CLL + Bladder cancer + prostate cancer - CLL Support

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CLL + Bladder cancer + prostate cancer

Brucex100 profile image
13 Replies

I've been diagnosed with Cll since 2016 and been on Acalabrutinib for 2 years which is working really well along with monthly plasma ivig infusions. I'm 63 and male and fit and active. I just got diagnosed with Bladder cancer with a medium grade carcinoma. My uroligist has burnt the 2 spots she found. Usually they treat this with Imunotherapy where they fill the bladder with a fluid containing teburculosis. That causes the immune system to find the cancer cells and kill them. My specialist is worried that due to my cll I may not react well to that treatment. - Has nayone on ACAL been treated with this. At the same time I have been diagnosed with prostate cancer Gleeson scale 3+4 - so this will need treatment as well. So at some stage I will need to get that removed.

Any advice from others on Acal who have been through this would be welcome.

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Brucex100 profile image
Brucex100
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13 Replies
CoachVera55 profile image
CoachVera55

No experience but I said a prayer 🙏🏾

LeoPa profile image
LeoPa

Are these 2 C's unrelated or did one spread to become the other?

Brucex100 profile image
Brucex100 in reply to LeoPa

I think they are unrelated -

Saju21 profile image
Saju21

no experience or advice but wishing you well in your battles with both cancers and your CLL- your experience of secondary/additional cancers does give pause for (alarming) thoughts around those risks.

Mtk1 profile image
Mtk1

Hi Bruce, I am also battling bladder cancer, I have been on acalabrutinib for over 2 years. Before starting acalabrutinib I was receiving the BCG treatment and it was working well, unfortunately when I started acalabrutinib and then went for BCG top ups I felt really ill and this caused heart issues, so I had to stop BCG as they thought the 2 treatments together were making me ill.

Unfortunately my bladder cancer has since come back and I’m awaiting results of biopsies before starting another treatment probably Gemcitabine, I will find out next Monday when. There are lots of 1st line treatments for bladder cancer that may be a better fit for you, hopefully they work for you and I wish you well going forward, and if I can help anytime just ask.

Good luck Dave.

Brucex100 profile image
Brucex100 in reply to Mtk1

Hi Dave thanks for your info

I will discuss with my specialists

this diagnosis is pretty hectic

I’ll let you know what they come up with

Thanks Bruce

hhk50 profile image
hhk50

Sorry, Bruce. No advice, but I am interested in seeing the responses to your question because I am in the similar situation. Next week, I start immunotherapy for a cancer that spread from my skin to my lung. Spindle cell neoplasm.

I was wondering about how immunotherapy works on we CLLers, who have little B-Cell immunity?

cmh55 profile image
cmh55

Hey Bruce,

I was diagnosed with cll in 2014. currently untreated. Diagnosed with high grade noninvasive papillary urothelial bladder cancer in 20222. Alc at the time was 125 other values normal. Had tumor resected and one month later weekly BCG( bacteria) instillations. For 6 weeks. After that, monthly Gemcitabine instillations for 8 months. All went well. Good luck!

cmh55 profile image
cmh55 in reply to cmh55

In addition, I was told immune response to BCG is T-cell not antibody.

Mtk1 profile image
Mtk1 in reply to cmh55

Hi, I’m interested to know how the Gemcitabine was for you, I may be starting a course soon.

Thank you Dave.

Big_Dee profile image
Big_Dee

Hello Brucex100

I don't have any suggestions but wish you the best. Blessings.

Janie67 profile image
Janie67

Praying that it will be in control. I have CLL and taking Calquence and had infusion but haven’t had any other cancer. ( So far ) ❤️

cmh55 profile image
cmh55

I was supposed to keep Gemcitabine in for 2 hours. However, only lasted 45 minutes. Then took 2 AZO pills 1/2 to 1 hour before installation and that solved discomfort problem . Don’t take AZO before urinalysis as it affects results. One pill didn’t do it, by the way.

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