street, but still found the time and energy to compete in an over-40 soccer league. It was during a match that he took a hit, fell on his side. Not only did he think he had broken a rib, but there was blood in his urine. He went to the emergency department. A CT scan was ordered, and it revealed a baseball-sized mass on his kidney. Andrew was referred to a urologist, who checked out the scan and told Andrew he had Stage III kidney cancer.
A radical open-assisted nephrectomy was performed to successfully remove the cancerous kidney. However, just two years later while playing tennis, he felt a pain in his back. A biopsy was performed and Stage IV kidney cancer was indicated. In addition, Andrew underwent a bone scan which revealed a tumor in his left hip socket. It was radiated immediately, but to be safe, he was put on an immunotherapy regimen with two agents, ipilimumab and nivolumab. Side effects included a full body rash and muscle aches making it difficult to make up and down stairs. The immunotherapy was supplemented with a rheumatological drug, IVIG, or intravenous immunoglobin. A few months later, his tumors had shrunk measurably.
There was yet another issue for Andrew. He experienced problems with his left field of vision, and underwent a CT scan, which he had a pair of brain tumors. For that he underwent a successful surgical procedure in May 2020.
These days from a physical perspective, Andrew Allers says his health is about 65 percent of what it was before his soccer accident. His biggest setback is that he can no longer run. He says his cognitive skills have not suffered and that his mental health is better than ever.
Additional Resources:
Support Group:
The Kidney Cancer Association https://www.kidneycancer.org
Patients Stories Andrew has written for The Kidney Cancer Association:
TRANSCRIPT
Bruce Morton: Good day. This is the @CancerInterviews podcast, and I am your host, prostate cancer survivor Bruce Morton. What began as an accident in a soccer match became a diagnosis of Stage III kidney cancer and then years later became Stage IV. But he is here and ready to provide an eloquent recitation of his journey. He is Andrew Allers of Wilton, Connecticut, and now is the time to hear his story. Andrew, welcome to Cancer Interviews.
Andrew Allers: Thank you for having me and I hope I live up to your expectations.
BM: Before we get to your journey, we would like to learn more about you and your life away from cancer. If you would, briefly tell us about where you are from, what you have done for work and what you like to do for fun.
AA: I grew up in Boise, Idaho, left when I was in my twenties to go to college, went University of Washington in Seattle, then graduate school in Delaware, I got a Dh.d in applied math and sort of found my way to Wall Street in the early nineties when there weren’t too many with a Ph.D in math. I moved all around, worked in New York, Philadelphia, Dublin, Ireland for a while, then we settled in Connecticut, where I worked on Wall Street for 25 years. As a result of the cancer, I retired in 2022. I found it was difficult to maintain a fulltime job and take care of myself.
BM: Your cancer journey began in a way that is not normally associated with cancer. Tell us about it.
AA: Yeah, it’s interesting. We have two kidneys and they are very efficient, so kidney is often diagnosed in a late stage because the other kidney picks up the slack. Anyway, I was playing in a fairly-competitive, over-40 soccer game in Connecticut. I got hit, knocked on the ground on my right side. It hurt quite a bit, thought I had broken a rib. Later in the day there was blood in my urine, thought I had bruised a kidney, went to the ER and there was a baseball-sized tumor in my kidney, which we would have eventually found out. It was starting to grow in the vein that was leaving the kidney. It was very fortuitous that we found out then, because if we had found out six months to a year later, it could have been much worse. That was my introduction to kidney cancer, but there were no blood tests and kidney function was fine because of the other kidney.
BM: Now, what was the chain of events that led to your diagnosis?
AA: I was sure I had broken a rib because there was so much pain. I went to the ER, got in quickly, x-rays should no broken bones which I found difficult to believe. They ordered a CT scan, the ER doctor came back in and he clearly did not want to say the ‘C’ word. He said they had found a mass, sort of described as the size of a tangerine. In reality it was the size of a baseball. He just didn’t want to say it. I asked him what could it be? He was very hesitant to name anything. Then I asked if it could be cancer and he said yes. Finally, the thoracic surgeon came in and said I almost for certain had kidney cancer, and would refer me to a urologist to get it removed sooner than later, and I will probably be fine. That’s how we found out one afternoon and my changed quite a bit.
BM: By the way, we hope you will find time to like and subscribe to our channel. And if you click on the bell icon, you will be notified anytime we post an interview. We also want to remind you that on Cancer Interviews, we are not providers of medical advice. If you or a loved seek medical advice, please contact a licensed healthcare professional.
Part of the chain of events that took place around the time you got your diagnosis was what is referred to as a radical open-assisted nephrectomy. What is it?
AA: The nephrectomy is the removal of a kidney. Radical means the entire kidney, otherwise it would be partial. Open-assist means they open the whole cavity up and the reason they did that is because the cancer was starting to grow along the vein that leaves the kidney and joins the vena cava. There was a vascular surgeon there for the procedure and they wanted access in case how far up the vein they had to go to remove it. So, they opened me up pretty radically. In the end, the doctor they said probably could have done with laparoscopic, but now I have a big scar and I can make up stories about it.
