For this BCG appointment we arrived at the office on time, but the doc was running late. As we were being shown to a room about half an hour later, Dr. Hopkins stopped me in the hallway and mentioned that he'd received an email from Dr. Lamm. Based on that we were going to proceed at FULL STRENGTH for today's treatment. I was a bit surprised, but pleased that some apparent collaboration had happened. He said he'd like to proceed at full strength for as long as I could "tolerate" it, then cut to a HALF dose. I asked if it had become a test of manhood, and he replied, "This whole deal is a test of your manhood!" and laughed. I pointed out that I could tolerate quite a lot in lieu of radical surgery, and we discussed what the maximum might be. Incontinence and inability to function due to frequency/urgency beyond the instillation day seemed to be the litmus test. This is much worse than I was wanting - yet MUCH better than surgery, or chemo, or radiation. So I resolved to "adjust my threshold of whining" and proceed. The instillation took place without incident - I'm apparently becoming a professional at tube invasions. I asked Dr. Hopkins if he planned to follow both the full dosage and Dr. Lamm's increased frequency - quarterly instead of 6 months. He had forgotten about that part, but thought we should go with the increased frequency, too! So my insistence on collaboration seems to have produced the worst of all worlds - increased frequency, full dosage, and tons of side effects to be expected!
On the way out of the office, Dr. Hopkins stopped me again in the hallway and brought me into his office to get a copy of Dr. Lamm's email. He was eager to point out the part where it stated, "It sounds like you are giving Mr. Kelley excellent care." I agreed and took the copy. It made for interesting reading. Along with providing brief background information, Dr. Hopkins asked the question: "I have typically followed your schedule, but with full dose BCG. I am writing because Mr. Kelley has asked me to ask you if you have any other thoughts."
Dr. Lamm's reply, after the compliment, was, "The data in favor of our 3 week maintenance schedule continues to increase. Richard Sylvester has recently presented data from the EORTC showing that BCG using the 3 week maintenance schedule reduces not only recurrence, but metastasis and cancer mortality as well. Remarkably, it was most effective in the intermediate risk patients, those without CIS."
This is all well and good. The next bit did give me some cause for concern:
"We do reduce the dose to 1/3 for maintenance now, but it is OK to continue full strength until side effects occur."The problem here is one of interpretation. Dr. Hopkins took the statement above to indicate that full strength was OK until it could not be tolerated (i.e. to the point where I would refuse to take another BCG treatment). Clearly Lamm states until "side effects occur." I already had side effects from last time, as evidenced by his writeup, "He is now post 6 week induction BCG, which was tolerated with moderate symptoms." I am, of course, presuming that side effects = symptoms. And I certainly had a great display of symptoms today.* I did pour myself a beer at 7 PM, thanks to inspiration from my man Doug in Michigan. Symptoms this time were not worse than the last, but rather about 75% of the distance between Intitial BCG #5 and Initial BCG #6.*
I plan to email Dr. Lamm myself, with his report on me attached to remind him of his past work, plus a detailed description of the day's symptoms. And I shall ask him directly whether he believes that such symptoms indicate time for a reduced dosage. Given the difference between frequencies (Hopkins semiannually and Lamm quarterly) and dosages (Hopkins 1/2 and Lamm 1/3), what exact dose and frequency he recommends, and what side effects or symptoms are acceptable. I expect him to reiterate what he provided earlier:
"I would recommend reducing the dose to 1/3 and giving up to 3 instillations at 3, 6, 12, 18 and 24 months, then yearly to 6 years, then at 8, 10 and 12 years."Anyone want to take that bet? Since we are just now at 3 months, there's a long road ahead. And I want very much to get it all correct!
*Details are described on this BCG Maintenance #1 BACKUP PAGE. Details from the Initial 6 BCG episodes are HERE.