To those that answered my first post to this forum, thank you so much for your kindness and information. I am not a patient. The patient is my son in his early 40's who lives in another state and begins treatment today for the six weeks.
You know how mother's worry. We plan to be with him during later treatments.
Men are supposed to use condoms during the whole course of treatment, but I have no idea about if that applies to the spouses of women getting BCG...I guess so, any opinions?
It's good that you're preparing yourself for what to expect. Please also remember that some people have no bad side effects from BCG, as well.
Keep in contact with the uro throughout, and report any side effects no matter how small you might think them. BCG can be somewhat tailored to fit the individual, reduced, postponed totally without loss of effectiveness, and that's part of why it's an excellent treatment for high grade, non-invasive bladder cancer.
It's been my non-scientific observation (Im' not a medical professional) that women seem to have a harder time. There's much less data about women and bladder cancer, or women and BCG and bladder cancer, so any complaints, irritative symptoms etc should be given serious attention.
I second the above. My first treatment I wondered what all the fuss was about. The second and third, about an hour or two after the instillation I had urgency and a quite intense but bearable burning on urination. This continued with subsequent treatments and was accompanied by "debris" in my urine. Clot-like stringy matter. The overall malaise I can relate to. And it's only since coming off BCG I realise how insidious it was.
I still went to work throughout BCG treatment, usually the next day. The main thing for me was disturbed sleep due to the frequency of urination on that first night. The docs went through a long list of symptoms the vast majority of which I never had and many of which I suspect were there for coverage but highly unlikely to happen. I did have bleeding and I did report it but it wasn't a problem. I also reported the debris. The docs seemed to also take these symptoms as encouragement that the BCG was doing its work. Which is worth bearing in mind when you're feeling grotty!
It's important that they test for any bleeding in the urine prior to BCG instillation which I'm sure they will do.
Two of my friends were pregnant at the time and I gave them a wide berth during the early days of each tretament. But I was told about the bleach protocol and general hygiene which I followed rigorously.
I would add that I'm a man so the actual sensations after BCG probably differ.
There is a protocol for containing the urine in a dedicated bathroom and using a cup or two cups of bleach after each void, then letting that sit for 20 minutes before flushing. I think this is required for like 6 hours after instillation. I try to keep an anti-microbial handwash close-by for hand washing after wiping, but that may be a psychological thing.
Some of the people who have recorded here have no symptoms at all. The first 2 treatments for me were a piece of cake. The 3rd treatment, in my case, brought about burning on urination and a kind of malaise. This generally faded away by the end of the day.
The things to watch out for are joint pain, fever, bleeding, and flu like symptoms. These symptoms require a call to the Doctor.
Make sure to read the brochure that Rosie was talking about, in case I've left anything out.
Please let us know how it's going for you. The truth is, everyone reacts differently.
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
If BCG reactions occur it usually isn't until the 3rd or 4th treatment as the effect is accumulative. Read the brochure carefully as to precuations and methods to minmize effects and reactions. Refrain from water at least 4 hours prior to BCG, drink lots of water after instillation of BCG. Let the doctor know of any ill effects. There will certainly be a feeling of urgency after the BCG instaillation and possible burning when urinating. Lots of watter eases the burning.