Round 3 BCG - Post-Mortem - July 18-21, 2008

Treatment #3 progressed from "no big deal" to "some kind of deal" this week. All day Friday there was no comfortable position - sitting, lying, standing, walking, hunched over - all equally uncomfortable. Not pain, but burning in the bladder and major discomfort. No way even to take a nap. Reading, watching TV, or doing internet/work stuff was limited to 10 minute intervals - not at all efficient. I ended up shifting positions and/or peeing every 15 minutes throughout the day. The greater the urge, the greater the burning. Urinating brought relief to that, but traded it for a pretty severe bladder cramp lasting up to 20 minutes after. I was able to sleep that night, though, and it was back to discomfort on Saturday and vague discomfort on Sunday. Back at work today and tomorrow before Round #4 on Wednesday. Dr. Hopkins called me Friday and opined that blood clots were not what he'd classify as a normal response, but within the range of things to be expected. A lot of folks are concerned and asked me yesterday and today how it went. I tried to describe it, but it seems to be more upsetting than reporting all is well, which is what we are all hoping for. And since all is well enough now, I tried that as a response - rough for a day or two, but fine now! Even that made some wince in sympathy. If this week is worse, we'll move from discomfort to pain, and I have Lortabs (codeine plus acetominophen) left over from surgery to get me through Thursday. Putting the best spin on it that I can, let's just say I had a fair number of David Beckham moments (see photo) on last Friday, putting me in the best of company. Truth be told, there are plenty of other kinds of Beckham moments I'd rather be having!


Deb said...

Hi Steve,

I've been following your "saga" and it sounds OH SO familiar. My husband has been going through the same things - in fact - some of this could have been written by him. He is now on MAINTENANCE BCG treatment #3 and I have to say - these three have been worse than any of the previous six. Luckily, he'll have 3 months off to recover before the next 3 week round of treatments. Scope to happen on August 7th so see progress.

Hang in there - it's not easy - but it's worth it!!! Your life is worth it and your BLADDER is worth it!!!

Debbie M.

Steve Kelley said...

Hi Debbie,

Thanks for the encouraging words. I hope your husband continues in his cancer-free state. Maybe he can read my story and get some amusement? I see that both he and the British guy both experienced heavier side effects during the first 3-week maintenance session than the initial 6 weeks. One thing you might want to (carefully) run by your doctor - a leading doc in this field, Dr. Lamm, recommends the following for his patients:

The BCG Schedule generally used is my 3 week maintenance program that was found in the Southwest Oncology Group study to markedly reduce not only tumor recurrence but also disease progression when compared to 6 week induction BCG alone. I have modified the regimen as follows: Full strength BCG is used for the initial 6 instillations, often with the addition of skin vaccination as used in my original studies. The dose is reduced if needed to avoid side effects. Maintenance BCG (once a week for 3 weeks) is begun at 3 months using 1/3 dose BCG, unless no side effects were noted during induction. 3 week maintenance is repeated at 6, 12, 18 and 24 months, and then at years 3, 4, 5 and 6 followed by every other year for years 8, 10 and 12. The extended maintenance beyond 3 years is used only for patients who are at increased risk for progression due to high grade tumor, CIS, or lamina propria invasion.

You can find more details HERE.