Colleen Young, Connect Director | @colleenyoung | Sep 6, 2022
Welcome @pcondon.
As you know, Jelmyto (mitomycin gel) for a type of urothelial cancer, which is a cancer of the lining of the urinary system. This is the first drug (approved in 2020) to treat cancer that grows in the upper part of the urinary system known as upper tract urothelial cancer.
Hard to believe that NO doctors or patients at Mayo have any information or actual experience with the use, results, or complications of new FDA approved UTUC drug treatment Jelmyto. If you do...please comment. Thank you.
Hard to believe that NO doctors or patients at Mayo have any information or actual experience with the use, results, or complications of new FDA approved UTUC drug treatment Jelmyto. If you do...please comment. Thank you.
@pcondon, I'm confident that doctors have familiarity with Jelmyto (mitomycin pyelocalyceal). However, this is a patient forum. It is possible that past and current members have not yet been prescribed this treatment or just haven't mentioned it here yet.
Why don't you get the conversation going so others with questions and experiences will join in? Have you or will you be getting treatment with Jelmyto?
Colleen...my local urologist earlier this month discovered a second cancer in my renal pelvis. About 15 months ago he burnt off the first discovery of cancer in the same ureter but not as far up into the kidney. At that time he simply recommended a wait and watch approach. At that first finding, I did some research and found Jelmyto proceedure on line. I brought it to the doctors attention but he was not familiar with the process. He preferred wait and watch and the burn off trestment.Now, with his second cancer discovery the doctor discussed getting Jelmyto treatments...but he is still personally unfamiliar with the treatment process. He nor any one in his clinic has ever administered the treatment. His comment was, "I think I can do it." My research shows numerous possible side effects and very detailed administration proceedure to properly administer the treatment. If I do have a complication, I think a doctor with previous experience might be my preference. Looking for feedback from a doctor or a series of patients with first hand experience with Jelmyto. Curious also to hear from Mayo doctors and patients about the cancer reoccurance rate following the proceedure. FDA clinical trial results show a very limited number of trial patients in the study and only about a 50% initial success rate. A high percentage of cancer return. And a high number of various complications. Looking for some positive reassurance from doctors or patience that have personal experience. I will be looking for ya'll to reply. Thank you.
Colleen...my local urologist earlier this month discovered a second cancer in my renal pelvis. About 15 months ago he burnt off the first discovery of cancer in the same ureter but not as far up into the kidney. At that time he simply recommended a wait and watch approach. At that first finding, I did some research and found Jelmyto proceedure on line. I brought it to the doctors attention but he was not familiar with the process. He preferred wait and watch and the burn off trestment.Now, with his second cancer discovery the doctor discussed getting Jelmyto treatments...but he is still personally unfamiliar with the treatment process. He nor any one in his clinic has ever administered the treatment. His comment was, "I think I can do it." My research shows numerous possible side effects and very detailed administration proceedure to properly administer the treatment. If I do have a complication, I think a doctor with previous experience might be my preference. Looking for feedback from a doctor or a series of patients with first hand experience with Jelmyto. Curious also to hear from Mayo doctors and patients about the cancer reoccurance rate following the proceedure. FDA clinical trial results show a very limited number of trial patients in the study and only about a 50% initial success rate. A high percentage of cancer return. And a high number of various complications. Looking for some positive reassurance from doctors or patience that have personal experience. I will be looking for ya'll to reply. Thank you.
I was diagnosed with Upper Tract Urothelial Carcinoma a few weeks ago. (Low grade, non invasive) My urologist did some research and found Jelmyto. He has not administered it Jelmyto but I have an appt with another dr in his practice on Monday to discuss this option. The only other option is removing my kidney so I am willing to try this treatment. I found the original trial for Jelmyto on line. It was called the Olympus trial. There are many YouTube videos about it too. I would like to save my kidney if possible. I cannot find any follow up information on the original trial patients and I find that odd. It’s all very frustrating.
Sally...did you get my reply? JELMYTO I do not see my reply posted. Still learning how to use this network. KEEP me informed please after you talk to the second doctor. We need to share because there is do little information available . I am concerned about side effects.
Sally. I contacted UROGEN the mtg of Jelmyto to ask for names of Doctors in my region of country that have used the product. I drove yesterday to University Of Iowa hospital and spoke to a refered doctor. He seemed reasonably positive . Said the drug has "melted" tuners larger than mine. Not enough time yet to determine long term cancer free results. He said minimum complications but I would like to hear that from actual patients. Complications concern me.
