JELMYTO® Treatment for Upper Tract Urothelial Carcinoma and Lynch Syndrome: Patient Journey and Innovative Therapy - Michael Miller
June 1, 2023
Zach Klaassen, a urologic oncologist, discusses upper tract urothelial carcinoma treatment with JELMYTO® and Lynch syndrome with his patient, Michael Miller. Mr. Miller shares his journey with Lynch syndrome, a genetic condition that increases the risk of various cancers, including colorectal, kidney, upper tract urothelial carcinoma. He discusses his previous experience with colorectal cancer and the treatments he underwent, including chemotherapy and surgery. Dr. Klaassen explains the context of Mr. Miller's upper tract urothelial carcinoma treatment diagnosis and the decision to use JELMYTO® for his care. JELMYTO® is a targeted therapy that involves a series of weekly infusions. Mr. Miller compares his experience with systemic chemotherapy to JELMYTO®, highlighting the differences in side effects and convenience. They also discuss the logistics of administering JELMYTO® through a percutaneous tube and the ease of living with it compared to other surgical interventions. Mr. Miller expresses his gratitude for the support and excellent care he received from the medical team.
Biographies:
Michael Miller
Zachary Klaassen, MD, MSc, Urologic Oncologist, Assistant Professor Surgery/Urology at the Medical College of Georgia at Augusta University, Georgia Cancer Center
Biographies:
Michael Miller
Zachary Klaassen, MD, MSc, Urologic Oncologist, Assistant Professor Surgery/Urology at the Medical College of Georgia at Augusta University, Georgia Cancer Center
Read the Full Video Transcript
Zach Klaassen: Hi, my name is Dr. Zach Klaassen. I'm a urologic oncologist at the Georgia Cancer Center, and I'm with one of my patients today, Mr. Michael Miller, who has been gracious to join us today to discuss not just JELMYTO® for upper tract urothelial, but really to touch on Lynch syndrome as well.
So why don't you tell us about your journey with Lynch syndrome up until now?
Michael Miller: Well, the funny thing is, I didn't know I had Lynch syndrome until I was... I already had colorectal cancer and then I was diagnosed with kidney cancer and my urologist said, "Do you know anything about Lynch syndrome?" I said, "No."
So he sent me over here to Dr. Henson and I got tested and I found out I did have Lynch syndrome. And what that is there is identified 10 different type of genetic markers, and I happen to have one.
Zach Klaassen: Right.
Michael Miller: And that makes me susceptible to colorectal cancer, kidney cancer, pancreas cancer, liver cancer, brain cancer, and breast, believe it or not.
Zach Klaassen: And so you've been through... This is upper tract urothelial is not your first cancer that you've dealt with, right?
Michael Miller: Right. That's correct.
Zach Klaassen: Tell us about what you've gone through, if you don't mind, before we met for the upper tract.
Michael Miller: Well, the colorectal cancer, I was diagnosed with that in December of 2016.
January the third, 2017, they removed 30 inches of intestine from my anus up, and they also removed 13 lymph nodes. One of the lymph nodes came back as cancerous.
So I started on the chemotherapy and it started February. They inserted a port and then about a week afterwards, that's when I started my chemotherapy.
The chemotherapy consisted of the infusion and then normally took about five hours sitting in a chair and you would get a whole plethora of different things from saline to the chemo to something to help with nausea. And then I would run two weeks with pills. And then I'll have one week off, and then the cycle will start again. I had eight sessions of the infusion and they fitted me with a ileostomy to help my intestine to grow back.
So after July, that was the last infusion I had. After July, they did the reversal in August, and that was the end of that. Then what I would have to do for the profile was I would get a CAT scan every six months, and it was the last CAT scan that I had in July of 2022 that discovered the kidney cancer.
And that's what led me here.
Zach Klaassen: So let's fast-forward to that.
So take us through our conversations from a patient perspective discussing kidney removal, how the context of that fits into your diagnosis, and ultimately how we decided to go with JELMYTO® for your care.
Michael Miller: Well, the urologist that discovered it said, "Okay, I'm going to have to take your kidney all the way down to your bladder." But because I had to have hernia surgery from all the other surgeries, he didn't want to touch me. It was too complicated. So he sent me to you guys.
Zach Klaassen: Right.
