BCG Maintenance Series 6 - September 9, 16 & 30 2011

Just over three weeks ago I posted the successful results of my Judgment Day cystoscopy and praised the merits of modern technology - a High Definition monitor and a more flexible, smaller diameter probe.  In the three short conversations with Dr. Hopkins since then, I learned more about it.  While it certainly is High Def and more flexible, the doc claims it is exactly the same size (14 gauge French) as the other two he has used on me.  They have three scopes and the staff rotates them around on some basis unknown to him.  While he claimed (jokingly) that it was his excellent handling of the scope that produced zero symptoms afterwards instead of several hours pissing fire and 36 hours total recovery, it was probably a combination of several things:  My expectations that it was smaller, my relaxed state via deep breathing (which is normal), the presence of the High Def monitor to take my focus and concentration away from the area of discomfort, the increased flexibility of the Storz scope probe, and the wider High Def camera that allowed him to inspect the entire bladder lining and ureter openings more quickly with fewer passes.  While I would still like to take a micrometer to the three scopes and see for myself, they are not going to let me do it!  Truth be told, he prefers the oldest (and least flexible) scope with the optical viewer (no camera or monitor).  He says the ones with the monitors are upside down "The top of the screen is not the top of you."  I absolutely prefer the monitors as my all-consuming focus is on the screen rather than what is happening below my waistline!

Moving on to the treatments - as I mentioned in my last post, the non-invasive nature of the new scope enabled me to accelerate the BCG plan, but (as you can deduce from the dates in the post title) I had to skip a week between #2 and #3.  This was preferred to being filled of toxic bio-cooties the day before our 28th wedding anniversary!  And this is the first time I have had a full year off between BCG maintenance treatments.  The big question was whether the intensity would continue to build, as it had in the past.  The answer to this big question boils down to good news and bad news.  Good news - the treatments and recovery were slightly better than the last series.  While the urinary symptoms were nearly identical to the minute (see charts below if not squeamish), the day after was, in general, MUCH better than the last few times.  The bad news is that the day after symptoms of the past were, in part, the result of an error on my part - an error now hopefully corrected for the future!  My pursuit of hydration was (as is my style) so single-mindedly focused that I was exacerbating evening and day after symptoms with the additional misery of electrolyte depletion.  I shall publish a revised hydration/electrolyte plan in my next post.

Speaking of BCG, I have now completed the initial set (of 6) and six additional maintenance sets (of 3).  Checking my calendar, I have (if all goes well) six remaining maintenance sets (of 3).  So that makes me halfway through maintenance and 57% complete with BCG.  Of course the frequency spaces out, so the timeframe is just the opposite.  One set per year for three years, then one every second year for three final sets, making the last BCG around the end of September, 2020.  If all goes well and there is no recurrence, I will be 62 years old for my last set.  Maybe they will invent a pill or something before then!

So now for the BCG Report - Round 1 was scheduled for 10:30 or so, which (as expected) turned out to be 11:15AM.  Note, the special handling period and super hydration period is 8 hours, and the initial recovery is another 3-4 hours.  As it turned out, I did not get into bed for some sleep until after Midnight, so imagine what that would have been if I had accepted the schedule change to 3PM.  The doc was dressed in his casual Friday attire and in a very good mood.  Installation was completely uneventful, as was the trip home. The urinary symptoms, surprisingly, were almost to the minute exactly the same as the first round a year ago.  The post handling and recovery were much worse, and that gave me a "Eureka moment."  From the charts below (don't enlarge them if you are at all squeamish - 3 out of 10 on nausea scale), you can see that I had a one-time, very severe urinary symptom at about hour 9 last year.  At the time I attributed the occurrence to my failure to continue hydrating enough, ramping down to almost zero instead of something more gradual.  I compensated by massively hydrating and spent all night peeing instead of sleeping.  I resolved to learn my lesson and do better this time.  And so I did.  I kept my hydration at 2 quarts the first hour, 1 quart the second hour, and 1 quart per 30 minutes or so thereafter.  (1 quart = 947ml for those outside the USA).  Then I ramped down to 1 quart every 45 minutes after hour 8, and slowly stepping down afterward.  Two surprising things happened.  Despite my accelerated hydration, the SAME symptom appeared at essentially the same time, and I felt MUCH worse that night and the following day.  Very odd for round 1.  The next morning I felt so bad that I asked my wife to run to the corner store and buy me some Gatorade.  One hour after finishing a quart of Gatorade, I felt much better - moving from horrible to just blah.  This lasted for several hours, and I had no appetite at all until 3PM.  The only thing I had eaten the day before was a bowl of veggie lentil soup around Noon.  I deduced that my dedicated hydration had not only failed to improve the urinary symptoms, combined with the frequent urination it had also washed the electrolytes out of my system! I decided to add some Gatorade to my hydration plan the following week for Round 2.  See the detail charts below for Round 1 for this year and last year below.  Click to enlarge (3/10 on the squeamish scale).

Round 1 This Year
Round 1 Last Year

BCG Report for Round 2 - Scheduled for 8:30 (the earliest possible time) and happened at 8:50. Again the installation was routine. The doctor and most of the office staff were decked out in their University colors - Blue for Brigham Young University and Red for the University of Utah.  My doc was wearing his red booster shirt, and was rewarded the next day with a decisive victory in the big Utah football rivalry.  Urinary symptoms were again identical to the previous year, so all was good there.  I rotated in 1 quart of Gatorade every 3rd or 4th quart, but found it to sit in my stomach like a lead brick, so I had to slow it down a bit.  Still, all progressed normally, and you can see from the charts below (unless you are squeamish) that the symptoms were right in line.  Even better, the recovery time the next day was MUCH shorter! Click to enlarge (3.5 out of 10 on squeamish scale).

Round 2 Last Year
Round 2 This Year

Round 3 was more of the same - scheduled for 8:30 and administered at 8:55. I started sipping Gatorade right after lunch and continued throughout the day.  Symptoms were right in line with last year, perhaps a bit less.  If less, I imagine it was as much from the extra week off as from the Gatorade.  In any case the day after was less miserable, thanks mostly to the Gatorade.  I think I should probably add even more, as the near-colorless urine all through the evening and next day is indicative of electrolyte shortage.  More on this in an upcoming post!  See the data below (5 out of 10 on the squeamish scale).

Round 3 Last Year
Round 3 This Year

I presume most of you are more clever than I am, having beer or some other form of electrolyte input during your BCG days.  As always, let me know if you have any questions or concerns.  Comments welcome below.


El Calígrafo said...

very interesting
in my case, optimal hydration is 0.50 liters per hour after removing the bcg
Stop drinking two hours before bed
I have not tried using gatorade
Another important thing is to eat lightly the day of the bcg

wendy said...

Happy Anniversary to you and your wife, Steve. Wishing you a wonderful day and may there be many more. May you remain in good health

Wendy S.A.

Anonymous said...

Hi, I'm so happy to have found your blog, my dad was recently diagnosed with bladder cancer and has just started his BCG treatments, he's having his third one tomorrow, he has a little bit of a sinus cold, from your experience is it ok to have the treatment done, when you have a cold? Any imput would be much appreciated. Thank you and all the best to you !

Steve Kelley said...

No problem with a cold, as long as it is a mild one. #3 of 6 should not be a very tough BCG, so go for it!