What side effects did you have BCG bladder cancer treatment?

After about 4-5 BCG treatments I had to pee about every 3-4 minutes. With medication that extended to 4-5 minutes! My urethra was wiped out. The first BCG I lasted about 1:25. By the 4-5th treatment I was down to 30-45 minutes. I have had to wear diapers from the get-go and have given up - I'm having ileal conduit surgery July 2nd.

I’ve been battling non-invasive capillary carcinoma since 2022. I started out with two rounds of BCG. It brought down my high grade to low-grade after the first round. The next round ended with high grade appearing again. The treatment caused fatigue and a burning sensation in my upper chest. Every time I urinate. Times it was very intense, but thankfully only lasted up to 10 seconds sometimes of pain level of 7 to 8. My urologist didn’t seem too concerned and said she wasn’t sure what that was about.

After the second round of VCG, that was not successful, I was referred to Rochester at the Mayo Hospital. I was thankful to be able to get into a five year trial for my specific type of cancer. Treatments were much like VCG if that I did stay there at the hospital for the hour and a half to two hour treatment. During the treatments, I would have spasming the same hot pain, painful symptoms in my chest. My urology oncologist it never heard of it and neither had the team he was working with. It was suggested that it might have to do with my diabetes.(which is always under control.) since the beginning of the BC treatments, I’ve also been incontinent. I tried one round of Botox, which seemed to help both of the burning and incontinence. But it only lasted a few months.
The trial treatments were very successful and cleared me of any cancerous lesions until this last cystoscope. There is a new small growth. So for now I’ll continue with the treatment until my next cystoscope to see if it’s changed.

For now, my biggest concern is this burning sensation that now often radiates down into my arms and hands every time I urinate. Wondering if anybody has ever experienced that and if so, what’s being done?
My type of bladder cancer happens to be very tenacious. I’m glad my face is strong so I can continue in this long journey.

I had a TURBT in February and started BCG treatment on February 27th with my last of 6 treatments on March 3rd. Everything went well for a couple of weeks. The burning and peeing about every 2-3 hours did happen. However, a couple of weeks later my joints started hurting, especially my shoulders, hips and quads. This pain continued up until the end middle part of May when I finally got in to see a Rheumatologist, and she diagnosed me with "Polymyalgia Rheumatica". I was immediately put on prednisone which has cleared up my joint pain and several other issues. I'm not sure what my Oncologist will do now since the BCG and prednisone does the opposite. My Dr has discontinued the BCG even though she wanted me on a maintenance plan for the next 2 years. If anyone else has had this problem, please let me know. I'm a little desperate for what comes next.

@notaquita I've been dealing with NMIBC with CIS (now aggressive pT1) since 2023, and the rheumatic arthritis in my hands has worsened quite a bit: I can no longer remove the cap from a bottle of water. One, six-treatment round of BCG, nine months of Adstiladrin and now a second six-treatment round of BCG in progress. My rheumatologist wants to perscribe Leflunomide (Arava), but can't due to the contraindication with BCG - similar to your issue with prednisone. The rheumatologist and I have decided that cancer treatment takes precedence over treating arthritic pain, but some days I wonder. If anyone knows anything concerning this issue, I'd be grateful for the information.

@djr5 wow thank you for the information. I'm waiting to see what my Dr's recommend. My Oncologist has temporarily suspended BCG since my latest cystosopy came back with good results. I have a follow up with my Rheumatologist in a couple of weeks. I hoping that both can be treated at same time because my joint pain was vicious. As I would have to lift my right arm with my left to get out of bed. Please keep me posted on your next plan of treatment. Thoughts are with you ❤️

@ella76

Thanks for sharing your story Ella- I have seriuous inflammation in my shoulders and legs with pain. My Right hand idseverly arthritic now and i cant make a fist. I will ask about Steroid treatment now.
Thanks. Chris

@notaquita I have to respond to your and @ella76 posts since I am going through treatment of both bladder cancer and side effects of BCG. Be very careful with the shoulder, hip and thigh pain. I have been diagnosed with polymyalgia rheumatica (PMR) since my 6th BCG treatment. My oncologist has stopped the BCG maintenance treatmens and I am now being treated for PMR with prednisone. I am told by both my Oncologist and Rheumatologist that I can be treated for both. I too, could not lift my right arm in the mornings...I had to lift it with my left to get it moving. Both shoulders, hips I thighs were in horrible shape until I got them moving. PLEASE be very careful with this kind of pain as PMR is something that can lead to Giant Cell Arteritis (GCA). My mother was never treated for PMR and lost her eyesight in both eyes from GCA. I'm hoping that will not happen to me since I am taking presnisone and on a taper program.