During round one of the series of 6 instillations last year, with one week skipped between #1 & #2 due to clinic scheduling, all on Tuesdays, and a 33% strength of BCG, I had a bad headache the nights of #1 & #2, hematuria & a small clot during #6, and chills & mild burning during urination the day of each instillation. I just finished #3 in the second round on Tuesday, (#1 on a Tuesday, skip a week, #2 on a Thursday, and #3 this past Tuesday). This time on each installation day, I had much more hematuria, urination burning & mini-clots, headaches, and chills. Any of these side effects only lasted 24 hours. From other folks stories on this site, I'm lucky thus far to have far fewer side effects than most. The first cystoscopy check was in mid-December: NED. My next cystoscopy check is scheduled for March 31st. Honestly, the toughest part of BCG is the catheter insertion, which really doesn't last very long, but that I view as a small inconvenience to endure for the promise of a lower risk of recurrence or progression.
During round one of the series of 6 instillations last year, with one week skipped between #1 & #2 due to clinic scheduling, all on Tuesdays, and a 33% strength of BCG, I had a bad headache the nights of #1 & #2, hematuria & a small clot during #6, and chills & mild burning during urination the day of each instillation. I just finished #3 in the second round on Tuesday, (#1 on a Tuesday, skip a week, #2 on a Thursday, and #3 this past Tuesday). This time on each installation day, I had much more hematuria, urination burning & mini-clots, headaches, and chills. Any of these side effects only lasted 24 hours. From other folks stories on this site, I'm lucky thus far to have far fewer side effects than most. The first cystoscopy check was in mid-December: NED. My next cystoscopy check is scheduled for March 31st. Honestly, the toughest part of BCG is the catheter insertion, which really doesn't last very long, but that I view as a small inconvenience to endure for the promise of a lower risk of recurrence or progression.
@jlopez7868 Yes, lidocaine has been used each and every time prior to inserting the catheter. They seemed to use a more extensive and deeper penetrating lidocaine (my perception), during the cystoscopy checkup when the doctor inserts the camera. "Would you like to watch the inside of your bladder on TV?" "No thanks, just give me the news." Another post instillation tidbit: Out of the 9 BCG sessions thus far, I think it was 3 or 4 when they had trouble inserting the catheter. The nurse left and said that she needed to get a "bigger one". Talk about stress! Apparently the bigger tube was stiffer and went in easier, and they've been using that size ever since. Go figure... As for burning urination, once the 2 hours is up, we need to void the BCG. I'm assuming that its active ingredient must really irritate the skin that it comes in contact with, thus the burning sensation as you pass it out. It is very noticeable, but very tolerable and over quickly. Not really a big deal thus far.
@jlopez7868 Yes, lidocaine has been used each and every time prior to inserting the catheter. They seemed to use a more extensive and deeper penetrating lidocaine (my perception), during the cystoscopy checkup when the doctor inserts the camera. "Would you like to watch the inside of your bladder on TV?" "No thanks, just give me the news." Another post instillation tidbit: Out of the 9 BCG sessions thus far, I think it was 3 or 4 when they had trouble inserting the catheter. The nurse left and said that she needed to get a "bigger one". Talk about stress! Apparently the bigger tube was stiffer and went in easier, and they've been using that size ever since. Go figure... As for burning urination, once the 2 hours is up, we need to void the BCG. I'm assuming that its active ingredient must really irritate the skin that it comes in contact with, thus the burning sensation as you pass it out. It is very noticeable, but very tolerable and over quickly. Not really a big deal thus far.
@jlp27 I am so glad to hear about the lidocaine, I do not tolerate pain very well so praying that the side effects are not so bad. was burning the only side effects you had, that would be wonderful. was it difficult holding the liquid in the bladder for 2 hours?
@jlp27 I am so glad to hear about the lidocaine, I do not tolerate pain very well so praying that the side effects are not so bad. was burning the only side effects you had, that would be wonderful. was it difficult holding the liquid in the bladder for 2 hours?
@jlopez7868 Please go back to my original post above in this thread. It details all of the side effects that I experienced in both rounds 1 and 2 of BCG (9 total). It wasn't difficult at all holding the liquid in the bladder for 2 hours; some days I forgot and went past the 2 hour window. After #2 BCG in the current round of 3, the nurse indicated that if I drank some water about 1 hour from the 2 hour deadline, the urination burning would be less. This did seem to help after #3 of 3. Even drinking water at the one hour mark didn't negatively impact my ability to hold the BCG for the required 2 hours.
