Hi John1000, sorry to hear how you are feeling. It may be worth speaking to your physician about this as you may be having a belated reaction to the treatment or even possibly an infection. I'm no doctor but the aching joints and nausea is something that should be flagged up. It is possible to get infections from the repeated catheterisation. Your physician will undoubtly have an answer to treat these symptoms. All the best and I hope you get this resolved.

Capey

Hi Capey thanks for advice I will contact my G.P. but I am feeling a little better this morning I do tend to panic a little so I will wait until Monday to see haw I feel. I like having somwhere to chat I think for me it eases the tension once again thanks. John1000

Well, during my 2nd BCG Session back in November 2021 i had a nasty bladder spasm with the BCG still in my bladder before the 2 hours were up of holding it in there.

It was an awful experience, I felt the BCG shoot up my left Ureter and into my left kidney. It felt like Mike Tyson had rabbit punched me an i fell to the floor for about 15 seconds. The pain was unbelievable.

I told my CNS nurse at my next BCG appoint the next week and she said it was normal to have bladder spasms, so i just took that as the "NORM", anyway I had terrible pains in my left kidney and expressed my concerns to the CNS nurse at my next visits for BCG. She just shrugged it off.

Three weeks after the first  BCG Installations the pain was getting unbearable in my left kidney and I decided to speak to my GP. She put me on Antibiotics and still no joy with the pain. She then arranged a CT-Scan with Contrast, this was 12 weeks later on 24th Feb 2021. They found a 3.7cm growth on my left Kidney caused by the Bladder Spasm and BCG.

The Consultant put me on a 4 week strong course of Antibiotics and still no joy with the pain. So i am booked in for another CT-Scan with Contrast on 18th May 2022. I am on strong Co-Codamol and Lactulose to help with the pain.

I have searched the Internet and found an excellent study in the States that looked at all the various side effects of BCG theraphy and would like to share the link with you all.

pubs.rsna.org/.../rg.2019180014

I just hope the consultants believe me now.

Good luck everyone

Dear Sam60,

Fantastic link, thank you very much. By far the clearest and detailed explanation of BCG.

For me the BCG problem came towards the end of my 12 sessions, with acute pain which sort of crippled me for months.

Hope all goes as well as possible for you, take care....

Philip

Thankyou for your post. It gives me hope for my husband to get through his 6 BCG. He has none muscal invasive and grade 3 same as you had. Tumor was removed  from the lining of his bladder. He is 81 so a lot to deal with at that age. Thankyou aagain.

From Renny

Hi  I've had my 6 th treatment  nearly 2veeeks ago and have been in agent ever since .!the burning sensation is awful it wont go away and I'm weeingbroughly every 30 miss     has any1 had these symptoms  please

Hi Giveup and welcome to the Cancer Chat community.

I'm sorry about these side effects you've been experiencing since you finished your 6th BCG treatment.

Hopefully some of our members on this discussion will share their experiences and advice with you soon but in the meantime, do be sure to let your doctor or specialist nurse about this as they may be able to help ease and treat these side effects.

Our team of cancer nurses are available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m if you'd like to get their thoughts on this as well.

I really hope things start to improve for you soon Giveup.

Kind regards,

Steph, Cancer Chat Moderator

Hello Give up in response to your question I have had a total of 14 BCG instillations ending in September last year. They did stop it because it made my bladder inflamed. I think I maybe one of the exceptions to the rule because of my reaction to it. I still suffer to this day with chemical cystitis brought on by the BCG.

Obviously people react in different ways, some tolerate it far better than others. So my experience of it won't necessarily be the same for you.

Take care Chris

Hi Give Up, also following on from the discussion, all I can say is hang in there and don't hesitate to talk to your consultant as there are some treatments out there that can help relieve the pain and discomfort. In most cases the pain and discomfort does ease over time as your bladder wall linning (which becomes inflamed during the treatment) returns to normal. Unfortunately, I'm one of those along with ChrisSC that has prolonged cystitis type pain and also had my treatment stopped around 3 years ago. But this is not always the case and by keeping your consultant informed about your concerns, they can monitor how to proceed. All the best, regards Capey