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. 

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! 
 

Hi Sof. As you can see we don't chat much. What proportion of those having the treatment we represent is anybodies guess but it gives you some idea for comparison. BCG (for bladder) has apparently being in use for ~40 years so not new although when I saw one of my eperienced Dr. groups GPs recently he/she had little or no knowledge of it and I was her first patient having it, so don't assume your GP will be uptodate on symptom handling.

I have had 15 now and awaiting next cystoscopy. Some of my short term pain (1(2) days after) I suspect I can now attribute to catheta handling skill of operator. Maybe its me (physically) but if it is not quick and straightforward then a painfull evening often follows. This got worse as the treatments progressed, although I had the same operator most of the time.

I fill in a problem summary sheet each week, but it is only filed in my treatment record; no-one collates the data and makes use of it.

The Oxybutinyn hydrochoride I was taking to ease bladder pain has been abandoned for a slow release version Darifenacin. The appalling dry mouth/lack of taste of the former has disappeared; whether it is effective still to be decided. It is really only at night I have problems. Nightly Ibuprofen handles the early nighttime. I think what and when I eat and drink in the evening plays a significant part of how good a night I am going to get. I always have a little something before the pain-killers though for safety. My last hospital urology consultation was cancelled at a days notice. Typical now I gather.