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DiscussionJelmyto in my future: What's treatment like? What should I know?
Bladder Cancer | Last Active: 5 days ago | Replies (14)Comment receiving replies
Replies to "Btw, initially the cancer was low grade, non invasive. By the time he had the offending..."
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@vickipm Thank you for your both of your replies! As you know, this kind of cancer is a roller coaster ride. And not the FUN type. You DID answer a question for me that my (several) urologists keep dodging. And that is: Can low grade non-invasive UTUC morph into high grade invasive UTUC. I've been lucky that mine has stayed low grade. My understanding is that Jelmyto is ONLY prescribed for low grade non-invasive UTUC. Maybe your husbands had turned high grade by the time he received the Jelmyto treatment and that's why it didn't work. I am seeing my current urologist on April 1 to consult about the referral to the new urologist who has experience with Jelmyto (he is also an oncologist). I will also ask about the Signaterra blood test. I'm glad your husband is feeling good. I feel fine but as you know, sometimes we UTUC patients have a little pity party because the burning question is always "HOW DID I GET THIS DISEASE??" I've never smoked or worked with chemicals. I took the genetic test for Lynch Syndrome and I don't have it. I'm trying to stay positive and I'm lucky to have a wonderful husband (of 42 years) who is beside me at every dr appt. Again, thank you for replying to my inquiry and I wish you and your husband all the best!