3rd BCG Maintenance Series #3 of 3 - September 25, 2009

I was a little surprised when the doc's office called Wednesday to confirm my BCG appointment at 9AM instead of 9:15, but a quick check of the notes proved that they were correct. I had high hopes that this one would be both easy and over quickly. I was processed in with urine tested by 9:05 and the BCG dose was diluted and ready by 9:10. The doc had not arrived in the office yet, but we were assured that I would be his first stop. And so it was a few minutes later. The doc was surprised that my symptoms last week were slightly milder than the week before, as most people have progressively more intense side effects. I suggested my immune system was in top form, and Dr. Hopkins suggested that I was just weird. We discussed the schedule upcoming. Next will be an 18 month cystoscopy in 3 months, which is now scheduled for December 3 at 11AM. If all goes well, no BCG until after the next cystoscopy in March. I was delighted to hear it. He did not permit me to schedule March yet, preferring to see the cysto results in December first.

The trip home was uneventful except for a major construction traffic jam, so my wife used back streets to get around it, saving maybe half an hour. Hydration plans executed, the symptoms started just before 3 hours post instillation and escalated rapidly. Much worse than the week before - about 4.5/10 on my subjective misery index. After all the urinary symptoms were concluded (around 7PM), I was beset by the expected flu-like symptoms of exhaustion, stiffness, minor body aches and cramping, and a pretty good headache. Plus, as usual, a total loss of appetite. By 8PM or so I decided to discard my macho-male persona and took 1000mg of acetaminophen. It took the edge off the pain, but perhaps an NSAID like ibuprofen would have been better. Unusually, I slept for the most part from 5PM until 7:20PM, and was back asleep again by 11PM. This morning I am still quite tired, and there is a lot of stiffness. Appetite has returned with a vengeance, though! In a day or two I expect that urination will again be a happy time, and in a couple of weeks I hope to be back to 100%.

I have received some communications from new readers of this blog. One from Mike, who had his very first BCG this week. He instinctively clenched up on the tube during instillation, and had to force himself to relax to allow the process to continue. This is why I use the stress balls, breathing techniques and other distractions. Generally if I instinctively clench, I squeeze the stress balls and focus on pointing my toes, which seems to do the trick. Another more disturbing note came from Robert. I sent a reply, but his email bounced (twice). So try again if you are still reading. His feedback is reprinted below:"I start my 3rd round of 3 bcg treatments in 12/2009. No Superficicial Cancer at present. My sexual activity is diminishing from all these treatments. I don't like these instillations."

I think it would be difficult to find anyone who would disagree with Robert's comments...


As for me, I was skipping breakfast and all fluids before each morning BCG, and then having a normal lunch. Yesterday I had a big lunch of spicy food that was high in protein. Big mistake if the BCG is a difficult one. Would have been much better off with something smaller and easier to digest. Felt like I had a softball in my gut all day, which contributed to a strong feeling of nausea in the evening. I think any time I smell bleach or disinfectant wipes, I will feel nauseous for a while. Perhaps I need a better facility, like the one indicated in the second picture!

You can see the updated misery chart below, and a link to the details at the bottom of this posting.

(click to enlarge)

I made the final update (for this series) to the "pee by pee" details on the Series 3 Backup Page. (4/10 on the grossout scale).

3rd BCG Maintenance Series #2 of 3 - September 18, 2009

The trip to the doctor's office was quick due to one of the construction zones now being half cleared, and we were prepared with a detour around new construction. The instillation details were much faster and better than average, with both the doctor and me relaxed. Was done with the BCG and hobbling to the car by 9:29 AM. Hit the hydration immediately and symptoms appeared right on time 3 hours later. It was not as severe as last week and was about 90 minutes less duration. Today there is no soreness and only minor stiffness. All things considered, it was a good BCG. Though I would prefer to skip it - even if it means going to work instead!

Today's picture is a sculpture in Park Falls, Wisconsin. For some reason it reminds me strongly of Dr. Hopkins!
Below you can also see an updated comparison between Series 2 and Series 3 so far...

(click to enlarge)

I also updated details on the Series 3 Backup Page as progress continues (3/10 on the grossout scale).

3rd BCG Maintenance Series Has Begun - September 11, 2009

First off, compared to things that happened on September 11, 2001, today and yesterday are nothing. But we go to our fates with BCG voluntarily, and it is certainly true to say that Bladder Cancer is not for wimps!

The trip to the doctor's office and the instillation details were uneventful, getting the BCG at 10:00 despite a 9:15 appointment. Did the usual sipping and flipping in the back of the Honda Pilot on the way home. A day later I feel as if I had a game of tackle football yesterday, a bit stiff and sore around the midsection and mid to lower back today. Brain is a bit foggy, but not awful. This time will be the same dosages as last time, but a major difference is 6 months in between instead of 3 months. And so the body and bladder are in much better shape (despite cystoscopies in May and last week). And perhaps my bladder had "forgotten" about BCG and how to handle it. I fabricated a subjective "misery index" to help compare each time, and I hope it might help to explain how things feel. The scale-up duration is measured from the onset of symptoms to the peak, after which it tapers off. Total duration is from the onset of urinary symptoms until urination is clear and relatively free of discomfort (though body aches generally continue for 6-12 more hours).
LAST TIME
Series 2 (1 of 3) Misery scale-up duration 2.25 hours, peak 4/10, total duration 19 hours
Series 2 (2 of 3) Misery scale-up duration 15 Minutes, peak 1.5/10, total duration 11 hours
Series 2 (3 of 3) Misery scale-up duration 1.5 hours, peak 2/10, total duration 11 hours

So yesterday was pretty much in the family, albeit the peak symptoms lasted longer, and it took longer for symptoms to begin - 5 hours instead of 3, making for a very long day and night.
THIS TIME
Series 3 (1 of 3) Misery scale-up duration 1.5 hours, peak 2/10, total duration 14 hours

One fact is crystal clear for me - the reduced dosage of 1/3 is far less miserable than any higher dosage.

