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@pcondon

Sally...as I told you earlier, I proactivly reached out to UROGEN the manufacturer of Jelmyto to see if I could get any more up to date data on the product, the success rates of cure, the side effects, and any improved 'best practices' for the proceedure. A very informed lady did reply and called me yesterday. She said they now have a total of 100's of patients that have or are on the drug. She admits that the patient/doctor feedback is difficult to gather (although problems and side effects are to be reported to them and FDA), doctors often do not follow through. She said the alternative direct tube into the kidney has reduced the number of ureter strictures issues, and she sent to a linked report that I could read that study. She also had that a different UROGEN, patient advocate person contact me...and they are going to set up a way for me to talk direct with others who have used the JELMYTO process. I will let you know more after this direct patient research process. If you would like my direct phone number to chat further I am open to sharing and easier discussion. Texting on my cell phone is to slow. God Bless.

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Replies to "Sally...as I told you earlier, I proactivly reached out to UROGEN the manufacturer of Jelmyto to..."

This information is so appreciated. I’m glad that UroGen was responsive to your inquiry. They have to know that patients are anxious for information about their product (Jelmyto). That someone actually called you back and is facilitating yet another contact is wonderful. Perhaps you can keep us posted via this forum, so others can benefit from the knowledge you are obtaining. Sharing what you find out will truly be a blessing to those of us frustrated by the lack of information about Jelmyto on the internet. I will definitely be checking here for updates. I’m trying to “take it easy” and relax about my situation for the coming weeks leading to my laser treatment. As everybody who has been diagnosed with cancer knows, it takes over your life. I’m trying to take “days off” from thinking about it, but it’s not easy to do as my brain won’t cooperate! But, I will check in here at least daily because it helps me tremendously to have the support and fellowship from others on this journey. Thank you for your efforts to get us info on Jelmyto and I look forward to your posts. 😊