1st BCG Maintenance Series (3 of 3) Final Analysis - November 14, 2008

I'm pleased to report that BCG treatment #3 of 3 for my first maintenance series went much better than expected. Symptoms started later, were MUCH milder, and peaked sooner than the first two in the series. Since my symptoms from #2 (with a 50% BCG dose) were stronger than #1 (at full dose), Dr. Hopkins said we would drop to a 30% dose. He indicated he was reluctant to go any lower than that, and I concurred - barring new published evidence to indicate lower dosages than 1/3 are equally effective. He also recommended taking 800mg of ibuprofen when I got home, and again before bedtime, to counteract the severe cramping I experienced in the right, lower back and abdomen the last two times.

There was a bit of confusion with the staff on how to prepare the reduced dosage. Dr. Lamm had recommended separating the raw BCG (which comes freeze-dried) and then adding 50cc of water. Mask and gloves could be used, but not necessary. Dr. Hopkins was concerned about the dry BCG being an airborne hazard and inhalation risk, so he had them mix the entire dose. Last week they drew out 50% and replaced with water. This week a different technician was working, and she drew out 30% and added water to THAT part and loaded it into a syringe. Dr. Hopkins had some extra work to do. After emplacing the catheter he attached a large syringe (without plunger), and then emptied the smaller 50cc syringe of BCG into that, to let it gravity feed. He explained that he did not want to "push" the solution in, if the catheter was sitting somewhere uncomfortable. I was thankful, but the process was a bit messy and took longer.

Afterward he authorized another cystoscopy, and allowed us to schedule the BCG treatments as well. He had declined to do this last time, so it seems he is becoming more optimistic about the prognosis for success. So now we have scheduled Judgment Day #2 at 11AM on Thursday, January 22, to be followed by three more treatments on the subsequent Thursdays. The early scheduling allowed us to secure earlier appointment times, so any long BCG days will peak before 10PM - which was very inconvenient this time!

Symptoms were pretty mild in the urine output area, and while the cramping was present, it seems the ibuprofen and/or lower BCG dose took the edge off. Duration of all symptoms was similar to last week, but the reduced severity was a VERY welcome surprise. Taking it easy today, and fuzzy brain has not kicked in as of yet. Could still happen one or more times in the next 10 days or so. Details of the side effects may be found at the BCG Maintenance #1 BACKUP PAGE.

Bottom line on this first BCG maintenance series? I feel like I have peed an ocean full. I learned something, Dr. Hopkins (and staff) are learning something, and yesterday was not miserable - albeit not a walk in the park. God is indeed good, ALL of the time!


A Dived Ref said...

A Happy Birthday to Bio Hazard Woman :-)

Have a good one.

Steve Kelley said...

Thanks mate!

I got her six monthly sessions of therapeutic massages, and she's used the first already. Guess it was a good gift!

Anonymous said...

Just checking in; good news with the sound of things. Did you say you get a long break after this round?

Steve Kelley said...

Not as long a break as I'd like. I have the rest of November, all of December, and half of January. Then another inspection and 3 rounds of treatment right in the middle of ski season!

Kathryn said...

Thanks, A Dived Ref, for the birthday wishes. It was a great birthday.

Andrew said...

Dude I am on my 4th series of treatments and all I can say is it suck. My first 2 and a half series went fine. Then they had a nurse in training run my catheter and she screwed me all up. After I got home and started the whole at home ritual ,I ended up having to go to the emergency room twice from the pain. As I said I am now on my first dosing of my 4th series, and I am typing to you as I sit on the toilet because I constantly feel like I have to go. I still have a killer pain in my lower back (kidney area) and am seriously about to the point of saying fuck it I am done.

My question for you is did the lowering of the BCG dosage really make a difference? I am in so much constant pain that even taking oxycodone barley helps.

Steve Kelley said...

Yes, it made a HUGE difference. See the chart HERE, and read the posts on my second BCG Maintenance series.