Welcome to Cancer Chat Dave.

It's great to read that you've finished the second maintenance treatment after being passed clear following the main 6 treatments although I'm sorry the after-effects you're experiencing are lasting longer than usual.

I know you said the paracetemol is controlling the pain but do let your medical team or GP know about this as they may be able to help. I've had a quick look around the forum and thought you may like to connect with [@Sharonna]‍ as she's having some difficulty managing the pain from her BCG treatment at the moment and you may be able to help each other. 

You can chat with our cancer nurses about your situation as well if you like. They're available Monday - Friday between 9a.m - 5p.m on 0808 800 4040.

I hope this helps and that the after-effects disappear soon Dave.

All the best,

Steph, Cancer Chat Moderator

Hi David.

I agree with jamesmozzer ive also just finished my 10,11,12th treatment & i found i could'nt keep the BCG in my bladder for the full 2 hrs. the pain does get more agressive & it lasts a lot longer. Now after 2 weeks since my 12th i still get lots of pain when i pass water. I will start on 3 more treatments in 1 months time so same as me just hang in there & get yourself well again.

Ray 

Hello David & others who have commented on his post,

I have just seen this as had not visited Cancer Research previously & found the comments & experiences of great interest.

I also have recently completed my first course of 3 BCG treatments following the initial 6 weeks & I found it much more difficult to cope with than the initial 6 weeks. The side effects have lasted some 5 weeks & include the darn nuisance of BCG induced cystitis symptoms so not keen on going to the loo! Having to get up 3 or 4 times per night & can find it difficult to sit comfortably for any length of time & any strenuous activity can bring on the symptoms.Due for anothe cystoscopy in 3 weeks which I gather will then be followed by another 3 BCG's - this seems to be what is going to be the regime for a couple of years.

The effects do appear to be cumulative so will have to be prepared for some more uncomforable weeks in the months ahead. If it works & keeps the tumour from returning I reckon I should be greatful, but it's not always easy!

I will see if I can get a good chat with my consultant at the next cystoscopy & make sure he is well aware of the enduring / ongoing side effects & if there is anything they can offer that might help to smooth things out.

Have changed diet & drinks to avoud bladder irritants just as you have.

Readers may like to have a look at the article re. BCG on the link: www.ncbi.nlm.nih.gov/.../

Best wishes to all.

Iain

Hi. My first post. I have just had my cystoscopy following my 12th BCG treatment. I agree with others that the first 6 are a breeze, the second 3 more painfull, and the last 3 very painfull and drawn out. I asked for an extra weeks break between 11 and 12 to recover. With mid morning treatment most of the effects were over by ~6 in the evening at the beginning sessions, by the 11th and 12 I was still in considerable pain at midnight. I have no idea if this is typical.

I am ~18 months since the original operation to remove the tumour and had long waits for the cystoscopies, all of which have been clear. Great to know but like most preventative treaments you have no idea what would have happended if you had not had the treatments. Just like the painkillers I take, currently Ibuprofen, and sometimees Temazepam too to get some sleep; would it hae been a bad night or very bad night if I had not taken them? I frequnetly fall asleep at odd times during the day now.

My "team" advise me that not many make it to the full 3 years of treatment possible. How many sessions that means I have not asked. I have not decided or been asked when I might say stop yet, or even if it is going to be my choice.

Hello dickie - I just had my 10th dose of BCG 4 days ago & no problems so far re. side effects. That is quite a relief after the last time, but as I have 2 more doses to go I will wait & see with fingers crossed. Apparently, according to my consultant & keyworker these effects vary greatly from person to person & also in severity. Some people get no after effects at all, some are moderate & others have to ask for treatment to stop or to be delayed.BCG treatment has an excellent record regarding cures in the medium & long term although why this is so is unclear & research is ongoing.

If you can stick with the treatment my personal opinion is to do so & the regimen lasts for up to 3 years with 3 doses every 6 months followed by flexible cystoscopy to keep a check on things.It's all a bit of a trial at times but better than radical surgery!

My cancer was non muscle invasive, than goodness, but was a grade 3 tumour which is less good as is more likely to re-occur without treatment, so BCG worth sticking with I guess! Maybe the picture will make you smile & remember, when you visit the urology clinic 'Urine good hands!

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No pain killers I am able to take help much but I was advised to drink loads of water - 2 litres a day, because it keeps urine acidity low which I found does help.

Having odd daytime naps is not a problem, I do that also.

Anyway, best of luck.

Nice to hear you guys are going strong  , I have not posted for a while.

So I just had doses, 16 and 17 of 24, my reactions were severe , I managed 50 minutes with dose 17, and then it had to come out , as I say the reactions were severe , I kept my appointment with the BCG nurse, we discussed how it had gone  and the conclusion  was to cease further treatments.  Now I have completed 17 treatments,  and considering  the side effects   feel I have done enough,  now the machinery is in place to keep an eye on me with cytoscopy flexi and rigid.

I know that the BCG affects are different  case to case.

I am happy to discuss any aspect of my experience,  and so if I can help at all just shout out people. 

Hello.

Just briefly, i was diagnosed with stage G3 bladder cancer back in October of 2015.

i started my corse of BCG treatment in January 2016 and had 2 years of it (around 22 doses) i did loose count.

like you, i was fine and i must admit, "cocky" for the first 3-doses but after that i was bad, fealing sick, stinging pain down the eurethra and lots of toilet urgency and loads of other side affects you may already know about.

back to the present, i am very thankfull to all concerned, the consultants and the nurses administering the treatment that i am still cancer free but i am now left with an intermitant stinging sensation down the euethra that some times stops me in my tracks and leaves me doubled up in agony especial when i urgently need a pee.

i asked the consultnats about this condition and was told that it was a "trade off" from all the treatment and that "at least you still cancer free".

where as i'm greatful to be cancer free still, the condition i'm left with i'm unable to get answers to, one of the nurses said it was down to the strength of the urine and to "make water your friend" but this is also difficult when your left with reduced bladder capacity due to the treatment.

I CAN'T GET ANSWERS, we shouldnt be left in this condition.

if i had known all this before treatment, i would of had them take the bladder away.

Sorry if this doesnt give you the answer you were looking for.

Hi Trev

I know how you feel I am exactly the same I’ve had this pain for months now along with sleepless nights i have just had my 27th course of bcg a week ago I feel the same as you and thinking of having the bladder taken out if it comes back again at least we could get on with our lives instead of being tied to the hospital for the rest of our lives