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Just had first TURBT

2 years 7 months ago #51028 by LillianG
Dave, sorry you are here, but welcome to our world. I was reading your thread, and decided to share my two cents about BCG and BCG Maintenance. I had my 6 Induction treatments back in Sep-Oct 2015, and I just finished up my first set of 3 Maintenance treatments this past week, so the 'experience' is still very fresh in my mind.

For me, I didn't have anything more than slight discomfort (chills, low-grade fever, and urgency) for the first 3 induction treatments. Side effects for treatments 4 and 5 were fairly intense (bladder spasms, excreted tissue/blood fatigue), and then treatment 6 was no big deal.

Three months after the 6 induction treatments, I had my first cystoscope and cytology work (all was clear). My doctor decided to wait three more months and until after my second all clear cystoscope & cytology to start my 3 Maintenance treatments. The 3 Maintenance treatments were at full dosage, and the side effects were a bit more intense than my #4 & 5 induction treatments, but very doable. My treatments are usually at 11 AM, and aside from fatigue, all of the other side effects from the treatments were gone within about 12 hours. From what I've read over the past 11 months on this forum and the Inspire forum, it seems like each person handles BCG treatments differently, some seem to tolerate it better than others.

Wishing you the best,
LilyG

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.

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2 years 7 months ago - 2 years 7 months ago #51027 by Alan
Dave,

The good news is Sara Anne and I are both bladder cancer free for almost the same period of time.... 8 years. My URO who studied under Dr. Lamm in San Antonio some 30+ years ago for some reason deviated from the elongated maintenance protocol. As mentioned, he wanted to minimize invasive testing and procedures as much as possible although I had 2 TURBS and 12 BCG installations. After a year of cystos every 3 months he jumped me to one every 6 months for a year then yearly after. It may have to be more with my tumor being small. Between my GP and URO we concocted spacing 6 months between my annual physical and my yearly cysto with cytology for each being a non invasive test.

As for BCG. I have read about VERY few systemic problems. Should I have had an infection or any continued bleeding he would have waited to do the next installation. Every one seems to react slightly different in side effects with most being cumulative. For me the first 4 or so were a breeze, 5 and 6 caused fatigue and some minor bleeding. The next group of 6 added more mild pain, burning when voiding and more fatigue. The fatigue might have been more to do with less sleep getting up 12-15 times at night. Drink lots of water! The biggest problem was the 24-36 hours after an installation. I learned to know where the nearest restroom was because I had maybe 20-30 seconds otherwise I would have no control. 2 days after it was better having maybe 5 minutes to know where to go-it got to be humorous! For these reasons I tried to have mine done later in the day so I would have maybe one bad day. After the total of 12 I think I was pretty much back to normal a few weeks later. I always remind myself and others that this is a lot better than chemo! If this is the worst of it, give it to me!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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2 years 7 months ago #51026 by sara.anne
Yes, Dave. As the BCG treatments continue, the side effects become more pronounced. The immune system becomes progressively more sensitive. At first I thought "this is nothing." Ha Ha. The side effects that I had were primarily fatigue, bleeding, burning, and urgency. For me the worst were the day of the treatment...no way could I have worked those afternoons (my treatments were usually late morning) but I could have the next day. Of course, everyone is different.

Following this Forum for 8 years, I have "watched" lots of others go through BCG and I believe I only heard of one with systemic issues. That, of course, is a medical emergency and BCG treatments stop immediately.

Lots of personal info here on the Forum under the "Non-Invasive" heading. In fact we have set aside several threads on BCG at the top of this category since they received so much attention.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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2 years 7 months ago #51023 by Houston Dave
Thanks for contributing to this topic.

How hard is it to tolerate the BCG? I notice your URO did the double 6 week protocol, rather than the longer term one (Lamm protocol), where you get BCG every three months for 3 weeks out to either 21 or 24 months. Were you able to work the next day after a BCG tx? I have a desk job primarily. Did they get progressively more painful or have more complications? Ever get a systemic response requiring antibiotics? I really appreciate the input of real patients!

No recurrence in 8 years sounds fantastic!

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2 years 7 months ago #51016 by Alan
Dave, doubly glad you are here-hopefully you can extra insight! My URO did a CT scan along with the cysto to rule out other involvement on my DX -for whatever that is worth. I am 8 years free and I now have my annual physical 6 months apart from my annual cysto adding a cytology for each since it is a non invasive tesr.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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2 years 7 months ago #51011 by sara.anne
Dave....interesting background!! You know enough to be dangerous! I have a Ph.D in pharmacology, taught for 10 years in a med school, and then spent the rest of my career at NIH. When I think of what I had to learn about bladder cancer, and to absorb....well, it boggers the mind.

I found it interesting when I delved into it, that there is really no scientific reason for the BCG dosages used. My urologist explained that this was the dose that was packaged by the manufacturer for other purposes when it first started to be used in bladder cancer. Which is why he wasn't wedded to keeping the original dose when side effects started to be problems. As you know, it does have a fascinating history!

About urine cytology....again, as you no doubt know, it does have its uses but is fraught with false results, especially false positives. My uro does it, with caution, at each cystoscopy.

The Forum could really use someone with your expertise!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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