Hiya trev and pony.

You guys have done well to get as far along as you have, I gave up after 17 as the treatments side effects were so severe.

I had very similar side effects,  mine subsided to an acceptably uncomfortable level after about 3 months,  and continue to subside long term, this will be at the end of my treatments now, so I will get to find out the longer term effects,  past the  6 months. 

Hello , I have just joined this site today and it's interesting to read all your posts. I have had my first 6 treatments and started my 3 maintenance treatments last week so 2 to go. I have retired from work not sure how I would have got on otherwise with all the trips to the toilet now. Looks like I may have some horrible days coming.

Positive mental attitude  Jorg , all the best 

Hi & good luck, I had 15 sessions of BCG & while it was unbearable at times it's best to let the experts get on with the treatment.

IvI' just had my 2nd flexible cystoscopy & it's shown as bladder normal which is fantastic. I'm still classed high risk bladder cancer but I feel great.

Mine is also classed as high risk I had 15 bcgs and was clear for 4 years then it came back, then had two operations to cut it out and another 12 bcgs, hope yours dosnt come back because the agony for me is tenfold the second time around 

Yeh that's the part I'm dreading if it comes back.

I'm 1 yr clear now so I'll just face up to it if it should happen.

Thanks

I would be interested to know about long term effects with those more experienced. After 12 treatments and all clear I am booked for no. 13 in September. At present I have permanent pain, manageable during the day but difficult at night without pain killers, and rarely sleep more than a few hours before waking, without drug assistance, and then it is on/off for the rest of the night. I have been prescibed Oxybutinyn hydrochoride which for me helps with urgency etc. but apparently has little eefect on pain levels at night. It also gives me a permanetly dry mouth. Not pleasant.

Notice in todays news the use of a variant of the common cold virous instead of BCG for what appears to be the same treatment technique.

Hello dickie,

I read your post with some interest as experiencing similar effects, albeit with some slight differences.

I also have recently completed my 12th does of BCG & am due a flexible cystoscopy at end July to see how things look.

Ever since the last dose of 3 installations I have had almost constant pain throughout & particularly on passing water - I am told it is due to BCG related cystitis - and it really is very uncomfortable, in particulat through the day - stinging / burning sensation. It can be almost impossible to find a comfortable way to sit & not able to go out & around town etc. as too uncomfortable & always worried may not be able to get to a loo quickly enough.

I find lying in bed can sometime relive the symptoms & take frequent doses of Paracetamol with limited effect. It is rare that I can sttay asleep for more than about 1 1/2 to 2 hours without needing to get up for the loo. Cnnot take much in way of a different pain killer becausd am also on heart medication which clashes with many other drugs - bit of a beggar really!

From research & speaking to urology team I hear that some people can take the whole 3 year course of BCG with little by way of side effects but some of us are cursed with this cystitis proble - or in some cases it is because the treatment causes an infection requiring antibiotics.I gather this can be checked by having urine samples checked so might be worth asking your urology teasm or GP. Unfortunate not all GP's have too much experience of patients suffering these side effects & they refer you back to your urology team. If you have a Keyworker - which ought to be the case - ask to speak to them & give full details of problems.

I also read abot the new treatment you refer too, but it may be a bit of a wait for that as not yet generally cleared for automatice use or if suitable if you have been receiving BCG.

However, on a more positive note I undertand that BCG does work in the majority of cases for non invasive tumours & although it is acknowledged that for some people the side effects can be a bit fierce it usually works & clears up the cancer. 

I should likely be thankful that it is non invasive tumour as the other diagnosis would not be so good!

Mine is, as mentioned, non invsaive but the tumour removed was a grade 3 so therefore more aggresive so will try to see the treatment through to the end. Next BCG dose of 3 for me is due in December, so have a few months break, thank heavens!

Hang in there & best wishes.

Hi.

As I previously said I had 15 sessions of BCG then I got clearance in October/November 2018. I've had another Flexi cystoscopy in June 2019 which also showed clear but this week I've started having strange bladder pains & after a full night's sleep I feel my bladder is totally empty , I am going to monitor this & report to my urologist. Anybody else have had the same.?

Hi Iankb, It was reassuring reading your post. Like yourself, I have completed 12 doses. The last cystoscopy showed up clear. Much like all of you on this chat, I have been suffering from intense pain and frequency. It's been 6 weeks since my last lot of BCG and at times the pain feels worse and more frequent. I have been searching the internet to try and find answers but to no avail. I stumbled across this forum to my delight to read that I'm not the only one and that it seems to be more common than not to experience the pain and discomfort that we are experiencing. I have spoken to my urologist and he doesn't have any decisive answers except that the BCG inflames the inner bladder lining. My urologist is encouraging me to continue the treatment due to my young age and aggressiveness of the cancer although it was non-invasive. I just wish there was some medication that can relieve some of the intense pain! I have changed my diet after doing extensive research on diet and disease and now eat loads of fresh fruit and vegetables. Healthwise I feel better for it but frustrated that I'm unable to exercise as this just aggravates the pain. I also drink loads of water and have stopped drinking caffeine drinks. I feel that if there is anything I can do to reduce the chances of the cancer returning then I will give it a go.