BCG Treatment #5 - July 31, 2008

The nurse was new to us and ready to roll right away. She informed me that last week's sample was clear of active infection, which is good news. The Doc was in a cheerful mood after his vacation. He had taken the family white water rafting down the Grand Canyon - a full camping/rafting experience. He recommended it highly - if you can handle the camping. He said he kept his promise and didn't think about me once. That's a good vacation in my book! He also mentioned that the infection was gone, which is not mandatory, but he prefers things that way. There were both red and white blood cells in the sample, consistent with expectations. Instillation went smoothly, and I told him how well PA Liz had performed and that I wanted her to be my backup. He was glad she had done well, and told me they rotate the PAs between the office and surgery week by week, so it wasn't realistic to have one designated. But I could ask for her specifically during scheduling. I suggested maybe I should schedule the post-cytoscopy BCG now, and he didn't comment. Instillation (described on the Instillation Page - 2/10 on the gross-out scale) went without too much incident.

On the way out, the scheduler asked if we needed a reminder for next week - my last of this session! I asked about scheduling BCG post-cytoscopy, and she didn't want to do it. They want to know the results of the scoping before future scheduling. Oh, well. So much for my attempt at forward-looking optimism! Returned home and did the hydration thing. Keep in mind that I don't drink any fluids after going to bed, so it's been around 12 hours and the system needs a good kick-start. So I have increased from my original schedule. I now do 16 ounces the first hour, 16 ounces the next half hour, and then 32 ounces the next half hour. This has made getting the BCG out after 2 hours much easier, and hasn't created any "holding problems." Then I continue with 32 ounces or more per hour for the next six hours, then cut to half of that for the balance of the evening. This schedule keeps me going most of the night at least hourly, but the volume has purged the BCG, blood, and clots very well. Keep in mind that the instructions say no fluids for 4 hours before, so I could get up early and have something to drink before 6 or 6:30AM. I don't bother with it, and I think it makes the Doc's job easier (bladder is good and empty) and the BCG solution doesn't get diluted much during the 2 hour holding period.

This week the side effects were more than even Week 3, so the BCG is certainly doing something. And this week there is a new, minor side effect! We can now add some small, solid "bits" to the blood and clots. The "bits" are about half the size of small grain rice, or smaller. Some are rust colored, some white, and some translucent - nothing too gross. The period of side effects lasted a lot longer than Week 3 or Week 4, but no extra discomfort. Details can be found in a table at the bottom of the Instillation Page. I was very sore the week after BCG #3, but that may have been due to the ancillary infection. We'll see how it goes tonight, tomorrow, and the next few days...

8 comments:

Anonymous said...

Sounds good so far Steve!!!


Your rooting team!!!
J

Steve Kelley said...

Thanks Jim-Bob!

Another friend told me to GO FOR GREATNESS, which gives new meaning to continuous voiding...

lee said...

just checking in, sounds like thinks are moving in a good direction. thinking the best for ya!

lee said...

yikes, no spell checker! "things"

Dr. Geoffrey W. Rutledge MD, PhD said...

Hi, I think your blog is terrific, and I would like to feature you on
wellsphere .
Would you drop me an email at Dr.Rutledge(at)wellsphere.com?
Good health!
Geoff
--
Geoffrey W. Rutledge, MD, PhD
Dr.Geoff's MedBlog

Robyn said...

Hi Steve,

This is a great blog. You are a talented writer.

I too have bladder cancer. I have had 2 surgeries and six BCG treatments. The cancer has come back and I am scheduled for surgery again 8/19 and then 6 more treatments.

It's been a rough road but if you can deal with it with humor and love, it always makes it better.

We ride motorcycles a lot also. It's wonderful, isn't it?

I will be praying for you.

If you would like to email me, I am at robyn.malone@noaa.gov

Have a wonderful day and keep up the wonderful work !!! It is a blessing.

Mark said...

Hi Steve

I felt like I entered the twilight zone when I read your blog. I'm a non-smoking white male diagnosed with high grade non-invasive bladder cancer at age 51 (quite certain I had it at 50, didn't recognize the symptoms - dang!!). Too young (statistically speaking), too healthy (I stay fit, right weight), and no historical health issues (no surgeries, etc). I also had doctors asking about health history and being surprised that I had no issues.

I too had TUR (resection cutting out the tumor), followed by a "restaging" (go in again, and take a biopsy to make sure the stage was assessed correctly) and I'm on BCG round 1, instillation 3. No side effects, really, at all.....so far. I read your full site with great interest as it provides the most insight into the diagnostic and BCG process that I've found anywhere. Add to that a little sarcasm and a healthy sprinkling of humor and it should be the "top 10" must read list for any bladder cancer patient. I also appreciate you're positive outlook (I know this is hard some days....).
I found it particularly interesting that you and other bloggers aren't required to do 1/4 rotations lying down every 15 minutes to get "proper coverage" of the bladder. I'm in Canada, maybe the practice is a little different. This was also the required process post-TUR with Mitomicen instillation.
I did find one fairly extensive study that linked bladder cancer to lack of hydration (double the rate of occurance in males drinking less that 8-12 glasses of water per day. I work outdoors in the summer and can lose 10 pounds in a day without hydration. It's the only thing that made any sense as a contributing factor. Regardless, it's treatment time now, and your blog is fabulous and very insightful for someone like me. THANKS A BUNCH for your posting!!!
Mark

Steve Kelley said...

Hi Mark, and welcome to the "club." There are many docs that recommend flipping every 15 minutes for the 2 hours after BCG instill. Mine does not, but I pretty much do it anyway.