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Just starting my maintenance BCG treatments – once per week for the next three weeks. My BCG nurse frequently reminds me of the side effects I may experience and unfortunately, I was “hammered” with burning when urinating, blood in the urine, chills and fatigue within two hours of the first treatment yesterday. (I was strongly hoping to avoid these!) I was up to the bathroom at least 8 times overnight as well which hasn’t helped with the fatigue. The blood in the urine subsided within the first few hours as did the burning, but I still feel chilled on and off during the day. I know I am very fortunate to be on the BCG treatment and remain hopeful that it will be effective. I have just been reminded, though, that this condition and treatments do take their toll. I know I will never get used to catheters, and burning and bleeding during urination. The latter two bring tears to my eyes. This is my rant for the day.
Hi Cdn,
Welcome to the Forum and sorry to hear about your experience with BCG thus far. I hope the burn will be less severe for you on the next application. I know others have experienced similar discomfort. Keep well.My Best,
I underwent 6 weeks of BCG treatment in the fall of 2023. When I was reassessed in Jan 2024, a new tumor was discovered. It appears that BCG did not work for me but my concern revolves around the length of time that I’m able to the BCG on the day of treatment. I barely made 45 minutes fallen well short of the 2 hours that is suggested. I’ve restarted the BCG treatment once again last week and I am determined to keep it in for the 2 hours to allow the BCG treatment to be more effective.
Has anyone else encountered this issue and how can it be dealt with?
Hi Cdn:
I’m sorry to learn of the hefty side effects that you have experienced during the maintenance BCG. The maintenance treatments can be very difficult. Been there, done that. I strongly recommend if you have not already done so, discuss your side effects with your medical team. It may be time to consider a reduction in the dosage of BCG and/or change up in the schedule of treatments. When I had over the top side effects in 2011 my uro reduced my dosage down to 25%. They do prefer not to go lower than 1/3 but in my case 25% turned out to be the sweet spot. I was able to tolerate the treatment better.
The other option is to ask if another type of drug treatment would be possible. The newest alternative is a combo treatment of Gemcitabine and Doxetaxel (can’t remember the spelling). Many patients who couldn’t tolerate BCG have had good results with this. Hope this helps. Best Wishes going forward. (((HUGS)))
Hi MikeJS:
What is the reason for not being able to hold the BCG? Is it bladder spasms, pain or does your bladder fill up quickly?
For a bladder filling up quickly, I have found cutting off the fluids earlier ie 5-6 hours before treatment is better than the 4 hours I was told. My kidneys seem to pick up speed during BCG treatments and my bladder fills up very quickly so the longer cutoff time helps.
For bladder spasms during treatment I use a hot water bottle against my bladder and make sure that I’m laying down as much as possible during the 2 hours. My bladder hates catheters with a passion and will cramp up and protest right away. For me this is the only thing that helps.
For bladder pain during treatment – I take a couple of Tylenol about a 1/2 hour before the start of treatment. I usually keep on Tylenol for a couple of days post treatment which seems to reduce the bladder pain and irritation.
Even though it is no longer recommended that you do the “BBQ chicken rotation” by laying on the bed and turning over every 15 minutes and can move about naturally while the BCG is in you, I still lay down and do the turning over every 15 minutes. I have no definite proof but it makes sense to me to do this because if you are upright and moving around the drug will sit at the bottom of your bladder all the time. If you are laying down on a bed or couch and rotate my theory is that all sides of the bladder will get coated. When I had a small recurrence in 2010 the tumour was on the top of my bladder so when I did the second round of BCG I included a downward dog yoga position in the routine to get the BCG to the top of my bladder.
During 2010-12 I did manage to get through all 15 treatments and was successful getting to the 2 hours the majority of the time by doing this. Hope these tips help. ((((HUGS)))
Hi marysue
Thank you so much for your reply. I very much appreciate it. The main reason is bladder spasms and I was wondering whether the catheter causes it or whether it’s the BCG (I also have a hatred and intolerance to catheters – sounds common). I’m going to try your suggestions including taking the Tylenol and using the hot water bottle. I’m also going to go to extremes and not have fluids for 14 or 15 hours. I’ve been told the this High Grade Urothelial Carcinoma will not go away and will return. I’m desperate to make sure it does reoccur every 3 months which is what’s happened.
