2017 BCG Post-Mortem - June 21, 2017

I completed a series of 3 BCG Maintenance treatments in early May, and I have dawdled a bit on posting the results.  This behavior, as well as my very infrequent posting on the blog, are symptomatic of a very good thing.  Cancer is no longer a major factor in my day to day life. It's a nuisance, a pain, and a distraction. Somewhat like having to go in to the dentist for a root canal every once and a while. Nobody likes it, but it has to be done, and then you are back living life again, having mostly forgotten about it after a day or two. So how was it this time? Fricking awful, as usual, but temporary.  

If I could go back and do all the BCGs again (not that I want to), I would do a lot of things differently.  I started out with the philosophy that hydration was the only remedy, and the worse it was, the more hydration was needed.  Was drinking almost a gallon per hour and making things worse by flushing out electrolytes and getting extra side effects from that.  I also suspended almost everything a few days before treatments - all supplements, vitamins, alcohol, whatever.  A lot of times I blew off the deep breathing exercises, making the catheter insertions more painful and recovery from it taking longer. Probably a few other things as well.  I also focused my data gathering and reporting on urinary symptoms, which can be spectacular and colorful, but are not really meaningful to the experience.  I was describing what the urine looked like, but very little about how it felt each time, or how I was feeling in general. I even grabbed onto the term "malaise" to describe my general blah feeling, body aches, mental dullness, and physical exhaustion - most of which was caused by over-hydration.  

This time I tried to focus more on the general feel of things, including minor inconveniences for a few days after, which I had formerly dismissed in order to pretend to be mentally tough.  Maybe good for the ego, but not all that helpful for the audience.  I also did not discontinue any supplements or other lifestyle until the day of the treatments, except for the 3rd one - when I took a beta glucans supplement early in the morning before the treatment.  If you were wondering if beta glucans are worth the expense, or whether they do anything, I suggest you compare treatment 2 and 3.  Normally #3 would be worse, and it was much milder in this case. Here are the symptom charts from this series: 



With a 3 year gap since the last time, the first treatment was no big deal.  Just an inconvenience. The second treatment pretty much mirrored 2014, as did my protocol - no supplements, medium hydration including Gatorade, etc.  I have had much worse times with BCG in the past, but after feeling so good for so long, this second treatment was pretty tough on me mentally.  For the third treatment I took a chance and did my normal, empty-stomach, early morning beta glucans supplement. The difference was quite astounding.  Even so, I am not eager to do it again, even though the original protocol suggested by Dr. Lamm would indicate one final series of 3 maintenance treatments in 2020.


Dr. Hopkins has mentioned several times that he is unsure of the benefit of continued BCG maintenance, but he has gone along with the Lamm recommendation from the beginning.  We did skip one series by broadening the timespan from 1 year to 2 years early, and ended up skipping another by broadening the 2 years to 3 years starting last time.  We may end up blowing off the series in 2020. If you ask me now, a month later, I'd say 2020 is not going to happen. Not so much because of the nuisance, nor that I think BCG is not effective.  But more so the other supplements, lifestyle, and diet changes I have made have improved my health to the point that I think what I do now is more powerful than another BCG series would be.  So why spend another 3 days in discomfort, running to squat on the toilet and doing the biohazard thing?  I may feel differently then, if insurance is still paying, and I am in a "cowboy up" mood.  Time will tell.

In the meantime a lot of you have come and asked me something to the effect of: "Exactly WHAT is it that you are doing now?"  I suppose digging through the blog posts to find what I did and then translate in things that I changed my mind on is a big pain. So I plan to make another post later on that summarizes my current protocol and provides the rationale for each.  I need to ponder it for a bit and then get in the mood, so no promises of when, but hopefully later this summer.




2 comments:

sjpw62 said...

Hi there, I am from Calgary, Alberta Canada and I have been declared bladder cancer free for 2 years as of Feb 9th. My last ever BCG treatment was in April-May for 3 weeks 1 per week. In Canada they do not continue treating with BCG after the 24 month period is up. I felt really lost afterward and thought wow, what next. I would feel more comfortable if the BCG treatments were ongoing. I will still go for cystoscopies annually, but the fear is real. Have you ever felt that way? Thanks for listening. :)

Steve Kelley said...

I think BCG is helpful, but not so helpful as losing weight, maintaining alkalinity, adjusting diet, and doing light exercise. And I can boost my immune system (which is probably what BCG does) with beta glucans supplements.

So I no longer feel a desire to continue BCG, and it's quite probable I will decline my last treatment scheduled for 2020.