I just finished my 6th treatment Friday and I have spent the last 2 days in bed. Very tired and chills and sweats and don't feel like eating. Trace blood in the sample I gave them but not enough to postpone. Glad its over.
I have had 12 treatments, 6 then 2 3's. The last six I also had the chills, sweats, very lethargic, some spot bleeding, frequency and some burning for about 12 hours. These side effects lasted about 24 hours.
I also had a rash once with hot flashes.
10 years 11 months ago - 10 years 11 months ago#26253by Alan
My uro had me on a different protocol as he believes in 6 instilllations, rest 6 weeks with a cysto then 6 more instillations and that is it with the ACS suggestion of checks every 3 months until 2 years, then 6 month etc. My response is only to let you know I passed small amounts of spotting blood twice (I think the 3rd and 10th) instillations. Somehwhat an expected side effect as long it isn't prolonged. The last 2 (11th and 12th) I couldn't hold the BCG an hour. Many URO's believe as little as 30 minuters is therapeutic and almsost all allow for smaller strength if you have worsening side effects. Also, they should do a urine sample before any instillation to rule out bleeding or infection, which also happened between my 7th and 8th-had to wait 1 week. I had mild spasm after every instillation and mild pain urinating for a day.
Message here is everyone is different and as many would say listen to your body and communicate with your URO.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Thanks for all the responses. Yes, they check my urine before each treatment and I take an antibiotic after the treatment. The blood could be because I am not relaxing when the nurse caths me, I "flex" or "spasm" when she is near the end. I have one coming up tuesday, I will let you know. Bless you all.
I had progressively worse responses also, but visited Dr. Lamm in Phoenix and my Uro went with his protocol - diluting the dose by a third. Starting to get more response even at that dose, so may be able to cut it back even more. From my understanding, you can cut the dose or the time you hold it. Good luck.
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment