Rich's Experience
He had hoped to make the most of his remaining years; instead, he was immobilized by pain and swelling
I was diagnosed with kidney cancer in December of 2022.
A couple months later, they removed my right kidney. They didn’t recommend any further treatment at that time, believing that the tumor was encapsulated enough that it wouldn’t be a threat.
I was relieved to have cancer behind me and grateful that I’d still have my retirement years to spend with my family. With the gift of hindsight, I had come to realize what I had missed out on over the years by putting my career before spending time with my family. Now in retirement, I’ve been determined to make up for lost time.
But a little less than a year and a half after my kidney removal, the cancer returned, and it was in one of my adrenal glands.
They removed the adrenal gland, and about six weeks after the surgery, I had my first infusion with pembrolizumab (Keytruda). Side effects weren’t really on my mind at the time. When we were talking about the medication, side effects had been presented at a very high-level, like something that very rarely happened. There was no in-depth conversation about how bad they could be, and I had no idea that they could turn into an autoimmune condition that lasts forever.
I imagined I’d be able to keep up my normal routine of taking care of my grandkids – getting them ready for school and on the bus each morning, attending sports events, taking them on outings.
The first couple treatments went relatively well. I had a pretty significant rash and chills, but I thought, “Okay, if it doesn’t get any worse than this, I can handle it. I can make it through.”
Editor's Note
Each patient responds to immunotherapy treatments differently. Since each person’s immune system is unique, it’s impossible to predict how each patient will respond. What’s important is to be aware of the risk and be prepared to advocate for specialized care if you do experience side effects.
Things Get Worse
After the third treatment, though, things started to change pretty rapidly. It started to attack my major joints, my knees, my ankles. The swelling was unbelievable. I ended up cutting slits in my shoes so I could get my feet into them.
When I talked to my oncologist about it, he said that some of these reactions were normal. He prescribed some steroids. They helped with the swelling and helped somewhat with some of the pain, but within 36 hours of the prescription being depleted, I was right back where I started and sometimes worse.
By the time I got through the fifth treatment, I was almost immobile. I had started to use crutches to get around. I could no longer attend my grandkids’ sporting events or activities. I couldn’t even dress or feed myself. I was totally reliant on my wife, and I don’t know what I would have done without her.
I talked to my oncologist about what I was going through, and, though I think he’s a very bright man, I don’t think he was really listening to me. He referred me to an orthopedist, who took X-rays of my left knee. I had already known, even before the cancer, that my knee needs to be replaced, but I knew that wasn’t what was causing this problem.
important reading about side effects
Side Effects 101: Learn how side effects of immune-related cancer treatments are unique and how to best approach them.
Go Deeper: Learn about side effects from immune checkpoint inhibitors and how their resemblance to autoimmune conditions can be the key to treating them.
By the time I got to the sixth treatment, things deteriorated pretty rapidly. I couldn’t raise my hands over my head. My hands were swollen like paddles. I couldn’t answer my cell phone. I couldn’t text my children.
I couldn’t do anything but sit in a chair, 24 hours a day. To use the restroom, my wife and I devised some makeshift gadgets to help me get up, and then she would get me to the to the bathroom. She would get me on and off the toilet, which was something I didn’t think I would ever have to put her through, frankly.
It worsened to the point that one evening, when my steroids had run out and I could feel it coming on again, I told my wife, “I think I can shave, and I think I better do it tonight because I’m not going to be able to move tomorrow.” She helped me into the bathroom. I shaved. By midnight that night, I was completely immobilized again and in more pain than I have words to explain.
The pain was such that when my wife would try to help me and dress me, I would literally scream. I’ve never felt such intense pain. And I have a very high tolerance for pain. After both the surgeries, I had taken just one pain pill. Pain just doesn’t usually affect me that greatly, but this did.
I ended up being admitted to the hospital. I was there for three days, and they ran various tests. They sent the hospital rheumatology team in, and they prescribed some medications that I was given intravenously. I felt pretty good fairly rapidly with the intravenous treatments. When I was released from the hospital, they gave me a referral to a rheumatologist.
A Light at the End of the Tunnel
When I saw the rheumatologist and explained the whole story to her, it was the first time I felt like somebody was hearing what I had to say. She asked me how I was feeling, and, not to be vulgar or crude, I told her, “I’m pissed. I’ve never been this angry in my life.”
The way my oncologist had reacted to my side effects made me feel like I was the only person experiencing this. But my rheumatologist assured me that I wasn’t alone; there are other patients who have these kinds of side effects, and there are ways to treat them.
She started the process of tapering me off of steroids and prescribed some medications used for rheumatoid arthritis. I could feel the difference these medicines made, and for the first time in two months, I felt hope, like I could finally see a light at the end of the tunnel. But it was a long tunnel. I had lost over 35 pounds in two months, and a lot of it was muscle mass, so recovery was slow. But I worked hard at it and got myself from a wheelchair to crutches, and then, eventually, a cane.
About six weeks after starting the medications, I was able to get back to being grandpa – getting the kids ready for school and cheering for them at their sporting events.
Rich with his wife, Vicki, and their grandchildren
Reflecting on My Journey
I’m able to enjoy my life again, but I have to tell you, I still get angry when I think about what we had to go through to get help.
These immunotherapy drugs are rolling out so quickly that there hasn’t been enough time to figure out how to tackle the side effects. While there is some understanding of what the side effects are, they don’t affect any two people the same.
And that’s why I think more emphasis needs to be on really listening to patients. Patients know their bodies. And when they tell you something, they’re not telling you because it just makes them feel good to vent. They’re telling you because they’re looking for help. I was looking for help.
And some people did help us – and I’m very grateful. I think of the two oncology nurses who helped my oncologist understand the extent of my side effects and consistently advocated for me. When I couldn’t make contact with my oncologist directly, the nurses would go out of their way to reach out to me just to see how bad it was and then advise me what course to take. I’m not sure where I would have been had it not been for those nurses. The courage they showed is not something you see every day. It had a tremendous impact on me, and even more so on my wife who really was really struggling trying to sort all this out.
The prognosis my doctors gave me, even with treatment, was three to five years. I’m hoping for the five. I’m not afraid of dying, but I do think about the things that I’ll miss. I have grandkids ranging in age from 4 to 20, and I’ve had to come to the realization that there are certain events in their lives I just won’t be here for. So, I want to spend as much time with each and every one of them as I can while I’m still here. It’s not so much the places and things I want to see. It’s that I want to experience those things with them. I want to create those memories. Because that’s how you stay alive, in a sense.
You can see Rich share his story with an audience here.
Rich has been married to his wife Vicki for over 50 years and is a father of four children and a grandfather to six grandchildren ranging in age from kindergartener to college graduate. Now retired, Rich loves to spend his time with his wife and family, introducing his grandchildren to new experiences and creating memories together.
Details of Rich's Case
Cancer Type
Kidney
Immune-Related Treatment Type
Immunotherapy
Immunotherapy Side Effects Experienced
- Skin reactions (recurrent rashes, itchiness, sores, thinning of the skin)
- Diarrhea
- Fatigue or exhaustion
- Joint/bone pain or swelling
- Mobility issues (stiffness, weakness)
- Dry eyes
- Extreme weight loss
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