Head keeper Stewart. Hi Dave looks like you and I are at the same state.i have just had my 9th treatment, 9a.m. Today got home at 10a.m.at 11-30am I to couldn’t hold it any longer but soo went to the loo. I am still here and it’s now 3-15pm blood clots are my trouble as soon as i try to get off they come again I have had the shivers for 2 hours uncontrollably they have now eased off. This is normal for me from the start, my wife is continually bringing me drinks to flush out the bladder. Normally last from 7 to 16 hours then have no control for up to 2 days I got an infection after the 7th sitting went to the doctors got antibiotics what just cleared it in time for the next session. I don’t diet at all but exsersise getting up 5 ish taking 4 Gundogs out across farmland then feed birds the rest of the day walking miles the plus for me is I can drop my pants anywhere anytime. Carrying a bag of corn each time to cover strips I am 74 years old this year you can’t drive the fields as they are sodden and have been since September. Good luck with your treatment plus I wear a male  Tena nappy lined with a babies nappy so any soiling I change the babies nappy. Good it’s 4to talk. Going to try to get off the loo now and stretch my legs. Good luck,Keeper.

Hi all i had 15 bcj treatments & it was very painful & difficult to take

but im now 2 yrs clear & i feel good at 74 yrs old.

My advice is just stick with it & i hope you will all get the results that i got.

Ive had 4 follow up Cystoscopies which are nothig really.

Good Luck

Very good news 

Hi

I thought I would add my experiences to the forum as well, for anyone else who is suffering from the dreaded aftereffects of BCG Cystitis. I'm 59 and was diagnoned last year 2019 with a non intrusive bladder Cancer after falling down a WW1 trench on a film set and started peeing blood. I went to my GP who after first giving me a treatment of antibiotics sent me for a flexible cystoscopy at the local hospital where a small florette cancer of about 15mm was discovered. Within three weeks I was operated on and had a TURBT and a Biopsey of the tissue samples taken. Thankfully I was confirmed as having a non invassive bladder tumour but I had a high grade 3 T2 Tumour and the Consultant also took samples from another area of concern!!! 

After the TURBT I spent the next four weeks recovering and peeing various amounts of congealed blood, quite an unpleasent experiance and quite painful. Like the rest of you all, I suffered from the usual Pain, Urgency and Frequencey for which I was advised to take paracetomol. This was next to useless for the pain and I had some prescription Co-Codamol tablets which I used and found that it reduced the pain and disscomfort by about 75%, making life much more tolerable. 

Then I started the dreaded BCG Treatment, the first two or three instilitions where OK and after about two days I was back to normal, but as the six weekly treatments progressed the Pain, Urgency and Frequency got worse and lasted longer, usualy up to five or six days. I carried on taking the Co-Codamol Tablets (30/500) which helped enormously, but they are prescription and you must talk to your Doctor / Consultant before taking them. They can also be addictive, so please be careful.

After the first six week treatment I had a three month break and I was absolutely fine by the end of it, peeing normaly with no pain and sleeping the night through. Then came the next three BCG Instilitions, the first one brought back the Pain, Urgencey and Frequency and as the three weeks progressed it got slowly worse, including getting up six or eigth times a night.  My Cancer Nurse told me that she was very concened and that BCG can actualy destroy the bladder in the long term and ruin your quality of life and she noted that on my records for my consultant. I hoped that the Pain, Urgency and Frequency would subside like it did previously, but unfortunatley it got worse requiring several visits to the Consultant and a course of antibiotics which didnt work. My pee was very cloudy and had several peices of mucuse or bladder tissue in it and I was told this is normal and it would go away over time, which it has to a greater extent. My pee is now clear, with the odd bit of tissue in it from time to time, but I still today get up three or four times a night and have that Urgency and Frequency and from time to time pain as well.

I then had another flexible cystosocpy and a biopsey (the second since my Op) and within 48 hours the pain had subsided enormousley, although I still had the Uregency and Frequency. My Biopsy came back at Xmas clear again, fantastic news and a nice pressie from Santa. I was then prescribed "Betmiga" 50mg tablets to reduce the acidity of my urine which after a day really helped, although at £35 a packet plus the Prescription Fee is a bit steep for a monthly dose. I've stopped using them after the first month. I was also told by my Consultant if it got unbareable to go and buy womans Cystitis Relief medication from the local supermarket, as its over the counter medication. I noted that it shouldnt be used by men but it works and reduces the discomfort and pain when urinating and I dont use it much, but always keep a packet in the car and a packet at home, just in case it flares up again. 

I have recently had a letter from my consultant telling me that after a confrence with his fellow Urologists that I'm going to be taken off BCG and put onto something else due to my reaction, which is a cumulative effect of the BCG which will be administered in May this year.