Sally...did you get my reply? JELMYTO I do not see my reply posted. Still learning how to use this network. KEEP me informed please after you talk to the second doctor. We need to share because there is do little information available . I am concerned about side effects.
I see this reply but not a prior one. I will post info after my appointment on Monday with the dr that I have been referred to for the Jelmyto treatment. I have at least 25 questions written down to ask him about the actual procedure and side effects. I DID find out that UNC Chapel Hill, NC (The hospital) has a Urologist with Jelmyto experience. If I’m not comfortable with the dr that I see on Monday, I will make an appointment with the UNC dr. It’s a 2 hour drive for me, but would be worth saving my kidney to have someone with experience. I will post here any information I can to help fellow cancer patients.
I had the appointment with the doctor to discuss the Jelmyto treatment today. He has treated one patient with it, but unfortunately the patient passed away from another ailment before they could finish the Jelmyto series. When I told him another Urologist told me my options were 1) Jelmyto or 2) radical nephrectomy, I could see the expression on his face even BEHIND the mask. He completely disagrees about the nephrectomy and suggested we try lasering the tumor, even though it’s in a tricky area. He stated that I have very low grade, non invasive urothelial carcinoma and everything should be done to save my kidney. He said he would do his best to get all the tumor, but if it did return, we would do the Jelmyto treatment through a nephrostomy tube, which he would insert surgically and would stay in place for the 6 treatments. He is against inserting instrumentation through the bladder every week for 6 weeks and thinks it causes unnecessary trauma to the ureter AND the patient. So, I am waiting for a call from the surgical coordinator as I have decided to try the laser procedure. I was quite relieved when the dr offered this option, and I feel it’s worth a try. Feel free to reply with any questions you might have.
I had the appointment with the doctor to discuss the Jelmyto treatment today. He has treated one patient with it, but unfortunately the patient passed away from another ailment before they could finish the Jelmyto series. When I told him another Urologist told me my options were 1) Jelmyto or 2) radical nephrectomy, I could see the expression on his face even BEHIND the mask. He completely disagrees about the nephrectomy and suggested we try lasering the tumor, even though it’s in a tricky area. He stated that I have very low grade, non invasive urothelial carcinoma and everything should be done to save my kidney. He said he would do his best to get all the tumor, but if it did return, we would do the Jelmyto treatment through a nephrostomy tube, which he would insert surgically and would stay in place for the 6 treatments. He is against inserting instrumentation through the bladder every week for 6 weeks and thinks it causes unnecessary trauma to the ureter AND the patient. So, I am waiting for a call from the surgical coordinator as I have decided to try the laser procedure. I was quite relieved when the dr offered this option, and I feel it’s worth a try. Feel free to reply with any questions you might have.
Hello @sally0526 and welcome to Connect. I see that you have already met @pcondon and you have both been sharing information.
It sounds as if the doctor that you saw today provided you with some positive feedback regarding treatment. Your actions show the importance of getting more than one opinion when you are dealing with the possibility of surgery.
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Welcome @pcondon.
As you know, Jelmyto (mitomycin gel) for a type of urothelial cancer, which is a cancer of the lining of the urinary system. This is the first drug (approved in 2020) to treat cancer that grows in the upper part of the urinary system known as upper tract urothelial cancer.
I'm tagging fellow members who have experience with ureter cancer like @c812 @medieval @suzyq2009 @jim8086 and @so1frustrated to see if any of them have had treatment with Jelmyto.
@pcondon, is this a recent diagnosis for you? Is Jelmyto being used as the first-line of treatment? When do you start treatment?
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2 ReactionsHard to believe that NO doctors or patients at Mayo have any information or actual experience with the use, results, or complications of new FDA approved UTUC drug treatment Jelmyto. If you do...please comment. Thank you.
@pcondon, I'm confident that doctors have familiarity with Jelmyto (mitomycin pyelocalyceal). However, this is a patient forum. It is possible that past and current members have not yet been prescribed this treatment or just haven't mentioned it here yet.
Why don't you get the conversation going so others with questions and experiences will join in? Have you or will you be getting treatment with Jelmyto?
