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they finally got my bcg
Getting my first BCG today at 2:30. they said it will take ten minutes, the nurse will do it, and they will send me home to try not to pee for 2 hours. Worried about the side effects, but she said some people have none.
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10 Replies
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Thanks for the info. I remember they gave me some sort of numbing gel when they first did the scope, and it was no help. Still quite painful and I was flopping around the table like a wounded animal. I guess it was just the fear of the unknown.
Yesterday (my 2nd BCG) I asked the nurse out front if they could give me something for pain before insertion of the catheter and she said “Oh, you have pain?” It was like she was shocked that I would even mention it. She said to ask the nurse in the room. The doc came in with his nurse and I was hopeful the nurse would do the procedure, but the doc did it again. I asked him about the gel and he said “No, don’t worry, it only takes 30 seconds.”
It wasn’t as bad the 2nd time, but I don’t imagine I will ever get accustomed to this barbaric procedure. No side effects again except for a slightly elevated body temp and some burning pee. But, I am told the side effects might get worse as I receive my subsequent treatments.
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Busaman,
Prior to the next BCG treatment, call the office and ask, “Do I need to request, in advance, numbing gel be used prior to cystoscopy ?”.
While practices differ, placing the gel into the urethra 5 minutes prior to inserting the catheter does make a difference.Some believe that the gel reduces the effectiveness of BCG. But, do ask. I’d prefer a nurse or a tech placing the catheter instead of (most) docs.
The care team’s job is to get you through the treatment with as little pain and anxiety as possible. Let them know how to help you.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
This might just pertain to me but I’ve found that if I cough as the catheter hits my prostate it seems to go right through – the sting as it goes through the prostate seems to be normal and this seems to work well for me.
In my case the BCG treatment side effects seemed to increase until about #21 now for the last 3 they seem to have decreased. I used to have bleeding after holding for 2 hours but that hasn’t happened lately. My routine is to take 2 doses (2 tabs a dose) of AZO the first day and then I’m pretty much over it.
It will be 4 years in Oct. since my diagnosis and I’m now feeling pretty good. Keeping fingers crossed.
Peace and Love,
Dave
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
Sorry to tell you, the BCG side effects increase as the treatments continue!?. But the good news is that this is exactly what you want as it indicates that the BCG is causing the immune system to kick up and reject the cancer cells.
You will do fine!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
My first BCG treatment was not bad, except for the catheter insertion. I think I screamed loud enough for the patients in the waiting room to hear me. The doctor himself did it. I thought he might give me something to numb the pain, but no, he just went right for it. My next treatments will be done by the nurse and I am hoping she will be a little more gentle.
Within a few hours my body temp went from 97.1 (normal) to 99.0 and kept going up and down. The doc told me to go the ER if it went over 101 but it never got near that.
I had none of the symptoms I’ve read about except for some unusual sharp pains in the groin. Does any of this mean I will tolerate the rest of my sessions well? I can only hope, but I just can’t think about that insertion. The doctor kept telling me to relax. Sure, easy for you to say.
” my uro told me no sex for 48 hours and then use a condom for two months! is this correct?”
That is correct. Plus, use bleach for the toilet bowl for several flushes. I have never read about a problem afterwards on contamination however safety and caution is a good idea. As my URO told me “if it was that dangerous he would not let his staff not himself use BCG”. Practice good hygiene and wash your hands!
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.
thank you so much for your guidance. it is so helpful when i don’t know what to expect.
I hate that catheter insertion, and when they take it out it’s no fun either. they gave me nothing to numb the pain. I made it through no peeing for two hours. I only had a slight elevation in my body temp, from 97.1 up to 99 and then it went back down to normal. i’ve had some weird feelings around the bladder, like maybe little spasms or sharp burning pains but tolerable. i can only hope the next five sessions go the same way afterwards, but know i will never get accustomed to the insertion of that catheter.
i am nearly 70, so it’s no big deal but my uro told me no sex for 48 hours and then use a condom for two months! is this correct?
thanks again for your help, you are awesome.
Great News !!!
Thank you. I was not expecting to enjoy this afternoon.
Wonderful news!!
You will not enjoy this afternoon, but the first BCG usually does not have a lot of lasting side effects. You will be fine
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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