Is there anyone with experience in bladder can... - CLL Support

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Is there anyone with experience in bladder cancer treatment?

RamsesII profile image
7 Replies

I am 74 and in CLL remission after a 24-month course of Venetoclax plus Rituximab completed in September 2023.

In July 2023 I was diagnosed with low grade, non-muscle invasive (PTa) bladder cancer and had a 12-month treatment with Epirubicin per respective protocol. Although biopsies at 3-month intervals during the 12-nonth treatment came out clean, the last one done two weeks ago showed recurrence of low grade, non-muscle invasive (PTa) bladder cancer. It seems that the most effective treatment would now be with BCG, which however is not recommended for people with CLL. I am due to see my hematologist this Wednesday to discuss the situation.

Meanwhile I wonder whether any of you has faced this dilemma and his/her experience or advice in this respect.

Many thanks!

Ramses

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RamsesII
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lankisterguy profile image
lankisterguyVolunteer

Hi RamsesII,

There have been several previous postings that mention Bladder Cancer- see:

healthunlocked.com/cllsuppo...

Also on that page and this page, look for the box labeled

"Related Posts

*Can CLL treatment or CLL cause bladder cancer? healthunlocked.com/cllsuppo...

*Bladder cancer and Cll healthunlocked.com/cllsuppo...

*CLL and bladder cancer healthunlocked.com/cllsuppo...

*CLL in bladder healthunlocked.com/cllsuppo...

*CLL Infiltration of Bladder healthunlocked.com/cllsuppo...

+

Len

RamsesII profile image
RamsesII in reply tolankisterguy

Many thanks Len for suggesting those informative posts. As always you are of great help!

Ramses

cmh55 profile image
cmh55

Hey Ramses,

I had high grade noninvasive papillary urothelialoma in 2022. Following transurethral resection, after healing, I received weekly BCG instillations for 6 weeks. After a clear cystoscopy, I had monthly Gemcitabine for 6 months. I’m now on 6 month cystoscopy surveillance. I was diagnosed with CLL in 2014 but have been watch and wait since.

cmh55 profile image
cmh55 in reply tocmh55

By the way, my urologist stated that BCG elicits a T cell response so CLL should not diminish effectiveness.

RamsesII profile image
RamsesII in reply tocmh55

Many thanks for your prompt and informative response. Have you had any side effects while on BCG and if so how serious were they?

Ramses

Spark_Plug profile image
Spark_Plug

Bacillus Calmette-Guerin (BCG) Treatment my.clevelandclinic.org/heal...

Information about what BCG means.

cmh55 profile image
cmh55

No real side effects. I did take phenazopyradine(AZO) before instillation which helped ameliorate urge too urinate. You can’t take it too early before a urinalysis test as it discolors urine. My appointment routine was: check in, have a urine sample, and then wait for results and preparation of BCG( it’s compounded at the time of usage). You can be safe and take AZO after urine sample. It does take about an hour to be effective. By the way, I did have to take 2 AZO tablets before Gemcitabine instillation as my system reacted greater to it. Wait time for this is less as it doesn’t take as long to prepare. Good luck!

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