advice sought about AZO dosage

JigStep
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5 months 2 weeks ago #62070 by JigStep

Replied by JigStep on topic advice sought about AZO dosage

I agree that the instructions focus on UTI sufferers. The nice thing about a series of negative biopsies, other than the obvious, is that I reached the 6-month cystoscopy interval, so the disease doesn't get as much head time.

7/18 Gross hematuria; 8/18 TURBT: papillary urothelial carcinoma, LG, T1; 12/18 TURB: benign urothelial mucosa, cystitis; 9/19 TURBT: papillary urothelial carcinoma, HG noninvasive; 6/20 TURB: NED, inflammation; 10/21 TURB: NED, inflammation.

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opaz_67
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5 months 3 weeks ago #62069 by opaz_67

Replied by opaz_67 on topic advice sought about AZO dosage

Hi, glad you've been getting some negatives for C. I think that 2 day advice for Azo is aimed at people with a UTI - ie they want you get the infection sorted not just cope with the symptoms. As for in California they think it gives you cancer.. reckon that could form the basis of a Randy Newman song.

I'm a Brit living in France. I was diagnosed with high risk non-muscle invasive bladder cancer in 2021

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JigStep
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5 months 3 weeks ago #62066 by JigStep

Replied by JigStep on topic advice sought about AZO dosage

Opaz: I've had cystitis issues ever since my dance with bladder cancer began. I've had three or four biopsy sessions that came back negative for cancer because my URO wanted to know whether the erythema he was seeing was CIS. I had to stop BCG after two instillations because a bladder bleed that had to be cauterized. I pass some calcified material occasionally, and can't hold too much volume, which can make urgency an issue. I've taken AZO, but have not found it to do much for me, except to turn my piss bright orange. I think I've taken it for a day beyond the 2-day recommendation. Hope it will work for you. The box I have says ask your doctor if you're going to take it more than 2 days. And I just noticed it also says, the active ingredient is "known to the State of California to cause cancer."

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opaz_67
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5 months 3 weeks ago #62065 by opaz_67

Replied by opaz_67 on topic advice sought about AZO dosage

Thanks for your reply Sarah Anne. Reducing the BCG dose is certainly something that I might have to do longer term. In fact I have no idea what dose of BCG I am receiving - I just assumed it was the 'normal' dose.

(nb - I have had two 6 week inductions and three 3 week maintenance doses, so really I have had 21 doses of BCG)

I see the quotes from websites in previous posts were removed. The key one is below -

Stop using AZO after 2 consecutive days. If you’ve been taking a standard dosage of AZO and are still suffering from a urinary tract infection, then it’s time to stop and see your doctor. It’s possible that your infection has progressed and needs an antibiotic or other specific treatment.[8] Continuing to use AZO beyond this period can increase the possibility of suffering from side effects, such as loose stools.

So I'm deducing it's ok to carry on beyond the 2 days providing you can rule out UTI as the cause.

I'm a Brit living in France. I was diagnosed with high risk non-muscle invasive bladder cancer in 2021

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sara.anne
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5 months 3 weeks ago #62064 by sara.anne

Replied by sara.anne on topic advice sought about AZO dosage

Sorry to hear that the treatments are really getting to you. You do have some options:

First, it is possible to have the dosage of BCG reduced significantly. Dr. Donald Lamm, who was one of the early experts in the use of BCG in bladder cancer, suggested that as little as 1/10 the original dose could be effective. When I ran into very uncomfortable side effects after multiple BCG treatments, my urologist reduced the dose to 1/3 the original. Didn't solve everything, but was more tolerable.

Second, you have had a significant number of doses beyond the initial (usual) induction round of six. Many urologists consider every one additional as great. My urologist told me that many of his patients needed to drop out after varied multiple doses. However, the effects of BCG in reducing the recurrence of bladder cancer where still evident.

You should discuss these possible options with your urologist.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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opaz_67
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5 months 3 weeks ago #62063 by opaz_67

Replied by opaz_67 on topic advice sought about AZO dosage

From www.wikihow.com/Take-AZO:

I'm a Brit living in France. I was diagnosed with high risk non-muscle invasive bladder cancer in 2021

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advice sought about AZO dosage

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