BCG Treatments for bladder cancer, let’s discuss em

[Jebus35745]

The second TURBT confirmed the tumor isn’t in the bladder muscle, just the lining. WHEW!! So now looking at 6 BCG treatments, one a week for 6 weeks. Searching BCG is just getting general symptoms after each one and how people felt going through them. Looking for actual experience with people that went thru the 6 BCG’s and opinions or how it went for them.

Not done with the prostate cancer diagnosis yet, have a PET scan and a second opinion from an outside lab. Treatment on this will follow hopefully this month.

So you go home with the fluid in your bladder after they pull the catheter out. You try to retain it for 1.5 to 2 hours at home , is that hard to do? After both TURBT’s he filled the bladder with Chemo, he plugged the catheter so it was retained in the bladder for 1.5 hours.

How long does it take to fill your bladder? Are you in a twilight?

What after effects did you experience after each treatment and how long did they last? Do they make you tired?

Did the BCG cure you and for how long?

Thanks, Larry

 

[soFlaNative]

BCG, TURBT, CBG, PET, GBT.
I know what none of this means excepting WHEW.
Figured the least I could do was bump this somehow in hopes you receive answers.

 

[rustythread]

The second TURBT confirmed the tumor isn’t in the bladder muscle, just the lining. WHEW!! So now looking at 6 BCG treatments, one a week for 6 weeks. Searching CBT is just getting general symptoms after each one and how people felt going through them. Looking for actual experience with people that went thru the 6 CBG’s and opinions or how it went for them.

Not done with the prostate cancer diagnosis yet, have a PET scan and a second opinion from an outside lab. Treatment on this will follow hopefully this month.

So you go home with the fluid in your bladder after they pull the catheter out. You try to retain it for 1.5 to 2 hours at home , is that hard to do? After both TURBT’s he filled the bladder with Chemo, he plugged the catheter so it was retained in the bladder for 1.5 hours.

How long does it take to fill your bladder? Are you in a twilight?

What after effects did you experience after each treatment and how long did they last? Do they make you tired?

Did the GBT cure you and for how long?

Thanks, Larry

Just finished 6-week course--BCG Mondays and some other chemical on Wednesdays. BCG retention for 2 hours or more not problematic at all. You may want to have someone drive you.
YMMV Best of luck to you

 

[16thVACav]

According to the Cleveland Clinic, BCG (Bacillus Calmette- Guerin treatment) is the main immunotherapy used for treating early-stage bladder cancer.

 

[wundudnee]

I had bladder cancer when I was 64. I went through the cystopystys and removal of the cancer spots. I then did the six week BCG treatments. They had me lay down for an hour, moving a quarter turn every fifteen minutes. It was fairly uncomfortable for the next few hours. It burned to urinate and I passed a little blood. I developed a hate for Mondays. After the six weeks of treatments I had to do Cystos every three months for awhile then every six months, then every year. It was successful and everything still works as it should. I just had my 86th birthday, so it's been 22years.

Going through all that makes you lose all your bashful feelings.

I wish you well.

 

[Kinman]

Heres what I know about catheters. I was on one for a couple weeks following a radical prostatectomy. The day they wanted to pull my catheter was during the week I was going to be up in Canada for a month. They told me "No problem, you can pull it yourself." They told me to get comfortable on the edge of the bed and to get a firm grip on the catheter where it disappears into my body, then in one fluid motion with gentle pressure pull the plastic tubing out of your unit until the bulb comes free. The one thing they stressed was whatever you do "Do not stop until you get it out." I pulled it off without a hitch but will mention that by the time I had the bulb out I was no longer sitting comfortably on the edge of the bed but standing and panting pretty danged hard.

 

[seasoldier85]

I thought this was going to be about bolt carrier groups... Yikes, I learned more than I cared to. I hope your treatment goes well and prayers for a speedy recovery.

 

[bdGreen]

I hope you have a creditable physician/hospital to administer the medication. My cousin went through the 6 weeks of the bladder filling procedure, and it wasn't successful.
He lives north of MPLS. and we encouraged him to go to the Mayo Clinic in Rochester.
He did.
Went through the complete 6-week ordeal, again.
Fill the bladder, lay on your back, left side, stomach, and right side for about fifteen minutes in each position.
It was successful this go around.
Just the thought of having the catheters and all that was required for the six events but also the probing and monitoring on top of all that.
You will have to do your due diligence after you get home to isolate anyone from using your bathroom facilities until after they have been thoroughly cleaned and sanitized. It's a must with the tuberculin culture that is live.

He won the battle.
The Mayo clinic is the best. I was up in MN visiting and I took him down to the Mayo for one of his treatments. It was an experience. Huge complex and very professional all the way.
Try and go with the best. You won't regret it.

bdGreen

 

[Jebus35745]

Thanks for all the well wishes/good luck. This place is the greatest. It’s nice to touch base with some real life experience. I’m so happy I didn’t have the stage 2 where I loose the bladder, what I have is “VERY” curable. Waiting on the prostate cancer info to be accessed.