Michael Miller: And the doctor that saw me there said, "Okay, we're going to do JELMYTO® because your cancer is low, low, low grade," and with the JELMYTO® you have to do is have a urostomy tube put in your back and it will consist of six infusions once a week. And the infusions only took five to 10 minutes. And compared to what I had to go through before, it was completely night and day.
Zach Klaassen: And I think that's important for not just the physicians that are watching this, but also the patients, talk about that difference between systemic therapy, which you had for the colorectal cancer to the JELMYTO®, which is really a targeted therapy.
Michael Miller: That's one thing that I enjoyed was the fact that the think of the ingenuity that went into JELMYTO® was completely different than the chemotherapy I had.
The side effects that I had with chemotherapy was if you drank anything cold, it was like you were swallowing needles. And I lost the feeling in my hands and feet. Matter of fact, the dexterity left my hand and this was at the sixth infusion. See, I used to be able to do the Vulcan peace sign. Yeah, can't do it anymore.
Zach Klaassen: Tell us about the... So there's several ways to put the JELMYTO® in the trial that was done a couple years ago. A lot of it was done retrograde. So a catheter would go up into the ureter and it would be injected.
And so from a logistical standpoint, the real world now, a lot of us will do the pec tube because it's only... It's like going to sleep every time we got to put it in. You can go straight to the infusion center and get it done.
Talk to us how living with that perc tube was for that six to eight weeks or so
Michael Miller: Compared to the ileostomy I had?
Zach Klaassen: Yeah.
Michael Miller: It was nothing. Yeah, it was absolutely nothing. I could bathe just about every day if I wanted to. And all we had to do was just tape up the tube. That's it.
Zach Klaassen: Yeah.
Michael Miller: Now with the ileostomy, if I got it wet... you like hot showers, right?
Zach Klaassen: Of course.
Michael Miller: I like hot showers.
Zach Klaassen: Yeah.
Michael Miller: You have a hot shower with the ileostomy-
Zach Klaassen: It's coming off.
Michael Miller: And the plastic bag that you have to poop in-
Zach Klaassen: Yeah.
Michael Miller: Comes right off. And compared to what I did with the tube, we had the special adhesive that we got from the pharmacy, they put it over the tube. That was it.
Zach Klaassen: That's great.
And we've had a couple of scopes since then. Everything looks great. We're going to get another MRI coming up in a couple of months.
Anything you want to tell our listeners that we haven't touched on just in terms of your experience with JELMYTO®?
Michael Miller: Tell you the truth, I can't express enough how the people here have really made this the easiest possible treatment I've ever received. The people over at, is now Piedmont, the people over at Piedmont was very good. But here, the two nurses that worked on me was Marsha and Stacy, and they were terrific.
Zach Klaassen: Awesome. That's great.
Michael Miller: And that plus, how easy it was to get this treatment, that makes it a whole world of difference.
Zach Klaassen: It's outstanding.
Well, thank you very much for joining us here. Your input from a patient perspective is invaluable, so thank you very much.
Michael Miller: Thank you, sir.
Zach Klaassen: Thanks.
Michael Miller: Thank you for helping me.
Zach Klaassen: Thank you.
Zach Klaassen: Hi, my name is Dr. Zach Klaassen. I'm a urologic oncologist at the Georgia Cancer Center, and I'm with one of my patients today, Mr. Michael Miller, who has been gracious to join us today to discuss not just JELMYTO® for upper tract urothelial, but really to touch on Lynch syndrome as well.
So why don't you tell us about your journey with Lynch syndrome up until now?
Michael Miller: Well, the funny thing is, I didn't know I had Lynch syndrome until I was... I already had colorectal cancer and then I was diagnosed with kidney cancer and my urologist said, "Do you know anything about Lynch syndrome?" I said, "No."
So he sent me over here to Dr. Henson and I got tested and I found out I did have Lynch syndrome. And what that is there is identified 10 different type of genetic markers, and I happen to have one.
Zach Klaassen: Right.
Michael Miller: And that makes me susceptible to colorectal cancer, kidney cancer, pancreas cancer, liver cancer, brain cancer, and breast, believe it or not.
Zach Klaassen: And so you've been through... This is upper tract urothelial is not your first cancer that you've dealt with, right?
Michael Miller: Right. That's correct.
Zach Klaassen: Tell us about what you've gone through, if you don't mind, before we met for the upper tract.
Michael Miller: Well, the colorectal cancer, I was diagnosed with that in December of 2016.
January the third, 2017, they removed 30 inches of intestine from my anus up, and they also removed 13 lymph nodes. One of the lymph nodes came back as cancerous.