For what its worth and for the record, on a bad day I find I have an intense burning sensation along my penis while urinating and I also have a slow rate of flow compared to a year ago as if its being restricted somehow, as well as a deep pain between my prostate and the valve that opens and closes the flow. I particularly find that it hurts the most when I finish peeing and stop the flow and the valve bit stings for 5 seconds or so. Ughh. 

I have found that by diluting the acidity of my urin by drinking lots ot water during the day and not drinking cafinated drinks like coffee and tea, helps a lot. Make sure to drink the water at regular intervals during the day, but make sure you know where the nearest loo is where you are working or traveling. I can currently go for a couple of hours without the need to pee but in the car, I carry a small seal topped plastic cup that if I'm caught short I can pull over and use. Remember that peeing in public in the UK is a criminal offence.

I do hope this helps some of you and please keep posting anything that you might discover helps. One previous contributor on here sugested that acupuncture helped him enormously, I might have to give it a go myself if it gets really bad again.

Since I have had bladder cancer I have been very encouraged by the number of people I have come across that have also had it and have survived it. YeeHaa. One gentleman has had it for twenty years others for ten or fifteen years, but all said to stick in there and go the course. Wise words indeed and who knows what cures are in the pipeline. Reading some of the contributers on this forum I feel very lucky as at least I dont have that much pain that I would ask my consultant to remove my bladder. To those of you that are like that, I'm so sorry, I know its bloody agony, Ive been there. Maybe getting a second opinion from a Harley Street Specialist Urologist would be money well spent, if you can afford it. 

Good luck everyone and remember we are the lucky ones, we found the Big C early and get to live, others find it to late and its incurable. 

Jon

Hi

I thought I would add my experiences to the forum as well, for anyone else who is suffering from the dreaded aftereffects of BCG Cystitis. I'm 59 and was diagnoned last year 2019 with a non intrusive bladder Cancer after falling down a WW1 trench on a film set and started peeing blood. I went to my GP who after first giving me a treatment of antibiotics sent me for a flexible cystoscopy at the local hospital where a small florette cancer of about 15mm was discovered. Within three weeks I was operated on and had a TURBT and a Biopsey of the tissue samples taken. Thankfully I was confirmed as having a non invassive bladder tumour but I had a high grade 3 T2 Tumour and the Consultant also took samples from another area of concern!!! 

After the TURBT I spent the next four weeks recovering and peeing various amounts of congealed blood, quite an unpleasent experiance and quite painful. Like the rest of you all, I suffered from the usual Pain, Urgency and Frequencey for which I was advised to take paracetomol. This was next to useless for the pain and I had some prescription Co-Codamol tablets which I used and found that it reduced the pain and disscomfort by about 75%, making life much more tolerable. 

Then I started the dreaded BCG Treatment, the first two or three instilitions where OK and after about two days I was back to normal, but as the six weekly treatments progressed the Pain, Urgency and Frequency got worse and lasted longer, usualy up to five or six days. I carried on taking the Co-Codamol Tablets (30/500) which helped enormously, but they are prescription and you must talk to your Doctor / Consultant before taking them. They can also be addictive, so please be careful.

After the first six week treatment I had a three month break and I was absolutely fine by the end of it, peeing normaly with no pain and sleeping the night through. Then came the next three BCG Instilitions, the first one brought back the Pain, Urgencey and Frequency and as the three weeks progressed it got slowly worse, including getting up six or eigth times a night.  My Cancer Nurse told me that she was very concened and that BCG can actualy destroy the bladder in the long term and ruin your quality of life and she noted that on my records for my consultant. I hoped that the Pain, Urgency and Frequency would subside like it did previously, but unfortunatley it got worse requiring several visits to the Consultant and a course of antibiotics which didnt work. My pee was very cloudy and had several peices of mucuse or bladder tissue in it and I was told this is normal and it would go away over time, which it has to a greater extent. My pee is now clear, with the odd bit of tissue in it from time to time, but I still today get up three or four times a night and have that Urgency and Frequency and from time to time pain as well.

I then had another flexible cystosocpy and a biopsey (the second since my Op) and within 48 hours the pain had subsided enormousley, although I still had the Uregency and Frequency. My Biopsy came back at Xmas clear again, fantastic news and a nice pressie from Santa. I was then prescribed "Betmiga" 50mg tablets to reduce the acidity of my urine which after a day really helped, although at £35 a packet plus the Prescription Fee is a bit steep for a monthly dose. I've stopped using them after the first month. I was also told by my Consultant if it got unbareable to go and buy womans Cystitis Relief medication from the local supermarket, as its over the counter medication. I noted that it shouldnt be used by men but it works and reduces the discomfort and pain when urinating and I dont use it much, but always keep a packet in the car and a packet at home, just in case it flares up again. 

I have recently had a letter from my consultant telling me that after a confrence with his fellow Urologists that I'm going to be taken off BCG and put onto something else due to my reaction, which is a cumulative effect of the BCG which will be administered in May this year.

