I've had 2 rounds of 6 BCG treatments (one with interferon) then 6 rounds of mitomycin as BCG was not available. Now I'm having 3 rounds BCG at 1/3 dose (due to ongoing shortages), and for the first time, I've had some bleeding with clots, cramps, nausea, headache and temperature up to 100.4. I've known these things can be expected, but it really surprised me based on prior experience with very little side effects. They are saying that it's because my immune system is really kicking in this time.... Last in the series is coming Monday, then I'll be "free" for 6 months before next cysto...Hurray! Good luck to you.
BGC Treatments are a live TB virus. PLEASE DO NOT pee it out in the bushes! Did they not give you the information about how to go in the toilet and pour Clorox in the toilet and let it sit for 15 minutes before flushing? You need to follow that regime for the next 6 hours.
4 years 11 months ago - 4 years 11 months ago#48745by carpboy
OK, dose # is in the books.
My first (and only conscious) cystoscopy was a frightening, painful experience. I, as 55 y.o. male, had never had anything like this done to me before.
The uro, as he pulls the instrument out of its container said "don't look at this".
The nurse started with a syringe of lidocaine. The problem is she injected it as fast as she could, like if it were full of water and she was trying to shoot it across the room. I almost jumped off the table it hurt so much.
After a couple of minutes the uro comes in and here comes the garden hose. Even with the lidocaine that was very very uncomfortable with a bit of pain.
As part of the exam they then fill the bladder with water. Apparently the nurse wasn't paying attention and the uro said something to her, so she grabs the saline bag and squeezes it real fast. My bladder puffed up full in a fraction of a second and I again almost jumped off the table. Good lord that was horrific.
I later complained to the uro about the nurse's skills.
After the exam and for the rest of the day I had sever urinary irritation and I couldn't retain even the smallest amount of urine for ore than several minutes.
So back to today. The above highlights all the fears I had going into the BCG treatment.
Today's treatment was nothing, literally no issues whatsoever.
I asked the nurse to be slow and gentle, and using a 12 ga. catheter it was a breeze, mostly. I small, brief moment of discomfort as the catheter passed the prostate, but nothing more.
The introduction of the BCG (50 mg of Merck) was totally unnoticed. Retention was a no brainer. Absolutely zero discomfort.
I held it for 2.5 hours, could have gone much more if I had wanted to. I pee in the bushes, the benefits of maleness.
I am now writing this 6 hours after and still have no side effects at all.
We'll see about tomorrow but I am really hoping that this is a good harbinger.
Welcome to the club that nobody wants to be in. I am so sorry you've had to join. Everyone seems to handle BCG treatments differently. I for one do not handle it well.
They should tell you to stop drinking 4-6 hours before your treatment that way your bladder is completely empty. Holding it for 2 hours has never been a problem for me. They really don't put that much in you. It's once you release it that it gets dicey. About 30-45 minutes before it's time to release it start drinking plenty of water and keep drinking water for the next 6 hours. The more you can flush your bladder, the better.
There's a whole cleansing régime of pouring Clorox in the toilet and letting it sit for 15 minutes each time you use the bathroom for the next 6 hours and showering each time to make sure you don't have any BCG treatment on you.
I wouldn't recommend overdoing the Uribel and Pyridium or mixing it with Oxcy. It may have a reverse reaction and make you so relaxed you can't hold it.
I have found that starting the Uribel one day before my treatment and taking it every 4 hours helps. Drinking water helps too.
You are one of the lucky ones if they were able to secure BCG treatment for you. I'm being told I have to put off my treatments because my doctor can't get any. And as much as I HATE my treatments, I don't want this coming back again. This is my second bout of bladder cancer.
This is a great support group and you will get plenty of information and support here.
4 years 11 months ago - 4 years 11 months ago#48732by carpboy
Cancer newbie, yippee, what fun.
Have bladder CIS, non-invasive. My symptoms were pain during urination. That lead to some biopsies that found 3 locations of CIS.
After the cystoscopy I had SEVERE urinary irritation. I had an INTENSE urge to urinate like every minute, even though there was (of course) zero volume to pass.
I am extremely concerned about my upcoming BCG (found some at U Penn, all the local uro's around me are tapped), not only becuase of the nasty side effects (I have to work - am I going to be wiped out?) but also because I am terrified of not being able to retain the BCG solution for even a few minutes.
Even at almost 4 weeks since my last procedure I have pain and burning during urination. I take Uribel to help, not so much that the pain is intolerable but because I am afraid of sudden incontinence.
Can anyone give any pointers? I am going to start taking vesicare several days prior, then day of add in pyridium and throw some oxy on top of that.
This has me shaking in my boots, I DID NOT tolerate the cystoscopy well at all. All I can hang my hat on is that the catheter will be of a much lighter gauge than the garden hose I had used on me and also the the nurse will have a gentler touch than the last one.