Bladder Cancer with CLL

[fish61]

CLL since 2012 ( Ibrutinib 5 years , Gayzva 6 months , Acalabrutinib 2 years ) now bladder cancer , high grade , no wall penetration .... advised to take BCG for 6 weeks every 3 months for a year ... anyone shed light on what I can physically expect from the BCG ?

[PaulaS Volunteer]

So sorry to hear about the bladder cancer, Fish61...

I've no idea what you might expect from the BCG, but hoping/praying it all goes well.

Best wishes

Paula

[Jm954 Administrator]

I found this information from the American Cancer Society, hope it helps

cancer.org/cancer/bladder-c...

and this one

cancervic.org.au/cancer-inf...

Jackie

[OTBCdave]

I had a similar experience 11 years ago. After the cancerous growth was removed - after 2 ops - I had one course of 6 weekly treatments of BCG. I didn’t have any issues with the treatment and after having cystoscopies at increasing intervals over a 5 year period I was finally declared clear. Since having the problem I have made a habit of drinking a minimum of 2 litres of water a day. My CLL was first detected at the time of the bladder cancer op but the diagnosis wasn’t confirmed until 6 years later and I am still on w&w.

[fish61 in reply to OTBCdave]

Good to hear , thanks for the insight .

[Big_Dee]

Hello fish61

If I remember correctly one of our past members with CLL had bladder cancer and he posted a lot of helpful information. His username was cllcanada. You can request instructions from one of the administrators to look up this information. Blessings.

[ttomo in reply to Big_Dee]

Sadly we lost Cllcanada in 2019.

[Big_Dee in reply to ttomo]

Hello ttomo

Yes we did, but his posts I believe are still intact. The man was a mountain of information.

[fish61 in reply to Big_Dee]

Thanks Big Dee