For what its worth and for the record, on a bad day I find I have an intense burning sensation along my penis while urinating and I also have a slow rate of flow compared to a year ago as if its being restricted somehow, as well as a deep pain between my prostate and the valve that opens and closes the flow. I particularly find that it hurts the most when I finish peeing and stop the flow and the valve bit stings for 5 seconds or so. Ughh. 

I have found that by diluting the acidity of my urin by drinking lots ot water during the day and not drinking cafinated drinks like coffee and tea, helps a lot. Make sure to drink the water at regular intervals during the day, but make sure you know where the nearest loo is where you are working or traveling. I can currently go for a couple of hours without the need to pee but in the car, I carry a small seal topped plastic cup that if I'm caught short I can pull over and use. Remember that peeing in public in the UK is a criminal offence.

I do hope this helps some of you and please keep posting anything that you might discover helps. One previous contributor on here sugested that acupuncture helped him enormously, I might have to give it a go myself if it gets really bad again.

Since I have had bladder cancer I have been very encouraged by the number of people I have come across that have also had it and have survived it. YeeHaa. One gentleman has had it for twenty years others for ten or fifteen years, but all said to stick in there and go the course. Wise words indeed and who knows what cures are in the pipeline. Reading some of the contributers on this forum I feel very lucky as at least I dont have that much pain that I would ask my consultant to remove my bladder. To those of you that are like that, I'm so sorry, I know its bloody agony, Ive been there. Maybe getting a second opinion from a Harley Street Specialist Urologist would be money well spent, if you can afford it. 

Good luck everyone and remember we are the lucky ones, we found the Big C early and get to live, others find it to late and its incurable. 

Jon

Hi Jon

just to let you know cancer patients get free prescriptions on the nhs just ask your gp for an exemption card.

good luck

pomy

Hello Jon,

Interestingly your experience is almost exactly the same as mine. I have recently had my 15th dose of BCG on 30 December & the side effects are virually the same as yours & very uncomfortable indeed.

My urology CNS confirmed that the effects of BCG are cumulative and therefore can get worse for some patients whilst others seem able to sail through the full course with little problem.

It is now 4 weeks since my last infusion & the effects have been driving me crazy & not been able to get a full nights sleep for many weeks due to frequency needs followed by the horrible burning / stinging sensation and pain in the perineum region, which also means it is difficult to find a comfortable way of sitting down & walking around town or other activities like gardening etc., quickly become very uncomfortable due to a stinging sensation at tip of penis which seems very sensitive.

At the end of the previous 3 instillations it took almost 6 weeks before the effects wore off.

I am due another 3 doses at end of June which will be preceed by another cystocopy & a CT scan has also been requested.

I think most patients manage the full 3 years of maintenance treatment without too much proble, but unfortunately some of us get these nasty effects which can be difficult to deal with & curtail a lot of normal daily activities.

However, if the treatment ultimately works & the cancer is defeated that will be great & probably worth it all.

Incidenatlly, what is the brand name of that womens cystitis relief your tried & found helpful - I perhaps ought to try it.

Best wishes & good luck.

The picture attached shows that with your Urology team urine in good hands!

Iain[[]]

Hi Iain and James

Thanks for your replys. Iain I used both Waitrose and Tesco's branded Womans Cystitis Relief if that helps, they are all basically the same and are Sodium Citrate. They come as a sachet of powder which you mix with a glass of water and drink, usualy cranberry flavour. I found it helps reduce the pain quite a bit, but it dose say on the packet "Not to be used by Men or Children" for some reason. If that worries you, you could try the old, teaspoon of Bicarbonate of Soda in a glass of water trick, to reduce the acidity of your pee. My wife used to use it, now she just nicks my Cystisis Relief, typical.

For what its worth, I am getting slowly better, but it's hard just gritting your teeth and getting on with it. James you seem to be well down the path on this, does it go away completely in the end and we get back to normal in the long term? I, like you and Iain, have this inability to pee like I used to and have a restricted flow now.

Best reagrds

Jon  

Hello Jon, in answer to your question, at the end of treatment a new journey starts, i found that as time goes by the whole situation does slowly start to normalise, i was surprised as to how long this took, it's another phase of recovery.

here i am, some 6 months after treatment , i find that i only get up once at night now, i still find i get niggly problems, both bladder and bowel, but you contend with these as they arise, but the upshot is i'm thankfully painfree and normalising.

good luck going forward Jon.

Regard james

Thank you James, at least now I know it will eventually subside and go away.Tthe hard part for me has been working and earning a living through this. Luckily I work in the film and TV industry and once on set, either on location or in the studios, a Loo is not far away. I'm still at the stage where I get up anywhere between three and six times a night and I have a much reduced bladder capacity now, with a reduced flow rate. I've still got another year or more of maintainace instilations approximately six to nine depending on the my Consultant, but Ha Ho, I'm one of the lucky ones with a non intrusive tumour and I'll be going onto a different immunothearpy drug in May, instead of BCG. That will be interesting and I'll let everyone here know the outcome of it.

