I'm halfway through my first BCG treatment (had treatment #4 on Wednesday!). The first two weeks were fine, just some minor cramping the first day. After treatment 3, I was thrown for a loop. Monster level fatigue, headache, achy all over. I went to my urologist when I couldn't take it anymore (meaning I couldn't power through and go to work) and he gave me a broad spectrum antibiotic (just in case) and a day of rest. That week's treatment was cancelled due to it, but only for a week. Urine culture came back negative for bacteria, and I did feel fine in a few days. I think it just hits some of us harder than others at random times. Good luck.
First cysto and TURBT 5/23/2016
Nephrostomy placement 5/24/2016
Second cysto and TURBT 6/20/2016
Papillary urothelial carcinoma, mostly low grade
No stromal invasion, no metastasis
Original tumor size (by CT): 7.3 cm x 4.8 cm x 4.8 cm
Starting BCG 8/21/2016
Dx 5/25/2016, First cysto and TURBT 5/23/2016, 2nd cysto and TURBT 6/20/2016, Original tumor size (by CT): 7.3 cm x 4.8 cm x 4.8 cm, BCG 8/31/2016-10/12/2016,
Cysto 11/15/2016: Recurrence , TURBT (#3) 12/5/2016, BCG x 3 weeks, off 1 week x 1 year (end Jan 2018)
Cysto 4/5/17: NED!!
Yes, all can be side affects. The worst part for me was lack of sleep for a day or so as I had to void every 45-60 minutes during the night. I always reminded myself this so much easier and doable than chemo!
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.
No, I never had a stiff neck or headache. My symptoms were mainly flu-like symptoms: chills, very low-grade fever (99-100), aches, and fatigue. I also had bladder spasms and some joint pain (reactive arthritis).
All of the symptoms except the joint pain subsided within 24 hours or so.
Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.
Yes to headaches, and other side effects. Some here report no or mild side effects, other of us, including me, get slammed for 2 or 3 days. Below is a link to side effects at Drugs <dot. com, my on-line go-to substitute for the PDR.
The BCG is so promising that I will accept the side effects, whatever they may be. 17 doses so far.
What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3