BM: Once the kidney removal was complete, there was a treatment regimen. It consisted of what?
AA: Interestingly, in my regimen after that, it consisted of scans. All the tissue they took out around the kidney, which included one lymph node, it appeared as though the cancer was contained in what was removed, the kidney and the connecting vein. As such, there was no discussion of any treatment that would go on. All this was based on the standard of care in 2015. I don’t think any of the treatments we have now were available then. I was told I would get a scan every three months for a while, then every six months, then maybe a year. Then the magical date is always five years. That is the date you always sort of look for. I didn’t even see an oncologist. I just followed up with my regular scans.
BM: That was Stage III in 2015, but your cancer returned in 2019. What tipped you off that the cancer had returned?
AA: That’s a very good question. So, in 2017, I was playing tennis and I hit an overhead and something came apart in my back. I underwent a scan with my urologist who said I might have a fracture in my back or your rib. I said I was playing tennis. At that time I didn’t read my own scans. Now I read them religiously. In scans there is an item-by-item section, then there is a summary at the end called the impression. In the item-by-item section, it read, “Possible healing from pathological fracture and concern for metastatic disease.” In the summary. , it said the same thing but without “concern for metastatic disease.” My urologist didn’t say anything, and I was sure he didn’t read the item-by-item and just looked at the summary. It wouldn’t be another year until my next scan and this thing is about the size of my thumb. Now it was visible and he ordered a biopsy and it was confirmed it was renal cell carcinoma Stage IV, which has migrated to the bone. It was described as the escape of some cells. They had found a home in my rib and fractured the rib and just continued to grow. It was a long chain of events from 2017 to 2019, in which I think it should have been diagnosed sooner, but wasn’t. The official diagnosis was in June of 2019.
BM: This was Stage IV and you had said it metastasized to the bones. Every guest we have had that has said they had cancer in the bones has said that is extremely painful, but beyond that, the cancer had moved to your brain. What were the difficulties that accompanied that, as I suspect they wer quite severe?
AA: There is a progression, so in 2019, I had a brain MRI, which was clear and a bone scan which revealed a lesion or a tumor in my left hip socket. Those two were radiated immediately. There was no other evidence of cancer in my body, but to be safe I was put on an immunotherapy regimen with two particular immunotherapy agents, ipilimumab and nivolumab. They are both immunotherapy agents, designed to teach your immune system to attack the cancer. One of them is that cancer uses an ‘off’ switch on some of the immune cells, so that the healthy cells say, “Don’t attack me, I am supposed to be here.” Cancer can sort of co-opt that circuitry, but the immunotherapy breaks that chain so the cancer cannot masquerade as healthy cells. I started those in August of 2019 and in two treatments my body kind of went off the rails. I had a full body rash, I could barely walk up or down stairs. I had all sorts of muscle aches. It turned out a previous autoimmune disease which sort of lived underneath the radar until there was this immunotherapy ramping up my immune system. This is the fall of 2019, so I come off these two immunotherapy agents and most people who have autoimmune diseases don’t get to do the immunotherapy when they have a reaction like mine. I had a very ambitious rheumatologist and oncologist who were both open to new ideas. Immunotherapies were still fairly new at the time, so I immediately went on prednisone steroids to calm the effects down. Then I spent the fall and winter tapering down the steroids while my rheumatologist came up with an idea. Her idea was to use a rheumatological drug called IVIG, or intravenous immunoglobulin, healthy antibodies from donor blood that do not have the over-excitability that my antibodies have. The theory being this IVIG can modulate my immune system reaction while still allowing the immunotherapy to do its job. She couldn’t find any research papers about it, but she had an idea. So, I tapered down the steroids, and started taking the IVIG. By January of 2020, I was able to go back on the nivolumab and IVIG, and I have been on that ever since. That seems to be working, because in a few months, my tumors and lymph nodes in the lungs had shrunk measurably. The doctor was very pleased. Marked improvement. I thought this was great. I was one of those benefitting from the immunotherapy, but a month later I had a very strange vision issue where I couldn’t resolve things well in my left field of vision. This was full COVID at the time, so my wife dropped me off at the emergency room in May of 2020, wasn’t allowed to come in with me. I was checked in at 10:00 o’clock. By noon, I had a CT scan, and by 2:00, I was told I had two brain tumors. One was in the occipital lobe, which processes vision and creates what you see. The one on the right creates what you see in your left field of vision. That’s when the horror took hold. This was my brain. I studied math in school, I loved to think, I loved to solve problems. That was the scariest part for me, as I wondered, “Am I going to be me anymore?”
BM: Andrew, looking at you now, you look like the picture of health. So, at some point you had to advance past Stage IV toward survivorship. When did you sense that things were moving in the right direction?
