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.
Sally, have you had your laser surgery yet on your UTUC kidney cancer? I am on round 3 of Jelmyto treatments. I did the laser proceedure about two years ago. HOW ARE YOU?
Such a helpful and hopeful post, Sally. I appreciate your sharing this for the sake of others who may be new to upper tract urothelial cancer or transitional cell carcinoma.
I’m doing great. I have NO pain at all. My bathroom visits have been reduced by half, and my bladder is emptying completely. I hadn’t realized how much the UTUC tumor was interfering with that aspect of my life. I’m “cautiously optimistic” about my UTUC and of course, my mind goes to that “dark place” occasionally, which is normal. 3 months ago I was given 2 choices—Jelmyto or a radical nephrectomy. I’m thankful every single day that I got 2nd and third opinions, and that I found a doctor willing to try and save my kidney. And thank you to Mayo Clinic Connect for being a place where those of us diagnosed with confusing and devastating news concerning our health can do research and get advice.
New to this forum but looking for feedback from others who have received Jelmyto for low grade UTUC. My 85 year old mother received 6 treatments. Treatments 1-3, went relatively smoothly with minimal discomfort after the procedure but the last 3 have been quite difficult. She has had a UTI twice, and continues with intense abdominal and flank pain and a complete lack of energy. Last week she had an ultrasound and the doctor said her kidney was swollen. The dr prescribed Flomax originally but has now scheduled for her to have a stent inserted in the coming week. Her urologist is not from a cancer center or a teaching hospital so I am concerned the lack of administration familiarity may have been a factor in the intensity of the side effects or worse yet created a new trauma to her kidney from the frequent procedures. The urology practice seems unsure of next steps and their lack of urgency concerns me, especially for a patient that is 85.
I had the laser ablation of my UTUC tumor on Tuesday, 10-25. It went well and my doctor said he was able to get all of the visible tumor using a basket (the instrument used to remove kidney stones) before using the laser on the last bit. He inserted a stent and sent me home. I had some discomfort (not really what I consider pain) for a few days. I didn't even have to take pain meds. I did take Tamulosin (Flowmax) to keep my ureter relaxed and also Pyridium (prescription AZO) for any burning during urination. I never really had any burning so i stopped it after 2 days. I went back for my follow up appointment yesterday. He removed my stent and then we talked. He said that he is confident that he removed the entire tumor BUT (there's always a BUT) he wants to do another uroscopy in 3 months just to be sure. If any tumor has grown back, he will laser it on the spot. One important note- my doctor told me I am NOT a good candidate for the Jelmyto treatment due to where my tumor had been growing, and the physical pathology of the tumor. I trust his opinion, but I plan on discussing this further with him at our next appointment. I am relieved, but cautious to consider myself "cured". I can't help it. If you are reading this, you know that once you hear the word "cancer" your life is altered---forever. All I can do is trust my medical team and pray. I will continue to keep up with this website, in case there is anything I can do to help others dealing with UTUC.
Such a helpful and hopeful post, Sally. I appreciate your sharing this for the sake of others who may be new to upper tract urothelial cancer or transitional cell carcinoma.
I had the laser ablation of my UTUC tumor on Tuesday, 10-25. It went well and my doctor said he was able to get all of the visible tumor using a basket (the instrument used to remove kidney stones) before using the laser on the last bit. He inserted a stent and sent me home. I had some discomfort (not really what I consider pain) for a few days. I didn't even have to take pain meds. I did take Tamulosin (Flowmax) to keep my ureter relaxed and also Pyridium (prescription AZO) for any burning during urination. I never really had any burning so i stopped it after 2 days. I went back for my follow up appointment yesterday. He removed my stent and then we talked. He said that he is confident that he removed the entire tumor BUT (there's always a BUT) he wants to do another uroscopy in 3 months just to be sure. If any tumor has grown back, he will laser it on the spot. One important note- my doctor told me I am NOT a good candidate for the Jelmyto treatment due to where my tumor had been growing, and the physical pathology of the tumor. I trust his opinion, but I plan on discussing this further with him at our next appointment. I am relieved, but cautious to consider myself "cured". I can't help it. If you are reading this, you know that once you hear the word "cancer" your life is altered---forever. All I can do is trust my medical team and pray. I will continue to keep up with this website, in case there is anything I can do to help others dealing with UTUC.
