Recently diagnosed & scared

2 months 2 weeks ago - 2 months 2 weeks ago #60322 by DonaldK
Replied by DonaldK on topic Recently diagnosed & scared
RileyNH

Way to go, glad to hear round two was much more tolerable.

How you have an excellent holiday season.

Keep us in the loop.

Hi Grade T1 CIS

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2 months 2 weeks ago #60321 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Ok 2nd BCG treatment went well. No bladder spasms when the catheter went in and will credit oxybutynin with making that happen. Been taking the extended release every day. They got the full 50cc in my bladder and I was able to hold it for two hours. Whew! One more and I am half way done. Thanks for all the advice and support after my not so spectacular 1st treatment.

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2 months 3 weeks ago #60287 by DonaldK
Replied by DonaldK on topic Recently diagnosed & scared
Riley

Sure sure, there are a variety of dosing recommendations out there - the research study I was in used 80cc's

I was in a comparison of the TICE (American) and TOKYO (European) versions of BCG.

Keep after it, hope your night goes well.

Ciao

Hi Grade T1 CIS

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2 months 3 weeks ago #60285 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thanks Donald and I completely understand what you mean about the doctors focus and my need to be clearer and continue to advocate for myself.

Just to clarify the dose was suppose to be 50cc I saw the applicator filled with 50cc of bcg before it was pushed into me so not sure if different treatment is done by doctor or by the patients need.

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2 months 3 weeks ago #60284 by DonaldK
Replied by DonaldK on topic Recently diagnosed & scared
RileyNH

Congrats on getting the first dose :)

So remember, the onco doc is typically treating the disease, not the patient (unfortunately).

Be sure to discuss with the nursing staff your concerns/needs/wants -they should be able to communicate 'better' with the doc. But the treatment is yours and you have every right to make the onco doc understands what is going on.

Oxybutynin didn't do much for me, we also tried Myrbetriq - but again not a lot of help. Although it may do better for you.

My guess is the dosage was supposed to be 80 cc's - but the research out there shows lower dosages have almost exactly the same outcome (about 2% difference).

Unsure if your facility has team treatment staff (nutrition/psych/etc.) - if you can access these people they too can assist with communication and as resources to meet your needs.

Some of what you describe (swelling, taint discomfort, etc.) is most likely due to the catheter, but also may be from the BCG as it is supposed to create an immune response.

You mention azo - looking it appears to be an OTC, so unsure just how effective it will be for this.

Final thoughts - the doc doesn't really have an understanding of urgency. They hear the word, but have never experienced it. Be sure you explain as fully as possible (' I have to use the toilet every 5 minutes or I am at a 6 of 10 pain scale, I feel like my bladder is not completely emptied after I pee, I only pee about 2 ounces of urine each time I go, I have difficulty initiating a stream, my stream is weak compared to before my TURBT, etc.) You get the point, one person may say they have urgency and it means they have to go every 3 hours as opposed the their normal every 6 hours, so making sure you explain with respect to your 'normal' will be beneficial.

Please keep us informed, keep the water flowing in, and the pee flowing out as this will help.

We are with you in spirit through your journey.

Hi Grade T1 CIS

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2 months 3 weeks ago #60283 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
OK well my first BCG treatment didn't go exactly as planned. My bladder spasmed and they could only get 30cc in me. I did the position rotation fine and held is for as long as possible but 5-7 minutes shy of the two hours. I absolutely can feel swelling with slight uncomfortable in my "taint" area which I believe was suppose to happen and is most likely an immune response to the bcg.

New game plan is to start using the long release oxybuttin tomorrow morning until next Wednesday morning and then will take 2 of the immediate release pills just before my 2nd bcg which will actually be my first since I got shorted today. That should help with the spasms.

Since my last turbt I have had urgency issues and azo does help a little . I had told my doctor all along but he kept recommending azo and lots of water which I did.

I think he should of considered my urgency issue more before the first bcg.

Any thoughts from anyone?

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