Hello Capey,

Good to hear from you & that you also confirm that some of us seem to suffer unduly from these side effects of BCG.

I note your Urologist has no answers to the problems - this seems to be the same comments from consultants in general. It's just a pity the possible effects were not more clearly explained at the start - I was told it would likely be very uncomfortable for a few days, including blood in urine, but it was not mentioned that it could go on for weeks and weeks! I beleive many patients are lucky enough not to suffer longer term effects but a significant number also get our problems.

I have researched masses of info on the internet & it seems that in the USA there is a study / research being carried out into these longer term effects but that could take a year or two before any results or treatments are found.

Also, because the effects of BCG are accumulative it can exacerbate the situation each time you get a further dose. No doubt that is partly why the gaps between treatments are now 6 months - I have no more due until December & hope that this settles down soon.

I went to see my GP who felt it may be exacerbared due to a UTI ( urinary tract infection) & suggested I try some anti biotics. They seemed to reduce the blood in urine & decrease the prickly / burning when peeing, but when the course ended it has all returned as it was before. My GP said there may be another type of antibiotic that could be tried after the initial prescription ( Amoxycillin), but to try these first. I see GP again in a week.

I am also going to e-mail my Urology team / keyworker & expalin the side effects that have been with me since last BCG dose on 17 June. Don't suppose that will result in anything much but it will keep them informed of what is happening & they may find it useful overall to know some people have a rougher time than others!

I will also be able to explain face to face at end of July when I am due a flexible cystocopy to check bladder & will push the consultant a bit to see if he knows of anything that may possibly alleviate the symptoms.

On the previous treatment my symptoms pretty much wore off  after 3 weeks, but not this time, sadly..

I note also you say you feel a lot worse after anything strenuous & it is the same with me. Trouble is that it stops you doing almost anything & is frustrtaing to say the least.

( Have you tried taking double doses of strong gin & tonic - it cures nothing but you don't care coz you are in La La land)!!!!!!!!!!

Best wishes & good luck

Iain

Hi James, I have completed 12 doses, my last being just over 2 months ago. I'm still suffering from severe pain when passing water, and have an aching/pain before I need to go which can be very regular.  My question to you is did your pain/discomfort after you finished your treatment last this long? It seems to be showing no signs of easing up! Some days worse than others. Getting very fed-up! 

I had TURBT mid April 19 ,CIS / Grade 3 non invaisive,   finished the first 6 BCGs five weeks ago , was only affected on the day after a few hours, fatigue , but 5 weeks since it finished I still get minor twinges , not so bad I need pain killers.

I just joined having seen this post , it appear the BCG can affect one for quite a while after ,

Hi everyone! Found all your comments useful! I am going for my 14th BCG treatment tomorrow. Last weeks symtoms were more difficult to manage; sleepless nights as constant throbbing & feeling to urinate every 30 minutes. I do not mind the flu symtoms as they can be controled by painkillers.

i find bicarbonate of soda mixed with water effective; I also drink green tea with turmeric! 

good luck to all! 
 

Update, I have this week had treatment 11 and my trips to toilet are constant both night and day. This morning (two days after treatment) i have spent the whole morning going to the toilet every ten minutes or so, it was so bad that my pee was coming without warning at times. I am glad the cancer has gone but this treatment is something else. It took me several weeks to get over the regid camera which included a trip to my local A&E due to a blockage. I have one more treatment next week which I am not looking forward to and then a 6month break I hope.  

I was originally diagnosed with a papillary tumour at the beginning of 2015 and following a TURBT plus chemo was clear until a recurrence in January 2017 but this time it was found to be a CIS.

I had another TURBT and since then I have been on BCG immunotherapy. I've lost count of the number of treatments but it's a lot. ( the latest was August this year and my next are scheduled for February next year).

The early treatments didn't bother me greatly and I naively thought that the more I got the more used to it I would become but I couldn't have been more wrong!
 As time wore on the side effects became exponentially worse along with them lasting for longer and longer periods.

Until I stumbled onto this forum I thought that maybe I was just unlucky and in a minority but I now think that this is definitely not the case.

Having tried various combinations of pain relief and anti-cholinergics to no great avail, last month I decided to give acupuncture a go and after 6 treatments I feel better than I have done in months.

I thought I would share this as I know how miserable this BCG treatment makes us all feel and I approached it from a position of " nothing ventured, nothing gained".

I should also have mentioned earlier that since the recurrence I have been getting flexiscopes every 3 months and my latest confirmed that I have been clear for 2 years, however the BCG continues to the end of 2020.( All being well till then, of course.)

My life has continued with 24/7 trips to the toilet I am unable to venture far from home and have not been in my car for sometime, so no life. Going to the toilet is painful sudden and then very urgent, sometimes I have to almost run home from town and of course very little sleep as I am up every hour. I am 75 years old, fit and the few years I have left don't want to spend them living as I am, so I am having my bladder out this coming Friday 3rd January, not what I wanted, it's a big operation but I don't want another year like 2019, I need to be able to get out and enjoy life without the constant looking for the next toilet. I had to pass a stress test to make sure I was fit enough , for my trips to the hospita I have had to go by train as they have toilets aboard, on a 40 minute trip I needed to go three times . Just as I get ready to go someone gets in first then I am in trouble as I found out on my last trip, nearly wet myself.

Hi Jorg75, so very interested to read your post , & hope your surgery goes well, do let us know. I had my 12th bcg treatment 8weeks ago & have had 2 ialuril treatments to "reline "my poor bladder, but am in such pain often, having to wee umpteen times 24/7, culminating yesterday in calling 999, as I was in indescribable pain, having already had a trip to A&E   3weeks ago with same, only after i.v. morphine did the pain subside.

I'm due at hospital tomorrow for 3rd(of 8) ialuril installations, but want to beg for removal of bladder, for, like you I have no quality of life now. Fingers crossed !!