Kind regards

Jon

It's been fascinating reading this thread as I can identify with you all. I have only had 9 rounds of BCG and I have had to be taken off due to the intense pain. My first 6 treatments went okay with mild pain that went after a week or so. But after my next 3 treatments, I have been suffering badly. Since then I have had 2 cystoscopies, one to take some biopsies from all over the bladder and the last one a week ago, to see how the bladder looked. The good news is that I'm cancer-free but the pain has been getting progressively worse. My Urologist has put this down to the BCG and how my bladder has reacted to the treatment. Hence the decision to stop the treatment. The pain is so bad at times that it cripples me. I then have to hobble to the loo as I know that this is the only way to release the pain, which in it'self is extremely painful. As the pain has been going on for several months and showing no signs of easing up, and unfortunately pain killers do nothing for the pain, they have decided to try a 6 week course of Cystistat. This apparently lines the inside of the bladder and helps soothe the pain much like Sudocrem would do to a bad rash on a baby's bum. I'm hoping this will do the trick. If not they will be referring me to a pain specialist. All the best to everyone with the on-going treatments.

Hi Capey

Your not alone mate I know how you feel, I was like that a few weeks ago. The good news is I'm getting better every day now and its a slow proccess and its been nearly three months since my last instilation of BCG. I'm now feeling 80% better if that helps reassure you. On my last Cystosocopy before Christmas my bladder was red and very inflamed and like you it bloody hurt like hell at both ends. I felt like I wanted to pee all the time, it was a constant urge and when I went to the loo, I could only pee a tea spoonfull. I also had that constant urge to want poo as well, in fact I felt constipated and very uncomfortable, making sitting down and driving a very unpleasant experience. 

My consultant tells me its BCG Cystitis and it will go away in time, which as time goes by is quite correct. My Cancer Nurse also told me that BCG can destoy the bladder in some people and insisted that I told her my pain levels every week I went for an instilliation, and if it got to bad, she wouldn't administer it.  

My Consultants is brilliant and just before Christmas, said he was going to take me off BCG, as it was causing me so much pain and he would have a conferance with his collegues, to see which alternative drugs they could administer instead. This they have done and I'm back on again in May, hopefully with this new Immunothearapy Drug it will be a lot less painful. I get the occasional flare up, particularly when I drink coffee and not enough water or drink to much wine.

Well you can't suffer all that pain and discomfort without having at least something to look forward to and  enjoy now and then!!!  As I said to Iain, my Consultant told me to drink at least three litres of water a day to flush your bladder through and if it gets to painful try using Womans Cyctitis Releif from your local supermarket to neutralise the acidity of your urine to reduce the pain. As I said in my previous posts, it does say on the packet "Not to be used by Men" not sure why, but I can tell you it helped me with the pain control, when going for a pee and I only used it a few times when it got unbearable. I'll let you decide whether you use it or not. Keep in touch and I hope this helps a bit with were you are at the moment. 

We are alive and kicking, sod the pain it will go away in time.

Jon

I guess all/most of us who have had BCG treatment are now classed as vulnerable people with regard to Covid -19. I certainly am after 2 years of treatment (15 sessions). I am now in the wait and see stage having ceased infusions but with another cystoscopy in 2-3 months time; all being "well".

There is news that those who have had TB vacinations in their youth are "just maybe" less likely to get serious virous  infection now; so I wonder, if this may be true, where this leaves us who have been having BCG infusions. Are we likely to be more or less susceptible or will it depend on where we are in the treatment cycle.

Hi Dickie

Apologies for the late responce, but your post went into my junk box. Strangeley enough I was expecting a letter from my GP telling me I was an "at risk" or "vunerable person", I didnt get one. I'm still awaiting my next round of infusions due now, but I think I will have been put on the back burner due to Covid 19, I have to wait and see. 

Having read the articles about TB and BCG injections being used to fight against Covid 19 I suspect that we are in a really good place, Ive had twelve of them now, so hopefully my immune system is up and fighting.

Hi John. I had a letter from the hospital group that was treating me telling me I was vulnerable, (10 -14 days ago) and a week or so later from my local surgery group. I registered with the HMRC system (google it). You will need your NHS number, but don't know if you can do it before you get the letter(s). Try it. I really did it so I could place an order with the supermarket systems, which I had never used before, and get some priority. Lots of refusals but eventually Tesco contacted me to offer me a fast delivery, this Sunday. Sainsbury's still don't recognise me as vunerable, so far.

I suspect we will have to wait some time to find someone who thinks they know if we are more or less at risk because of the BCG treatment.