You can see the comparison of Series #1 and Series #2 below:

Click to Enlarge

And you can also see a comparison between Series 2 and Series 3 so far...

(click to enlarge)

I am also collecting the (not too gory) details on the Series 3 Backup Page as progress continues (4/10 on the grossout scale).

BCG Again - September 9, 2009

Tomorrow is BCG day. Oh Joy - NOT!!! But really this is the best outcome with bladder cancer. No recurrence (so far) and continued treatments. As David F. in England always says, BCG may be awful, but not nearly so awful as chemo, radiation, or radical surgery. So no cause for whining here. I did have to get mentally prepared. Since it's been six months, I had to refresh myself as to the preparations necessary. So I took a peek at my BCG Prep page. Definitely overkill, but there is security to be found in being ready for any contingency. Had to stock up on rubber gloves and "tightie whites" - both to be viewed as disposable. Other stuff all checked out and ready for now.

It's been a good quarter for my fellow-bc fraternity members. David F. in England, Robert S. in New York, Howard F. from Florida, HK from Toronto all came up clear and are continuing treatments of some sort. And a new reader, Mike, begins his first BCGs next Tuesday. To one and all I say, force fluids and pee freely! Even if it hurts.

Only sad news is that HK will have to discontinue his BCGs. They were always horrible for him, and even reduced dosage was not tolerable. Last time a couple of weeks ago, at 50% dose, he got Epididymitis, and was told it was a side effect of BCG. If you follow the link here, you will see that it is more likely that his condition was caused by poor techniques in surgery or catheterization as it was to be caused by the BCG. He was told they would have to try something else, so we shall see what these Canadian docs come up with.

In the mean time, I shall embrace my discomfort with a good attitude and boldly go forward to the land of BCG, where I shall again become Biohazard Man!

Judgment Day #4 - ALL CLEAR - September 3, 2009

ALL CLEAR - two little words. So brief, so insignificant, and yet so meaningful. Trust me - I shall never tire of hearing that short phrase. This day now marks 15 months of being free from bladder cancer, and we all hope for many more to come. When I cross over 24 months, which should occur in June of 2010, I can begin using the term "remission." But not before then. It is dangerous to believe that this is all behind me. A lifetime of annual inspections such as the one I had today will serve well to remind me of that! In the meantime we shall take the good news as it comes. Our little "club" of bladder cancer folks has had a good few weeks. HK in Toronto had an all clear and just completed 3 very miserable weeks of BCG at 50% dose. Those Canadian doctors sure are conservative, at the expense of the patient's comfort! Then David F. in England went in for a full biopsy under general anesthesia and preliminary results are all clear, we hope the urine stream will be less rosy in the short future! It may be that David is done with treatments for a while - he figures the priority on his case must be low as the response has been a month already in coming. Today I have my all clear, and I look forward to 3 weekly BCG treatments at 1/3 dose starting next Thursday. Keith P. also came thru today with flying colors! On a side note, Robert S. had a mini scare with elevated PSA levels and got to experience a prostate biopsy, but he has lab results already and is also clear from prostate cancer.

The day was over early, if not quickly. The drive down took over an hour rather than the normal 45-50 minutes, due to the presence of road construction on nearly every road we used - a side product of the slow economy. No overtime or night work to speed up operations this year! So the road repairs are now going at a glacial pace. Arrived a few minutes early for a 9:15AM appointment and got to fill out new paperwork due to my insurance being eaten by a larger company necessitating new codes an numbers and whatnot. Gave the normal urine sample an had about a 30 minute wait before Dr. Hopkins came in. We exchanged pleasantries and the inspection was done quickly - less than 60 seconds. The familiar burn going in and out - the scope is flexible, but not so much as the rubber BCG tubes! Dr. Hopkins said, "You're fine - everything looks good!" and was quickly gone. After the usual cleanup, re-dressing, and voiding of the saline used for the inspection we checked at the front to ensure our appointments were still good for the upcoming BCGs, and I was treated to a Levaquin as a prophylactic measure against infection. This drug costs over $21 per pill, and it's good stuff. Effective in the target area and no side effects like the cheaper stuff, I was happy to have it.

So tonight we shall have lamb chops and a nice bottle of wine to celebrate. In the meantime I will do a few more emails and go back to bed. While the physical trauma of the cystoscopy is not so bad, there is always an emotional toll taken by these Judgment Days. As always, I hope you find these musings of mine useful, and I thank all of you for your support. Stay tuned for BCG updates (including blow by blow details for those with morbid tastes) starting next week!