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.
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?
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.
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.
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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.
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1 Reaction@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 ReactionHard 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.
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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