I finished the first 6 BCG treatments 2 weeks ago. I experienced severe joint pain in my shoulders and hips that I still have but it seems to be decreasing in severity. I doubt I will continue with the maintenance if the scope shows NED. I also have fatigue since start of BCG.
@jlopez7868 yes lidocaine. The inserted catheter which took 10 seconds. While catheter was in bcg was put through which took about 1 minute. Catheter taken out about 5 seconds. Just discomfort. I think taking catheter out after TURBT hurt more. Think after you know what’s going to happen and nurse talks you through it it’s not too bad. Good Luck, God bless.
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During round one of the series of 6 instillations last year, with one week skipped between #1 & #2 due to clinic scheduling, all on Tuesdays, and a 33% strength of BCG, I had a bad headache the nights of #1 & #2, hematuria & a small clot during #6, and chills & mild burning during urination the day of each instillation. I just finished #3 in the second round on Tuesday, (#1 on a Tuesday, skip a week, #2 on a Thursday, and #3 this past Tuesday). This time on each installation day, I had much more hematuria, urination burning & mini-clots, headaches, and chills. Any of these side effects only lasted 24 hours. From other folks stories on this site, I'm lucky thus far to have far fewer side effects than most. The first cystoscopy check was in mid-December: NED. My next cystoscopy check is scheduled for March 31st. Honestly, the toughest part of BCG is the catheter insertion, which really doesn't last very long, but that I view as a small inconvenience to endure for the promise of a lower risk of recurrence or progression.
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3 ReactionsHi, I had treatment 1 and 2 with only tiredness. No other side effects.
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2 Reactions@h2onsun Why only 2 treatments, was the burning tolerable, thanks for your quick reply.
@jlp27 thank you for the quick response, did they use lidocaine before inserting the catheter, was the burning tolerable
@jlopez7868 Yes, lidocaine has been used each and every time prior to inserting the catheter. They seemed to use a more extensive and deeper penetrating lidocaine (my perception), during the cystoscopy checkup when the doctor inserts the camera. "Would you like to watch the inside of your bladder on TV?" "No thanks, just give me the news." Another post instillation tidbit: Out of the 9 BCG sessions thus far, I think it was 3 or 4 when they had trouble inserting the catheter. The nurse left and said that she needed to get a "bigger one". Talk about stress! Apparently the bigger tube was stiffer and went in easier, and they've been using that size ever since. Go figure... As for burning urination, once the 2 hours is up, we need to void the BCG. I'm assuming that its active ingredient must really irritate the skin that it comes in contact with, thus the burning sensation as you pass it out. It is very noticeable, but very tolerable and over quickly. Not really a big deal thus far.
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2 Reactions@jlp27 I am so glad to hear about the lidocaine, I do not tolerate pain very well so praying that the side effects are not so bad. was burning the only side effects you had, that would be wonderful. was it difficult holding the liquid in the bladder for 2 hours?
@jlopez7868 Please go back to my original post above in this thread. It details all of the side effects that I experienced in both rounds 1 and 2 of BCG (9 total). It wasn't difficult at all holding the liquid in the bladder for 2 hours; some days I forgot and went past the 2 hour window. After #2 BCG in the current round of 3, the nurse indicated that if I drank some water about 1 hour from the 2 hour deadline, the urination burning would be less. This did seem to help after #3 of 3. Even drinking water at the one hour mark didn't negatively impact my ability to hold the BCG for the required 2 hours.
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2 ReactionsThank you, I will drink the water one hour into the 2 hour holding, thanks for the tip. are you on the monthly treatment or are you finished
I finished the first 6 BCG treatments 2 weeks ago. I experienced severe joint pain in my shoulders and hips that I still have but it seems to be decreasing in severity. I doubt I will continue with the maintenance if the scope shows NED. I also have fatigue since start of BCG.
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2 Reactions@jlopez7868 yes lidocaine. The inserted catheter which took 10 seconds. While catheter was in bcg was put through which took about 1 minute. Catheter taken out about 5 seconds. Just discomfort. I think taking catheter out after TURBT hurt more. Think after you know what’s going to happen and nurse talks you through it it’s not too bad. Good Luck, God bless.
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