In my last update I pointed out how it seemedDr. Hopkinshad missed the thrust ofDr. Lamm's response to his email. Differences boiled down to "AS TOLERATED" versus "UNTIL SIDE EFFECTS OCCUR." I also promised to email Dr. Lamm myself, and I expected him to reiterate his earlier guidance. I believe the email exchange and what transpired next may be of interest to most of you.
Please be advised that challenging your doctor is an exercise in delicacy. Doctors are trained to be confident, and their natural egos are given frequent boosts as they complete training and begin practice. It's important to be respectful and keep in mind that YOU have employed the Doctor as an expert in his or her field. It is a sad tribute to American culture that we so often hire experts and pay for their advice, then discard it whenever it does not suit our (often less-educated or experienced) preconceptions. In anearlier postI had suggested that both doctors could benefit from collaboration and so could both patient sets. The reaction I observed raised my awareness that THREE egos were involved in potential conflict - those of the two doctors, and MINE! Since mine is the only one I can influence, I started there. Trying to be objective and respectful, I prayed for guidance as I composed an email to Dr. Lamm. My primary goal was to summarize all relevant facts succinctly to minimize the time it would take for him to read, understand, and respond to the message. When I was finished, I waited a couple of hours and took a fresh look to reorganize and tighten it up. With I final prayer I sent the finished product, reproduced for you below:
e-Consultation Follow-Up QuestionsI copied my email address and added home and cell phone numbers after my name. The message was sent Friday around 1PM, and Dr. Lamm sent me the response below at 3:40PM on Sunday.
Dear Mr. Kelley,I was dismayed to see that Dr. Lamm had to discontinue his e-Consultations, as I found his advice to be very helpful. It was very generous of him to answer my questions. I checked his website and found this short note, "e-Consultation Services are no longer available." Bad news indeed for those who don't have the time or funds to travel to Phoenix to see him. As I read his email, it seemed to boil down to -
1) Evidence supports that reduced dosages are equally effective (and more effective than adding interferon, which I was not contemplating)
2) One-tenth dose for my side effects - a pronouncement that surprised both Kathryn and me.
3) Just mix it up - no big deal
I trimmed Dr. Lamm's email down to just the facts and sent the following summary to Dr. Hopkins on Sunday evening:
Dr. Hopkins,Dr. Hopkins responded to me at 3PM on Monday...
Thank you. We will discuss how you want to proceed (dosage) when I see youThis polite reply left a lot of room to wonder how Dr. Hopkins really felt about my "interference." I modeled a number of scenarios in my mind over the next few days, none of which was helpful. So today after prayer, devotions, and shower, I did thedeep breathing exercisesduring the hour-long trip to the doc's office.
We were shown into the waiting room about 15 minutes late, and the nurse asked for the normal urine sample and gave me the normal instructions. "Did the doctor say anything about the dosage?" I asked. "Oh, are you the one that had the real bad reaction?" she asked in return. "No. He sent me an email saying we would discuss it based on another doctor's information," was my reply. She assured me she would check with Dr. Hopkins before preparing any BCG. About 10 minutes later he came in and sat down. I opened with an apology for being so much trouble, which he dismissed with a wave of the hand. We had about a five minute candid conversation. He felt that the published information supported that reduced dosages of one-half or one-third were equally effective, but had no idea where Dr. Lamm's one-tenth dosage came from.He also admitted there was no compelling reason to go with a full dose beyond "habit" and his patients being able to tolerate it. I reminded him of the increased frequency and duration that Lamm had recommended being a bigger factor for long-term toleration. He told me that he used to follow a two-year maintenance BCG protocol based partly on Lamm's research, and that he had recently switched to three years based on more recent research, also by Lamm. So he felt the increased schedule (out to 12 years) at my age would indeed support a reduce dosage. I suggested a compromise that we finish out the current series at full dosage, and then go to reduced dosages for the next series. He thought for a second and replied, "Tolerability and going through all three is the most important thing. What were your side effects?" I told him him (since I had excluded that part from the email I sent him), and he immediately said, "Let's go with half a dose this time, and based on how you react, we can re-evaluate next week." I liked that plan, so that's how we proceeded today.
In fairness to Dr. Lamm two things should be noted. First, his current therapeutic regimen is to perform BCG maintenance with dosages that stop just short of producing any side effects. He has gone as low as 1/60th dose that I know of. Second, he has access to more current data from his practice and studies than has been published, and Dr. Hopkins would have no way of knowing about it. Since I am not Dr. Lamm's patient, nor have I signed up to be a subject in one of his studies, I think the compromise is a reasonable way to proceed.
Gloria came in a few minutes later with my reduced dose. I asked if she was going to make fun of me, having pointed out last week that "even little girls" could take the full dose. She laughed and denied that she would consider such a thing. Since the instillate is the same volume (50cc) with half the BCG, the instillation process was not any easier. Dr. Hopkins mentioned that he had me in a vulnerable position and asked whether I was supporting Utah or TCU in tonight's football game, pointing to his bright red Utah school tie. I laughed and told him that Kathryn and I both went to Baylor, so we had no love for TCU from our Southwest Conference days.
The side effects started one hour sooner, peaked faster, are somewhat more severe. They seem to be tapering off an hour sooner. Jury is out on how long they may last. I should probably have spent less time on blog updating and paid more attention to hydrating! Signing off for now, and to the left there's a drawing ofBiohazard Mandashing off to his favorite room! As with ANY graphic on the blog, you can click on it for a larger version.
Details of the side effects are posted on this BCG Maintenance #1 BACKUP PAGE.