AA: It feels there were many of those places. First, there was when my kidney came out and I thought I was going to be fine. When I learned the cancer had spread to my bones, I had it radiated and I thought I was going to be fine. Then we had overreaction and we dealt with that. Then in 2020, I had the immunotherapy, the IVIG, I am going to be fine. In May of 2020, brain surgery, days later, home and cooking for my family, I am going to be fine. I have a childlike sense of optimism. Every stage it felt like there were a lot of terrible things that had happened, but every stage we fixed it and now I’m fine. I know deep inside I am not fine, I know this thing is still here. I am more likely to die from this than anything else. I know that, but every time something comes up, we deal with it. I have written about the power of having a plan. There are two types of worry. They are ‘Am I going to be okay?’ and ‘What do I do right now?’ Over the long history of this disease, I have to not worry about the first fear because nobody can answer that. Nobody can tell me if I am going to be okay. Nobody knows. What I can do is focus on a plan and maximize my energy toward focusing on a good outcome and then just not worry about the outcome after that. I say that like it’s easy. It’s not, but that is always my mantra.
BM: Andrew, you’re a numbers guy, so I am going to ask you to do some quantifying. If we could say your health was 100 percent at the time of your soccer mishap, these days, physically and mentally, how close are you to 100 percent?
AA: That’s a great question. I would say I am probably 65 percent. For instance, I cannot run anymore. I had radiation on my hip, which harmed the nerves on my left leg. That makes me very sad when I think about it, so I try not to think about it. Strength-wise, I am nowhere near where I was. I don’t think anything has happened to me cognitively. In terms of mental health, I actually think I am in a better place now. I have internalized what’s important, which is ‘now.’ I hear a lot of cancer patients say, ‘I want my life back,’ and what I have realized is this is my life, so I am going to embrace it and I am going to enjoy it. ‘Old me’ is gone. I have grieved ‘old me,’ and I try not to spend time thinking how can I get back to my life. What I try to do is look forward to see what is my new life. It’s a tough question to answer.
BM: Andrew, we are going to wrap up and we are going to finish with pretty much the same question we have for all our survivor guests. If you encountered someone freshly diagnosed with kidney cancer, this person might have a lot of questions for you, and you a lot of answers; but if there was one thought you wanted to make sure that individual took with them when your conversation concluded, what would it be?
AA: Don’t catastrophize all the bad outcomes. Wait for things to happen and deal with them as they come, especially with side effects. People always say, “Oh, I just started Medication ‘X.’ What should I be on the lookout for?” I tell them to wait and see what happens. You can plan, you can worry, but it is only useful to think about the things that are happening, not the things that might happen. It just doesn’t make sense to worry about things that haven’t happened and might not happen. I realize that is impossible, especially when you are freshly diagnosed, but I hope that is the thing that people would internalize the fastest. That is what has helped me the most.
BM: He is Andrew Allers of Wilton, Connecticut. He has survived Stage IV kidney cancer and he has shared with us a tremendous story. Thanks so much for being with us on Cancer Interviews.
AA: Thanks so much. Hope to talk to you again sometime.
BM: Excellent. And we want to remind you as we always do when we conclude that if you or a loved one are on a cancer journey, you are not alone. There are individuals out there like Andrew Allers who can be a source of information and inspiration. So, until next time, we’ll see you on down the road.
Additional Resources:
Support Group:
The Kidney Cancer Association https://www.kidneycancer.org
Patients Stories Andrew has written for The Kidney Cancer Association:
SHOW NOTES
TITLE: Andrew Allers, Stage Four Kidney Cancer Survivor – Wilton, Connecticut, USA
In 2015, Andrew Allers was hit and fell while competing in a soccer match. He immediately sought medical attention. and a CT scan revealed a baseball-sized tumor on one of his kidneys, which led to a diagnosis of Stage III renal cell carcinoma, or, kidney cancer. A radical open-assisted nephrectomy removed the entire cancerous kidney. Andrew thought he was in the clear, but in 2019, he was diagnosed with Stage IV kidney cancer. Not only that, but the cancer had spread to his bones and his brain. However, all of the above was successfully treated with an immunotherapy regimen, including ipilimumab and nivolumab. Physically, Andrew considers his health at about 65 percent of what it was pre-diagnosis, but his cognitive skills are just as sharp as ever.
Additional Resources:
Support Group: The Kidney Cancer Association https://www.kidneycancer.org
Time Stamps:
01:43 Andrew’s cancer journey began with a soccer mishap.
03:00 Recalls what led to his cancer diagnosis in 2015.
06:06 Describes his treatment regimen.
08:56 Says his kidney cancer returned in 2019.
11:23 Andrew said his cancer spread to his brain.
18:45 Is asked when he sensed he was moving toward survivorship.
26:17 His advice for others diagnosed with kidney cancer.
KEYWORDS (tags):
kidney cancer
renal cell carcinoma
immunotherapy
ipilimumab
yervoy
nivolumab
opdivo
prednisone
IVIG
intravenous immunoglobin
occipital lobe
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