Thanks Swarmy, That is good advice to drink allot of water everyday. It keeps flushing the bladder and I believe it can reduce your acidity in your urine. From what I read the "bad' cells like acidity. I'm sure it's good for the kidneys as well.
My 1st attending Uro Nurse after TUTBT was a prior Army medic.... I was career Army NCO.... we understood each other... she was a God sent in training me. Rule # 1, 2 & 3 she said was drink water.... a gallon a day after scopes....minimum of 4 liters per day on daily bases. I attribute that fluid intake to my ongoing success near 4 years now T1-High Grade. My VA doctor also told me for every cup coffee I should drink 2 cups of water just to displace the diuretic effect of coffee.
I think the key to minimizing BCG for me is drinking a ton of water right after the two hours is up, It helps get rid of the burning and cleans all the residual BCG out of the bladder. The only adverse effects I had besides the burning through my 6 installments is a minor sore throat and some achy joints a few days after, but I'm not even sure that was from BCG or just life. If the BCG is effective it will be well worth the downsides to it.
I enjoy reading all the posts to see how everyone is doing and maybe pick up some tips along the way. We're fortunate to have Sara Anne, Joe and others that provide allot of inspiration and expertise to us along our journeys. I'm following your thread as well and wish you good luck!
My provider is in the process of removing the whole Roll from the documented BCG process. The empty bladder is the size of a Walnut before BCG is introduced. It is coated no matter what position we lay
TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete
I'm having my 3rd BCG instillation tomorrow. With my first instillation, the nurse really trashed my urethra, and it was very painful to urinate for a few days. On my 2nd BCG, I requested lidocane, and there was huge difference - Much better. I'll bet your bleeding was from the catheter.
Regarding bladder pain or reaction from the BCG, I'm really monitoring this experience, and so far, it seems that I'm getting decreased bladder capacity and some burning at the end of urination on the 4th day after the instillation. There's really no pain on the day I get BCG, or on the day after. I'm not sure if this pain and swelling on the 4th day is coincidental for these last two treatments, or if it can be tied to the treatment. I'll post my findings as I move through this. So far, for me, it's been more tolerable than I expected.
Last edit: 2 years 10 months ago by mikequestions.
Finished BCG installation # 6 today. No side effects except for some burning for a few hours. Now I have to wait until February for a scope and cytology test to see if the treatments were effective. I'm hoping and praying that they work.
I did ask the nurse why I would pass blood after the first installation but none of the other ones and she suggested that it was probably from the insertion of the catheter and not the BCG.
I was also searching online to see how long your immune cells work at attacking the abnormal cells with BCG. I was trying to see if your immune cells only went after the bad cells while the BCG was in the bladder of if there is a lasting effect for hours, days or even weeks. But I couldn't find any definite answers.