Here's my diary after the first two treatments: Monday night Cancer Club: BCG treatments for bladder cancer. I won't repeat the description of the treatment and the scientific background in that diary here.
I mentioned possible side effects (whatever that means) but had not had any yet. The next treatment changed that. Read on below and I'll tell you what happened.
After the third treatment I was uncomfortable after my first urination to get rid of the stuff they put in. I had to wait the usual two hours. I had some burning and some bladder spasms. I'd had spasms before after surgery and these were much more mild.
Things got a little worse as the evening went on. I had to wait six hours after the first urination to discontinue the procedure designed to keep the BCG from contaminating anything. Nothing really special, just treating the water in the commode with bleach and making sure I was sitting when urinating to avoid contamination outside. I also had to wash myself each time. By the time the six hours had passed, there was noticeable blood in the urine.
I also did feel like I was washed out that night. Flu like symptoms can happen and I was nowhere near that bad.
I was following instructions and drinking lots of water, but since I had had little water the 24 hours before the treatment (To help me hold the BCG in for two hours) I was mildly dehydrated.
Urine began flowing in quantity that night so I was getting up quite frequently. The bleeding ended during the night and I slept in the next morning. I thought I was out of the woods.
The following night I bled enough to scare me. I contacted my urologist's office and was reassured and told to drink as much water as I could stand. That night was a repeat of the previous night and by morning there was no more blood.
Each day that week was a lot better and I went back for treatment number four feeling very positive. As I awaited treatment in the office the examination of my urine sample I routinely must supply before treatment yielded "suspicious" results and the treatment was cancelled. I was put on an antibiotic for a week and we continued treatment the following week.
The next three treatments all involved some burning, some bleeding and the run down feeling. The bleeding was far less.
So now I am through it. I get scoped on October 20 and we will be hoping I am tumor free. Even if I am there may be follow up BCG treatments but fewer in number.
So from having done it how do I feel about the choice I made? I am still very glad I did it and will be even more glad if it helped me avoid another round of surgery. Surgery every three or four months is not fun even if it is just done using the scope. Going under anesthesia is not fun for me and with my heart rhythm not being as stable as we would like it is an even larger risk than usual.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.