So I started on the chemotherapy and it started February. They inserted a port and then about a week afterwards, that's when I started my chemotherapy.
The chemotherapy consisted of the infusion and then normally took about five hours sitting in a chair and you would get a whole plethora of different things from saline to the chemo to something to help with nausea. And then I would run two weeks with pills. And then I'll have one week off, and then the cycle will start again. I had eight sessions of the infusion and they fitted me with a ileostomy to help my intestine to grow back.
So after July, that was the last infusion I had. After July, they did the reversal in August, and that was the end of that. Then what I would have to do for the profile was I would get a CAT scan every six months, and it was the last CAT scan that I had in July of 2022 that discovered the kidney cancer.
And that's what led me here.
Zach Klaassen: So let's fast-forward to that.
So take us through our conversations from a patient perspective discussing kidney removal, how the context of that fits into your diagnosis, and ultimately how we decided to go with JELMYTO® for your care.
Michael Miller: Well, the urologist that discovered it said, "Okay, I'm going to have to take your kidney all the way down to your bladder." But because I had to have hernia surgery from all the other surgeries, he didn't want to touch me. It was too complicated. So he sent me to you guys.
Zach Klaassen: Right.
Michael Miller: And the doctor that saw me there said, "Okay, we're going to do JELMYTO® because your cancer is low, low, low grade," and with the JELMYTO® you have to do is have a urostomy tube put in your back and it will consist of six infusions once a week. And the infusions only took five to 10 minutes. And compared to what I had to go through before, it was completely night and day.
Zach Klaassen: And I think that's important for not just the physicians that are watching this, but also the patients, talk about that difference between systemic therapy, which you had for the colorectal cancer to the JELMYTO®, which is really a targeted therapy.
Michael Miller: That's one thing that I enjoyed was the fact that the think of the ingenuity that went into JELMYTO® was completely different than the chemotherapy I had.
The side effects that I had with chemotherapy was if you drank anything cold, it was like you were swallowing needles. And I lost the feeling in my hands and feet. Matter of fact, the dexterity left my hand and this was at the sixth infusion. See, I used to be able to do the Vulcan peace sign. Yeah, can't do it anymore.
Zach Klaassen: Tell us about the... So there's several ways to put the JELMYTO® in the trial that was done a couple years ago. A lot of it was done retrograde. So a catheter would go up into the ureter and it would be injected.
And so from a logistical standpoint, the real world now, a lot of us will do the pec tube because it's only... It's like going to sleep every time we got to put it in. You can go straight to the infusion center and get it done.
Talk to us how living with that perc tube was for that six to eight weeks or so
Michael Miller: Compared to the ileostomy I had?
Zach Klaassen: Yeah.
Michael Miller: It was nothing. Yeah, it was absolutely nothing. I could bathe just about every day if I wanted to. And all we had to do was just tape up the tube. That's it.
Zach Klaassen: Yeah.
Michael Miller: Now with the ileostomy, if I got it wet... you like hot showers, right?
Zach Klaassen: Of course.
Michael Miller: I like hot showers.
Zach Klaassen: Yeah.
Michael Miller: You have a hot shower with the ileostomy-
Zach Klaassen: It's coming off.
Michael Miller: And the plastic bag that you have to poop in-
Zach Klaassen: Yeah.
Michael Miller: Comes right off. And compared to what I did with the tube, we had the special adhesive that we got from the pharmacy, they put it over the tube. That was it.
Zach Klaassen: That's great.
And we've had a couple of scopes since then. Everything looks great. We're going to get another MRI coming up in a couple of months.
Anything you want to tell our listeners that we haven't touched on just in terms of your experience with JELMYTO®?
Michael Miller: Tell you the truth, I can't express enough how the people here have really made this the easiest possible treatment I've ever received. The people over at, is now Piedmont, the people over at Piedmont was very good. But here, the two nurses that worked on me was Marsha and Stacy, and they were terrific.
Zach Klaassen: Awesome. That's great.
Michael Miller: And that plus, how easy it was to get this treatment, that makes it a whole world of difference.
Zach Klaassen: It's outstanding.
Well, thank you very much for joining us here. Your input from a patient perspective is invaluable, so thank you very much.
Michael Miller: Thank you, sir.
Zach Klaassen: Thanks.
Michael Miller: Thank you for helping me.
Zach Klaassen: Thank you.