-
Like -
Helpful -
Hug
1 ReactionColleen...my local urologist earlier this month discovered a second cancer in my renal pelvis. About 15 months ago he burnt off the first discovery of cancer in the same ureter but not as far up into the kidney. At that time he simply recommended a wait and watch approach. At that first finding, I did some research and found Jelmyto proceedure on line. I brought it to the doctors attention but he was not familiar with the process. He preferred wait and watch and the burn off trestment.Now, with his second cancer discovery the doctor discussed getting Jelmyto treatments...but he is still personally unfamiliar with the treatment process. He nor any one in his clinic has ever administered the treatment. His comment was, "I think I can do it." My research shows numerous possible side effects and very detailed administration proceedure to properly administer the treatment. If I do have a complication, I think a doctor with previous experience might be my preference. Looking for feedback from a doctor or a series of patients with first hand experience with Jelmyto. Curious also to hear from Mayo doctors and patients about the cancer reoccurance rate following the proceedure. FDA clinical trial results show a very limited number of trial patients in the study and only about a 50% initial success rate. A high percentage of cancer return. And a high number of various complications. Looking for some positive reassurance from doctors or patience that have personal experience. I will be looking for ya'll to reply. Thank you.
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed with Upper Tract Urothelial Carcinoma a few weeks ago. (Low grade, non invasive) My urologist did some research and found Jelmyto. He has not administered it Jelmyto but I have an appt with another dr in his practice on Monday to discuss this option. The only other option is removing my kidney so I am willing to try this treatment. I found the original trial for Jelmyto on line. It was called the Olympus trial. There are many YouTube videos about it too. I would like to save my kidney if possible. I cannot find any follow up information on the original trial patients and I find that odd. It’s all very frustrating.
-
Like -
Helpful -
Hug
1 ReactionSally...did you get my reply? JELMYTO I do not see my reply posted. Still learning how to use this network. KEEP me informed please after you talk to the second doctor. We need to share because there is do little information available . I am concerned about side effects.
-
Like -
Helpful -
Hug
2 ReactionsSally. I contacted UROGEN the mtg of Jelmyto to ask for names of Doctors in my region of country that have used the product. I drove yesterday to University Of Iowa hospital and spoke to a refered doctor. He seemed reasonably positive . Said the drug has "melted" tuners larger than mine. Not enough time yet to determine long term cancer free results. He said minimum complications but I would like to hear that from actual patients. Complications concern me.
-
Like -
Helpful -
Hug
2 ReactionsI see this reply but not a prior one. I will post info after my appointment on Monday with the dr that I have been referred to for the Jelmyto treatment. I have at least 25 questions written down to ask him about the actual procedure and side effects. I DID find out that UNC Chapel Hill, NC (The hospital) has a Urologist with Jelmyto experience. If I’m not comfortable with the dr that I see on Monday, I will make an appointment with the UNC dr. It’s a 2 hour drive for me, but would be worth saving my kidney to have someone with experience. I will post here any information I can to help fellow cancer patients.
-
Like -
Helpful -
Hug
2 ReactionsI had the appointment with the doctor to discuss the Jelmyto treatment today. He has treated one patient with it, but unfortunately the patient passed away from another ailment before they could finish the Jelmyto series. When I told him another Urologist told me my options were 1) Jelmyto or 2) radical nephrectomy, I could see the expression on his face even BEHIND the mask. He completely disagrees about the nephrectomy and suggested we try lasering the tumor, even though it’s in a tricky area. He stated that I have very low grade, non invasive urothelial carcinoma and everything should be done to save my kidney. He said he would do his best to get all the tumor, but if it did return, we would do the Jelmyto treatment through a nephrostomy tube, which he would insert surgically and would stay in place for the 6 treatments. He is against inserting instrumentation through the bladder every week for 6 weeks and thinks it causes unnecessary trauma to the ureter AND the patient. So, I am waiting for a call from the surgical coordinator as I have decided to try the laser procedure. I was quite relieved when the dr offered this option, and I feel it’s worth a try. Feel free to reply with any questions you might have.
-
Like -
Helpful -
Hug
2 ReactionsHello @sally0526 and welcome to Connect. I see that you have already met @pcondon and you have both been sharing information.
It sounds as if the doctor that you saw today provided you with some positive feedback regarding treatment. Your actions show the importance of getting more than one opinion when you are dealing with the possibility of surgery.
How are you feeling now?
-
Like -
Helpful -
Hug
1 Reaction