I had my appointment with a Nephrologist yesterday. I was referred to him by my PCP months ago before my UTUC diagnosis for a blood pressure problem. The blood pressure problem eased up over time but I decided to keep this appointment to get a THIRD opinion on my UTUC treatment by my SECOND opinion urologist. First, he looked at my records concerning my blood pressure and assured me that my numbers weren’t bad after all which put me at ease. Then we discussed my upcoming laser treatment for my UTUC. He agrees completely with that course of treatment and commended me for getting the second opinion. He was shocked that my first urologist only gave me 2 choices for my low grade non invasive UTUC (Jelmyto or a radical nephrectomy). (Although he DID say a radical nephrectomy IS the appropriate treatment for high grade invasive UTUC. ). He said my both of my kidneys appear to be healthy (just a small drop in function-probably due to the tumor blocking part of my left ureter) and a healthy kidney should not even be considered for removal, even with the low grade UTUC. He stated that everything should be done to eliminate the UTUC before even considering a nephrectomy and the laser ablation was an excellent start. This consultation was such a relief and confirms my decision to go ahead with the laser surgery. Please….if you have any doubts at all about a diagnosis or a treatment plan—get second and even third opinions. I felt almost happy when I left the Nephrologist’s office. He took his time explaining everything to me and put me at ease about my upcoming UTUC laser surgery. He is optimistic for my prognosis and that means a lot to me. I feel like I can relax a bit knowing I’ve made the right decision for my health. 🙂
I had my appointment with a Nephrologist yesterday. I was referred to him by my PCP months ago before my UTUC diagnosis for a blood pressure problem. The blood pressure problem eased up over time but I decided to keep this appointment to get a THIRD opinion on my UTUC treatment by my SECOND opinion urologist. First, he looked at my records concerning my blood pressure and assured me that my numbers weren’t bad after all which put me at ease. Then we discussed my upcoming laser treatment for my UTUC. He agrees completely with that course of treatment and commended me for getting the second opinion. He was shocked that my first urologist only gave me 2 choices for my low grade non invasive UTUC (Jelmyto or a radical nephrectomy). (Although he DID say a radical nephrectomy IS the appropriate treatment for high grade invasive UTUC. ). He said my both of my kidneys appear to be healthy (just a small drop in function-probably due to the tumor blocking part of my left ureter) and a healthy kidney should not even be considered for removal, even with the low grade UTUC. He stated that everything should be done to eliminate the UTUC before even considering a nephrectomy and the laser ablation was an excellent start. This consultation was such a relief and confirms my decision to go ahead with the laser surgery. Please….if you have any doubts at all about a diagnosis or a treatment plan—get second and even third opinions. I felt almost happy when I left the Nephrologist’s office. He took his time explaining everything to me and put me at ease about my upcoming UTUC laser surgery. He is optimistic for my prognosis and that means a lot to me. I feel like I can relax a bit knowing I’ve made the right decision for my health. 🙂
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. 😊
Sally...I will for sure continue to post anything I learn that may be of help to you and all that follow our conversations. Like you, this diagnosis and the worr/fear never really disappears from our thoughts. I wish you success in the lazer fulgration proceedure, and possibly your doctor's may recommend the JELMYTO proceedure as an extra insurance proceedure followup. And, I did learn from UROGEN that Jelmyto process can be done more than just once if doctors believe it is necessary. Wish others with our UTUC would participate in this Mayo discussion forum. After I talk to other patients refered to me by UroJen...I will share their results with the treatments.
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.
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. 😊
Hi all! My laser surgery to ablate my UTUC tumor has been set up for October 25th. I’m very glad this treatment option was offered by a urologist who wants to save my kidney as much as I do! Also, to anyone reading this who is hesitant to get a second or even third opinion because they are worried about offending their current doctor…please let that feeling go. As a matter of fact, your current doctor should be ENCOURAGING you to get a second opinion. Just make the call and follow through. It’s your health and your right to manage it. I have an appointment next week with a nephrologist for a THIRD opinion, and to establish a relationship just in case my kidney does eventually have to come out. I’m trying to be proactive, even though I’m still in shock somewhat from hearing my diagnosis. It’s definitely life changing and it shifts priorities for sure. Also, thank you to Mayo Clinic Connect for providing this forum for us. It has been a tremendous help to me to be able to vent and discuss my diagnosis with other cancer patients. 😊
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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Sally, have you had your laser surgery yet on your UTUC kidney cancer? I am on round 3 of Jelmyto treatments. I did the laser proceedure about two years ago. HOW ARE YOU?
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1 ReactionI’m doing great. I have NO pain at all. My bathroom visits have been reduced by half, and my bladder is emptying completely. I hadn’t realized how much the UTUC tumor was interfering with that aspect of my life. I’m “cautiously optimistic” about my UTUC and of course, my mind goes to that “dark place” occasionally, which is normal. 3 months ago I was given 2 choices—Jelmyto or a radical nephrectomy. I’m thankful every single day that I got 2nd and third opinions, and that I found a doctor willing to try and save my kidney. And thank you to Mayo Clinic Connect for being a place where those of us diagnosed with confusing and devastating news concerning our health can do research and get advice.
