Carcinoma In Situ diagnosis

2 months 3 weeks ago #60223 by Clyde
Replied by Clyde on topic Carcinoma In Situ diagnosis
Hi Mike,

I think the key to minimizing BCG for me is drinking a ton of water right after the two hours is up, It helps get rid of the burning and cleans all the residual BCG out of the bladder. The only adverse effects I had besides the burning through my 6 installments is a minor sore throat and some achy joints a few days after, but I'm not even sure that was from BCG or just life. If the BCG is effective it will be well worth the downsides to it.

I enjoy reading all the posts to see how everyone is doing and maybe pick up some tips along the way. We're fortunate to have Sara Anne, Joe and others that provide allot of inspiration and expertise to us along our journeys. I'm following your thread as well and wish you good luck!

Clyde

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2 months 3 weeks ago #60220 by Regor
Replied by Regor on topic Carcinoma In Situ diagnosis
My provider is in the process of removing the whole Roll from the documented BCG process. The empty bladder is the size of a Walnut before BCG is introduced. It is coated no matter what position we lay :)

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete

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2 months 3 weeks ago - 2 months 3 weeks ago #60219 by mikequestions
Replied by mikequestions on topic Carcinoma In Situ diagnosis

Clyde wrote: Finished BCG installation # 6 today. No side effects except for some burning for a few hours. Now I have to wait until February for a scope and cytology test to see if the treatments were effective. I'm hoping and praying that they work.
I did ask the nurse why I would pass blood after the first installation but none of the other ones and she suggested that it was probably from the insertion of the catheter and not the BCG.

I was also searching online to see how long your immune cells work at attacking the abnormal cells with BCG. I was trying to see if your immune cells only went after the bad cells while the BCG was in the bladder of if there is a lasting effect for hours, days or even weeks. But I couldn't find any definite answers.


Hi Clyde,
I'm having my 3rd BCG instillation tomorrow. With my first instillation, the nurse really trashed my urethra, and it was very painful to urinate for a few days. On my 2nd BCG, I requested lidocane, and there was huge difference - Much better. I'll bet your bleeding was from the catheter.

Regarding bladder pain or reaction from the BCG, I'm really monitoring this experience, and so far, it seems that I'm getting decreased bladder capacity and some burning at the end of urination on the 4th day after the instillation. There's really no pain on the day I get BCG, or on the day after. I'm not sure if this pain and swelling on the 4th day is coincidental for these last two treatments, or if it can be tied to the treatment. I'll post my findings as I move through this. So far, for me, it's been more tolerable than I expected.

Mike

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2 months 3 weeks ago #60217 by Clyde
Replied by Clyde on topic Carcinoma In Situ diagnosis
Finished BCG installation # 6 today. No side effects except for some burning for a few hours. Now I have to wait until February for a scope and cytology test to see if the treatments were effective. I'm hoping and praying that they work.
I did ask the nurse why I would pass blood after the first installation but none of the other ones and she suggested that it was probably from the insertion of the catheter and not the BCG.

I was also searching online to see how long your immune cells work at attacking the abnormal cells with BCG. I was trying to see if your immune cells only went after the bad cells while the BCG was in the bladder of if there is a lasting effect for hours, days or even weeks. But I couldn't find any definite answers.

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3 months 3 days ago #60188 by Clyde
Replied by Clyde on topic Carcinoma In Situ diagnosis
I completed number 5 of 6 BCG treatments today. So far so good. I did notice a few days after treatment #4 I had some minor flu like symptoms for a day. I’m chalking that up to BCG. We’ll see if it happens again later in the week.

I did ask the nurse about using lidocaine prior to the catheter and she told me that is standard procedure with BCG.

I also asked the nurse why I would have blood and other particles coming out after my first BCG treatment. But then no blood, just normal looking urine for all the other ones. She wasn’t sure but suggested I could have had some lingering trauma from the cystoscopy I had a few days prior to the first BCG treatment. I was hoping the first treatment got rid of all the abnormal cells and the rest of the treatments were just scouting around and doing clean up ;)

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3 months 1 week ago #60168 by swarmy2007
Replied by swarmy2007 on topic Carcinoma In Situ diagnosis
My problem after having near 40 instillations is if I stand up to leave I void..... no stopping that fact. So lay on table and nap & read Bible. On the Lidocaine I have ask my doctors to not use it due to mess and fact it worsens the retention issues with me and they are adamant about using it.... for ease of catheter insertion. Truth is I'm such an old hand at doing this that catheter doesn't bother me much at all anymore. Also they tend to insert the cath immediately after lidocaine which makes no sense to me.... least give couple minutes to numb a bit? Just an added mess to me that prefer not have.

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