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! 

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.

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.)

Hi everyone

I haven't posted for a while but I'm interested to know if anyone has experienced or is experiencing anything like myself. My BCG treatment was stopped after 12 rounds due to the severe pain I was experiencing. That has now been over a year ago. My latest cystoscopy shows the bladder looking good and healthy and no signs of regrowth from the MRI scan. My urologist has tried numerous treatment to resolve the ongoing pain that I'm suffering but to no avail. I have subsequently been referred to a pain specialist who has tried a steroid injection which did absolutely nothing. They presume that I have had some neuropathic injury possibly from the treatment. I suffer day and night with the most excruciating pain in my urethra region that feels like broken glass/burning both before and during urination. The only way to relieve the pain for a period is to urinate. It feels like I'm going into a torture chamber every time I go to pee! When I experienced these symptoms in the early days they went within a few days after each treatment. Now a year or so on the symptoms haven't subsided at all. Incredibly frustrating and demoralising, especially as they don't know how to treat me. I'm hoping the next step of trying a pudendal neuralgia block will do something as the pain is definitely in that region. Keen to hear if anyone has had similar issues and if treated, what was successful. 

Hsy capey,

Currently expiriencing everything you are im 6 weeks post my 9th treatment and treatment has now been cancelled im more or less bed ridden (only 35) awaiting further biospys now have tried betmiga and tamsulosin both gave me an allergic reaction.

The urethral pain is so intense and seems to come in attacks and durong an attack incant urinate until it starts to ease.

I have very poor flow peeing 50+ times a day pain is up and down if my pee is clear its not too bad other than hard to start and onky peeing between 30-100ml at a time.

Any kind of walking seeks to bring on an "attack"  sitting is almost impossible most of the time too.

There seems to be some evidence that pelbic floor issues can arise from catheterization particularly the nasty 3 way massive ones and that something called biofeedback and pelic floor. Training can help this is what I want to discuss next with my consultant. 

Not sure hiw youve managed this for a year pal you have my deepest sympathys its only been 6 weeks and ive had some very dark moments already not sure i could csrry on like this for a year or more id rather them remove my bladder. 

Hope youve made some progress since this post and it would be nice to continue to hear how your progressing.

Garry 

Well well, just got notified by email that this thread has posts. Sorry to hear these stories of chronic pain. Four months on from my 12th BCG, and I am quaffing co-codamol, neurofen, amitryptiline and cimetidine, with movicol and senna to battle against the codeine. The pain is nasty and rarely subsides, the flexible cystoscopy showed a red raw inflamed bladder so BCG now paused, on to occasional looks up the tube to see if cancer is returning. Cancer seems to have been removed, but the day to day price to pay in pain is quite an eye opener. My sympathy to any and all fellow travellers; it's a *** tunnel to pass through isn't it?

Of course, there's no guarantee of passing through the other end of the tunnel and finding yourself in the physical world rather than the spititual realms. I'm not at all sure I've prepared myself for that possibility yet. What larks, eh?

Hi Gary

Sorry to hear about your struggles. I can only but sympathise. My consultant stopped the BCG treatment as well, due the pain. I have been seeing a pain specialist as the consultant didn't know what else to do to resolve the pain as everything he tried didn't make any difference. The pain specialist has tried various medications from Amytriptalin, Gabapentin and even Morphin. None of these did anything for me and the side affects were not pleasant. I have had a steroid injection into the pelvic area but even that did nothing. I'm now not on anything and trying to cope and treat myself as naturally as possible. I drink loads of water and the hot drinks I have are herbal teas (Tumeric and Fennel). I have cut out caffine and alcohol to keep all stimulants away from my bladder. I have also changed my diet dramatically and eating loads of fruit and veg and only having meat once a week (very hard for a South African!!). Although I still have the pain which comes on when I need to pee and then painful to pee, the intensity has eased dramatically. I have also started drinking water throughout the night when ever I wake up from the pain with the need to pee. I found this has reduced the intensity of the pain that I was experiencing first thing in the morning and usually lasted for a couple of hours. The pain specialist seems to think that the pain is related to a combination of the treatment which agravates the lining of the bladder wall and instrument damage to nerve endings (all the cystoscopies and catheters we have to endure. I had my last cystoscopy a month back and the urologist says my bladder wall lining couldn't look any heathier, so I'm convinced that what I'm doing must be helping to some degree. My consultant says that my case is unique (not that is a comfort) but it's made me determined to get through this regardless! It's coming on 2 years of the pain and if I look back now, the pain has definately eased up compared to the intensity and frequency of before. Keep the faith and hang in there!

Great to read some new posts on here.

Just got back from my first post tumour op Cystoscopy. Had the 6B CG, I was flying until 5, when my prostate started a wee bit of bleeding  I had the Covid vaccine the next day and it went downhill from there. UTI, flu, blocked cynuses, ached, tiredeness and pain. Not sure which was which to blame, more the bcg I think.

I kept no.6 down with hopping around for the last 10 mins a bit.

Cystooscopy showed inflamed bit, which I reckon is where the cut was. This I can feel if I sit in a certain position, drink more than a bit of booze, or have sex! All the fun goes in this game. lol.. 

So nervous wait now for biopsy result. Did not expect this to happen just 3 months post op, Use ibpropofen to help, which it does. The odd thing is, if I move around, even for long walks etc, I am fine, no pain for hours. Shame I have a desk job!

Of course in this process, the next thing is more treatments. The good thing is there are plenty of survival stories on here, which gives me faith,