@toentje, am I understanding correctly that you are experiencing severe penile and lower pelvic pain while on BCG treatment? Have you mentioned this to your oncologist or symptom management nurse?
@toentje, am I understanding correctly that you are experiencing severe penile and lower pelvic pain while on BCG treatment? Have you mentioned this to your oncologist or symptom management nurse?
@colleenyoung my bladder treatment has been finished since two year’s ago. It left me with severe penile pain up to today. The urge to urinate is on going with severe pain. Nighttime getting up to 7 times with very small amounts of urine with stabbing pain. My oncologist has really not addressed this problem. I’ve asked for pain blocking injection but no response. Or Botox, hope you may have suggestions. Thanks, Ralph
I’m reposting this earlier contribution with an update on my experience with BCG after an initial TURBT for a 5cm Ta NMIBC. After initial round of six with no early issues except for the normal burning and urgency except flu like symptoms after the 5th snd 6th instillations. My first three maintenance treatments continued to give me more issues including hematuria, body aches, headaches, nausea and fatigue. I had my second 3x maintenance treatments ending three months ago and side effects worsened. My GP believes that I had an autoimmune event causing reactive arthritis in my hip and knee. I think I’ve had my last BCG treatment but it has kept me NED for over a year so I’m still an advocate for the treatment if you can tolerate it. I had my evaluation cystoscopy about a month ago and was still NED so we decided to just go with periodic cystoscopy unless something shows up. I’m not sure what my options would be then since BCG is now off the table for me. Regardless the evidence for its prevention of tumor reoccurrence is very strong so my recommendation would be don’t forego it even for non muscle invasive high grade tumors. Often even low grade patients get some BCG treatment.
Connect
Connect
Like
Helpful
Hug
@toentje, am I understanding correctly that you are experiencing severe penile and lower pelvic pain while on BCG treatment? Have you mentioned this to your oncologist or symptom management nurse?
@colleenyoung my bladder treatment has been finished since two year’s ago. It left me with severe penile pain up to today. The urge to urinate is on going with severe pain. Nighttime getting up to 7 times with very small amounts of urine with stabbing pain. My oncologist has really not addressed this problem. I’ve asked for pain blocking injection but no response. Or Botox, hope you may have suggestions. Thanks, Ralph
This is an update. What side effects have you had with mirabegron?
I’m reposting this earlier contribution with an update on my experience with BCG after an initial TURBT for a 5cm Ta NMIBC. After initial round of six with no early issues except for the normal burning and urgency except flu like symptoms after the 5th snd 6th instillations. My first three maintenance treatments continued to give me more issues including hematuria, body aches, headaches, nausea and fatigue. I had my second 3x maintenance treatments ending three months ago and side effects worsened. My GP believes that I had an autoimmune event causing reactive arthritis in my hip and knee. I think I’ve had my last BCG treatment but it has kept me NED for over a year so I’m still an advocate for the treatment if you can tolerate it. I had my evaluation cystoscopy about a month ago and was still NED so we decided to just go with periodic cystoscopy unless something shows up. I’m not sure what my options would be then since BCG is now off the table for me. Regardless the evidence for its prevention of tumor reoccurrence is very strong so my recommendation would be don’t forego it even for non muscle invasive high grade tumors. Often even low grade patients get some BCG treatment.