@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.
@s38mmhoser Sorry to hear of your difficulties with the second round. All 9 of my BCG doses to date have been what they call 1/3 BCG dose. I've tolerated that very well, especially when I read of others having difficulties. My second cystoscopy after the second round of 3 was NED, and now I'm scheduled for the third round of 3 BCG instillations in May with the next cystoscopy at the end of June. I've read where a 1/3 dose of BCG is not that atypical and seems to be as effective as higher percentage dosages. You might consider dropping to a 1/3 dose. There are other alternatives such as Gem/Doc or Adstiladrin. Regardless of which path you take, best wishes for a tolerable successful outcome.
@jlp27 had a meeting with my urologist and another cystoscope done, still lots of inflammation on bladder but no sign of cancer. He has taking me of bcg treatment and is sending me to his team of specialists to determine which treatment would be best for me forward.
@jlp27 had a meeting with my urologist and another cystoscope done, still lots of inflammation on bladder but no sign of cancer. He has taking me of bcg treatment and is sending me to his team of specialists to determine which treatment would be best for me forward.
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@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.
@jlp27 had a meeting with my urologist and another cystoscope done, still lots of inflammation on bladder but no sign of cancer. He has taking me of bcg treatment and is sending me to his team of specialists to determine which treatment would be best for me forward.
@s38mmhoser I hope that they find a course of action that works successfully for you.