BCG is weird, and my brain is not my friend

Hi Mark,

Sorry to hear about the side effects of your BCG treatments.

Yeah the brain can go into overdrive for sure. Do you have a cancer specialist nurse or equivalent you can call? I recall reading on the forum that others have had similar issues, but not had them personally (cramps etc).

People always recommend drinking lot's of water to keep the bladder flushed, so that might help?

Finally I would mention all these issues to your oncology team when you go for your next BCG, if not before if possible. I had "shivers" after one instillation but didn't mention it until the next session and was told to call them next time, so they can test for infection etc in advance.

Hope thing's get better for you soon.

Trevor 

 MarkinUS  Hi Mark, I am afraid that BCG can and often does produce exactly the symptoms you describe I am afraid, so it can be considered “normal”. You might want to contact your specialist nurse / MD to check things out. They might give you some medication to alleviate the symptoms, which might help. You might find this leaflet from the British Association of Urological Surgeons useful, it lists possible BCG side effects and their frequency of occurrence. https://www.baus.org.uk/_userfiles/pages/files/Patients/Leaflets/BCG.pdf

If in doubt, check it out with your medical team.

Leo

Thanks, Leo1 and BFG 
I do actually, intellectually know I'm tolerating BCG pretty welll and my side effects are probably about average at this point.
And thanks for the link to the pamphlet, which I've downloaded.
I think that at this point in the game my over-busy brain is biggest side-effect.
I chuckled at myself just yesterday when I realized I was gauging my sense of happiness or well-being on the feeling of my lower abdomen and the color or my pee.
Part of me just wishes my scope date was here; another part dreads it.
I suppose this all is just par for the course.
So glad this forum is here; gives me people who have been down the same path to talk to. Thanks all!

Thank you, friends, for helping me find context.

This one, No. 5, has been my hardest week of the immunotherapy -- especially re the bleeding and the fatigue -- but I know I'm very fortunate. From what I've read, there are people on whom BCG is far, far harder.

All in all, I'm just glad to have the caregivers, friends & family, job and insurance that have. In context, I'm doing just fine.

Thanks for reminding me.

Good for you MarkinUS, its not easy this journey and some get it harder than others. Luckily we are all in it together good and bad times. you are not alone friend, take care of yourself 

Well, BCG install No. 6 was this afternoon.
Now I'm literally laughing at what I used to think were side effects!
Now I understand what people who've written about urgency, burning and bladder spasms were saying.
Still got one hour of bleaching the urine to go, but I'm doing OK. And I do know I'll be fine ... took the Tylenol (paracetamol), hydrating, taking it easy. Don't have to work for a couple days, so I plan to go very easy on myself.
Still, in no way do I regret doing the induction course, and I'll take more BCG if that's offered or even intravesical chemo. I'd like to try very hard to keep my bladder if that's a realistic option.
Thankful for my caregivers, thankful for all of you! Hope you are doing well.
Mark

Hi Mark,I hope the symptoms settle down as soon.as possible.Best wishes Jane x

@markunUS welcome to the party pal, as Bruce said in Die Hard. It’s a hard gig but keep your eyes on the prize. 

Hi MarkinUS, I hope it all settled down for you and you managed some sleep. You finished the induction which in itself is an achievement ! The 6 weeks is the hardest i have found, quite an endurance test. stay in touch .

Hi mark iam going for no 3 today it’s like being on a roller coaster that’s for sure