Reply To: Follow Up

[marysue]

I was diagnosed with TaG3 papillary tumours and a couple of CIS spots in 2008 and had one reoccuring papillary tumour of same stage and grade in 2010. After my first TURBT I had 6 weeks of BCG. My symptoms were the typical flu like of headache, muscle ache, fatigue, some bladder irritation. I also experienced digestive upset, brain fog and some depression. The side effects were cumulative meaning they steadily got heavier as the treatments progressed. Tylenol and hot baths with Epsom salts and a lot of self pampering and rest got me through it. The side effects wore off within the month and life got back to normal. I had to do a second 6 week round plus 1 year of maintenance ( 3 rounds of 3 treatments each) for my reoccurence. The side effects were much stronger and I had to up the pain killers as the muscle pain and headache were way worse. I changed drs in the middle of this and my new uro agreed to reduce the dose which helped me finish the treatments. I experienced side effects with the very first treatment. FOr me I found I was woosy within 2 hours of finishing the treatments. Since you are going into this for the first time I suggest that you have someone come with you to drive you to and from the clinic or if you are staying for the duration of the treatment drive you home until you know how the drug affects you. Others on this site did not experience what I did. Some had more bladder inflammation and pain. I only experienced bladder irritation and burning for a bit and then it wore off. I was working during the second round and booked the day of treatment off and the following two days. The day after treatment for me was the worst. I would feel like I had a pretty good dose of the flu and would sleep the better part of the day. NOrmal side effects include low fever, mild aches and chills, bladder urgency and irritation. IF the side effects get really strong I would talk to your doc before proceeding for the next one. The other thing to watch out for is blood in the urine. Sometimes the drug will inflame the bladder. It is normal to have a little blood in the urine but if it is a lot and doesn’t clear up in a couple of days after the treatment call the dr or clinic to find out what to do before the next treatment. It is OK to skip weeks if needed. I had to skip one because of a yeast infection. That made my reaction to BCG worse. Ways to combat side effects included for me drinking lots and lots of water. I mean lots (5-6 500 ml bottles at least). I also found diluted peppermint tea helpful. I suggest staying off caffeine as it irritates the bladder. The first pee out will feel like hot razor blades. They sure didn’t tell me this at the clinic the first time I went and I freaked out. Being a woman I discovered pouring cool not cold water over my area as I peed aleviated the pain quite a bit. I also washed myself carefully after each void to lessen skin irritation. I would apply Lanacaine cream to the area to help heal the skin. Keeping your urine very diluted helps reduce the “hot” feeling and reduces the likelihood of genital skin inflammation. I kept a log of my side effects so I could remember and report it if needed. I found with the brain fog I had trouble focussing and remembering. All side effects wore off 4-6 weeks after finishing treatments. I am currently almost 5 years cancer free for the origianl cancer sites and 2 1/2 yrs free for the reoccurence site. even though it was very difficult I’m glad I did it and still have my bladder. I am the veteran of 21 treatments. Doctors really vary on their protocol for BCG so it is difficult to compare experiences. IF you have any questions feel free to private email me. I hope my answer helps.