Thank again
I also have wondered if the after- or side-effects are caused by the catheter for the BCG or the BCG itself. Just finished week 2 treatment (Monday) and suffered the same effects. Thankfully, the worst of it subsides after the first day but the urgency and burning during urination seem to persist until the end of the week. Thankfully I have a break this coming Monday and finish the three week course the following Monday. With this break, I think I can get through all three treatments. I suspect that the BCG is the bigger factor in these after-effects but there is nothing remotely pleasant about repeated catheter insertions, and I know my BCG nurse is very careful. I pray this will be successful.
Hi Cdn:
What I discovered is that the BCG can inflame the urethra just like the inside of the bladder. For myself, I figured out this was the cause of a lot of burning post BCG. I just drank a lot of water, stayed off caffeine, took Tylenol and applied low heat down there if I was really sore. It does heal up when the treatments are finished but until then I did suffer a lot of discomfort. ((((HUGS))))
Hi Cdn, I hope your symptoms have subsided…they sound prety severe! I am due to start my three weeks maintenance BCG in about a month. I had very few symptoms with the 6 week induction course and I am hoping that this continues to be the case for the maintenance round. Did you have same symptoms with your induction course that you are now experiencing with your maintenance course? (They sound like they might be more severe?). Also, did you start your maintenance course three months from the beginning of your induction round or was it three months from the end of your induction round? Trying to figure out when my maintenance will start so that I can plan around it. 🙂
It looks like your last treatment might be this week….hope you can recover well and the BCG has done it’s ‘trick’.
My six week induction course concluded in the last week of November, 2023. My maintenance course began in the middle of March of this year – more than three months later. I am certainly experiencing more urethral burning and penile pain
My six week induction course concluded in the last week of November, 2023. My maintenance course began in the middle of March of this year – more than three months later. I am certainly experiencing more urethral burning and penile pain this time compared to the induction course. It is at its worst on the day of the treatment and the urethral burning gradually lessens by the end of the week. The bleeding occurs only on the day of treatment, but I am experiencing more sporadic penile pain during the rest of the week. The extra week delay for the third treatment is simply due to my treatment day (Monday) coinciding with the Easter weekend Monday holiday for my BCG nurse.
I have now completed the first three maintenance BCG treatments. I still believe I am fortunate to have this treatment option but the impact on me has been unexpectedly severe. I seem to practically live in the bathroom since the third treatment yesterday, and I cannot shake a pounding headache (I tried acetaminophen and ibuprofen, but with little effect). I recognize these effects are not unusual and many of you have been through this. There are times when it is very difficult to stay positive. The literature hardly acknowledges the real impact of these treatments on the person at the time of treatment. The difficulty sleeping adds to the impact.
I was talking to my BCG nurse yesterday at the treatment. He explained that some patients need to cut back on the treatments or space them out because of these serious effects. I am relieved that I now have at least three months before the next series. This is day two after the treatment and I slept for 4-5 hours during the day on top of sleeping last night (albeit up every hour to the bathroom). I expect I may have to space out the next series. My concern is I did have a two week stretch between the second and third treatments because of the Easter weekend, and I still got hit very hard after the third treatment. On a positive note, my bladder control seems to be improving.
Hi Cdn:
I found that I was very sleepy for the first two days after treatments. I just gave in and took naps as needed and felt better for it. I have talked to some people that pushed themselves to go for walks despite the fatigue and they said that worked for them. I just got even more tired.
As for the other side effects, they sound like they are getting over the top in severity. I agree with what your BCG nurse mentioned about spacing out the treatments or cutting back. Some doctors will lower the dosage as well. Mine did. During my first round of 15 between 2010-2012 I managed the first 6, the first set of 3 and the first treatment of the second set of 3 at full dose and then had to ask for a lower dose. We settled on a quarter dose and I managed to finish the final five.
This time around in 2022-23, I was supposed to do another round of 15 but stopped after 7 treatments due to massive bladder inflammation. I too, had a very severe reaction after Christmas 2022 and having a 3 week break. I decided to call it at that point. I was in so much pain even with Tylenol/Advil. I think the difference the third time around was that I’d had Epirubicin put directly in my bladder post TURBT and that set off massive inflammation that did not set me up well for the follow up BCG even though I didn’t start treatments for 8 weeks. I was also given the VERITY brand of BCG versus the TICE that I’d had before. The composition between the 2 BCGs is different and VERITY is reportly stronger than the TICE and here in Calgary has caused untold misery for quite a few patients. My uro and I have agreed on a watch and wait at this point with cystos every 3-4 months. My bladder has healed up and feels good. My cysto is next week so hopefully all the inflammation is gone.
Hang in, it does get better when treatments are done. It is just a bitch of a process to get there sometimes. (((HUGS)))
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