I did read somewhere that that the diameter of the catheter used is smaller to make it somewhat more comfortable. I swear the last one they used a garden hose. LOL

If anyone reading this has blood in your urine and it clears up, go see a doctor. The problem didn’t go away, it could be an early warning for something. This way if it’s cancer, it may be early detection and very curable.

If anyone else can add more information, please do. I am using the Cleveland Clinic Urology dept for my procedures. The clinic is one of the better hospitals in the country. I had a quadruple bypass done at Hillcrest hospital, their reputation is worldwide for heart surgery. Larry

 

[S-W4EVER]

I thought this was going to be about bolt carrier groups...

My first thought too... phosphate?

 

[THREEDFLYER]

Larry,

Thanks for the call today, I have not been on the forum for several weeks with getting settled into the new/old place in Wisconsin.

I am sorry to hear of these medical issues and hoping the treatments go well for you.
Keep us posted on how the PET scan goes.

Your friend,
Tom

 

[ISCS Yoda]

Well, my first run at bladder cancer was in 1998. We scraped it out, I think once only, it is hard to recall now considering what I am about to tell you, and there was no BCG. I had cystoscopies every three months for two years, then every six months for two years, then annually. Somewhere around the fifteenth year, my urologist told me they could now detect bladder cancer cells through markers in a urinalysis so that ended the cystoscopies. I do seem to recollect a chemo treatment right after the resection procedure but I could be wrong because of what happened later.

Summer of 2022, hot August day, I came inside after a 2-mile walk, time to hydrate and time to lose the hydration from before the walk. WHOA!!!!!!!!!!!! BRIGHT RED URINE! I know exactly what that means. Long story made short..........

Another resection..........and my doctor is retiring from the practice to become the head of urological research at his hospital so he referred me to the head of urology at UT Southwestern. Another cystoscopy leads to another resection procedure and maybe another - I lost track literally. But I definitely recollect an upload of chemotherapy after these procedures, lie on my back, roll side to side, etc. Anyway, after the last resection, the doctor tells me about the BCG procedure. Okay, fine, let's do it.

Here's where I probably differ from a lot of men. After decades of cystoscopies, mostly with female nurses, I'm immune to shame. Getting out of my clothes and popping up onto the gurney is second nature to me. I don't care at all so for a BCG treatment I undress and so forth right there, throw my clothes on a bench, let's get to it! They inject the lidocaine, not fun but no big deal, and then the catheter, then the BCG upload, done and done, I dress and go to lunch or maybe straight home to hang out, whatever. Yes, I wait an hour or two before using the toilet but nobody asks me to roll around or anything else.

BUT!

You're talking about six treatments for six weeks. That's not the end. I've been doing BCGs every three months, a week after each cystoscopy, since the last resection procedure in 2023. That's probably close to 30 BCG treatments, maybe 40. I show up, I get it done, and I leave. I don't dread it, they don't bother me, it needs to be done so I do it. July is the end of a two-year cycle, the last quarterly cysto, and the last 3-week BCG treatment. We will switch to six months for a couple of years (assuming I live that long, but that is the plan ) and then as I become an octogenarian we will get to annual cystoscopies and, maybe eventually, just urinalyses.

Was I cured? Maybe so. Time will tell. It took more than 20 years for the bladder cancer to return without BCG treatments. If it comes back in 20 years I won't complain.

 

[ISCS Yoda]

Okay, that's a long post so I'll add more here. First:

wundunee wrote: Going through all that makes you lose all your bashful feelings.

MY POINT EXACTLY. Get over it. It's simply not important who touches your package! Or sees it. Seriously. These doctors and nurses have seen it all; they don't care.

But I have to add one more factor - right after my last procedure they asked if I would participate in a double-blind study of a medication called "rapamycin". It's just another fungus from the Easter Island archipelago - Rapa island. Some think it's good for Alzheimer's disease. Some others see a potential for curing bladder cancer. Does it work? I don't know. Did I get the rapamycin or a placebo? They don't tell anyone but I can tell you I got the rapamycin because I was a pharmacist before I was a lawyer and I know how to think through medications and side effects and I had all of the side effects. Minor, but obvious. So if your clinic has that study going on volunteer for it. Odds are 50-50 you get the real thing. if not, no harm, no foul. If it's real, and maybe works, well, why not?

But to reiterate, don't dread the procedures or treatments. It's simply no big deal.

I must add, however, that for a cystoscopy or a BCG there is a technique to make it less uncomfortable, I do three things:

1A. I turn my toes towards my nose; this stretches your hamstrings, hurts a little, and is distracting.

1B. For a cysto add dropping your hips; this lowers your "girdle" and the camera passes over more easily.

2. Bite on something. I use a half rolled handkerchief. Again, distracting.

3. Bring anything, hand grips, rubber toys/balls, to squeeze. Squeeze hard. Very distracting.

If you do these enough times you'll get through them like it never happened.

And I WATCH the screen during cystoscopies. It's like an underwater movie.