New to this forum but looking for feedback from others who have received Jelmyto for low grade UTUC. My 85 year old mother received 6 treatments. Treatments 1-3, went relatively smoothly with minimal discomfort after the procedure but the last 3 have been quite difficult. She has had a UTI twice, and continues with intense abdominal and flank pain and a complete lack of energy. Last week she had an ultrasound and the doctor said her kidney was swollen. The dr prescribed Flomax originally but has now scheduled for her to have a stent inserted in the coming week. Her urologist is not from a cancer center or a teaching hospital so I am concerned the lack of administration familiarity may have been a factor in the intensity of the side effects or worse yet created a new trauma to her kidney from the frequent procedures. The urology practice seems unsure of next steps and their lack of urgency concerns me, especially for a patient that is 85.
Such a helpful and hopeful post, Sally. I appreciate your sharing this for the sake of others who may be new to upper tract urothelial cancer or transitional cell carcinoma.
It's been a few days. Still all good?
I had the laser ablation of my UTUC tumor on Tuesday, 10-25. It went well and my doctor said he was able to get all of the visible tumor using a basket (the instrument used to remove kidney stones) before using the laser on the last bit. He inserted a stent and sent me home. I had some discomfort (not really what I consider pain) for a few days. I didn't even have to take pain meds. I did take Tamulosin (Flowmax) to keep my ureter relaxed and also Pyridium (prescription AZO) for any burning during urination. I never really had any burning so i stopped it after 2 days. I went back for my follow up appointment yesterday. He removed my stent and then we talked. He said that he is confident that he removed the entire tumor BUT (there's always a BUT) he wants to do another uroscopy in 3 months just to be sure. If any tumor has grown back, he will laser it on the spot. One important note- my doctor told me I am NOT a good candidate for the Jelmyto treatment due to where my tumor had been growing, and the physical pathology of the tumor. I trust his opinion, but I plan on discussing this further with him at our next appointment. I am relieved, but cautious to consider myself "cured". I can't help it. If you are reading this, you know that once you hear the word "cancer" your life is altered---forever. All I can do is trust my medical team and pray. I will continue to keep up with this website, in case there is anything I can do to help others dealing with UTUC.
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1 ReactionSuch great news, Sally. Having confidence in your care is important.
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1 ReactionI had my appointment with a Nephrologist yesterday. I was referred to him by my PCP months ago before my UTUC diagnosis for a blood pressure problem. The blood pressure problem eased up over time but I decided to keep this appointment to get a THIRD opinion on my UTUC treatment by my SECOND opinion urologist. First, he looked at my records concerning my blood pressure and assured me that my numbers weren’t bad after all which put me at ease. Then we discussed my upcoming laser treatment for my UTUC. He agrees completely with that course of treatment and commended me for getting the second opinion. He was shocked that my first urologist only gave me 2 choices for my low grade non invasive UTUC (Jelmyto or a radical nephrectomy). (Although he DID say a radical nephrectomy IS the appropriate treatment for high grade invasive UTUC. ). He said my both of my kidneys appear to be healthy (just a small drop in function-probably due to the tumor blocking part of my left ureter) and a healthy kidney should not even be considered for removal, even with the low grade UTUC. He stated that everything should be done to eliminate the UTUC before even considering a nephrectomy and the laser ablation was an excellent start. This consultation was such a relief and confirms my decision to go ahead with the laser surgery. Please….if you have any doubts at all about a diagnosis or a treatment plan—get second and even third opinions. I felt almost happy when I left the Nephrologist’s office. He took his time explaining everything to me and put me at ease about my upcoming UTUC laser surgery. He is optimistic for my prognosis and that means a lot to me. I feel like I can relax a bit knowing I’ve made the right decision for my health. 🙂
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Like -
Helpful -
Hug
2 ReactionsSally...I will for sure continue to post anything I learn that may be of help to you and all that follow our conversations. Like you, this diagnosis and the worr/fear never really disappears from our thoughts. I wish you success in the lazer fulgration proceedure, and possibly your doctor's may recommend the JELMYTO proceedure as an extra insurance proceedure followup. And, I did learn from UROGEN that Jelmyto process can be done more than just once if doctors believe it is necessary. Wish others with our UTUC would participate in this Mayo discussion forum. After I talk to other patients refered to me by UroJen...I will share their results with the treatments.
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Like -
Helpful -
Hug
2 ReactionsThis 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. 😊
-
Like -
Helpful -
Hug
1 ReactionSally...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.