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Protocol for maintenance therapy with BCG

Posted by lannak @lannak, Jul 22 9:59am

I’m very curious what the protocols are for maintenance therapy with BCG after one has been in the 6 month treatment phase and had a clean cystoscopy. Thank you all in advance

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lannak | @lannak | Aug 9 11:16am
In reply to @talltxlady "Good morning @fmfran, I've been cancer free since my first 2 original surgeries (11/21 and 12/21)..." + (show)
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Good morning @fmfran, I've been cancer free since my first 2 original surgeries (11/21 and 12/21) removing the cancer and resectioning my bladder. No More Cancer as of yet. My next cysto is in October 2025 🙏

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Soooooo Amazing! God bless you going forward 🙏

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talltxlady | @talltxlady | Aug 9 12:56pm
In reply to @lannak "Soooooo Amazing! God bless you going forward 🙏" + (show)
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Soooooo Amazing! God bless you going forward 🙏

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Thank You and you too, @lannak, God bless you also 😊

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quahog | @quahog | Aug 10 10:46am
In reply to @lannak "I was was receiving 1mg and 1/2mg BCG for the first 6 treatments. Now my clinic..." + (show)
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I was was receiving 1mg and 1/2mg BCG for the first 6 treatments. Now my clinic in Chicago has decided that 1/3mg is sufficient. I am not aware of any phase 3 studies that show this. Mayo Clinic is one of a few urology departments that is administering the the full 1mg dose. Hospital greed? Definitely pharmaceutical (Merk, manufacturer) greed! Since BCG is expensive to manufacture.

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I’ve seen studies that are showing indifference in BCG treatment with 1/3 and 1/3 doses. With the BCG shortages having the lower dose is a good alternative. I am having significant progression of side effects in my maintenance program and am looking for lower dosing to alleviate these.

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talltxlady | @talltxlady | Aug 10 12:12pm
In reply to @quahog "I’ve seen studies that are showing indifference in BCG treatment with 1/3 and 1/3 doses. With..." + (show)
Profile picture for quahog @quahog

I’ve seen studies that are showing indifference in BCG treatment with 1/3 and 1/3 doses. With the BCG shortages having the lower dose is a good alternative. I am having significant progression of side effects in my maintenance program and am looking for lower dosing to alleviate these.

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I also took the lower doses 1/3. She always shared a dose between 3 people. Maybe that's why I had to do 3 years worth. But even with the lower doses, I still had the side effects of burning, frequency, a little blood, and occasional pain. Think it's just par for the course! The burning 🔥 always made my mind believe it was working and killing the cancer.

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fmfran | @fmfran | Aug 10 4:31pm

Thank you for responding. I have not heard of a bladder resection. I've had multiple TURBT since the removal of my tumor in 2020. I did the full gemzar treatment. That eventually failed. I completed my first 6 BCG treatments with success. This week I start my maintenance treatments. I'm praying for continuing success. I'm so happy for you. I'll keep you in my prayers.

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talltxlady | @talltxlady | 6 days ago
In reply to @fmfran "Thank you for responding. I have not heard of a bladder resection. I've had multiple TURBT..." + (show)
Profile picture for fmfran @fmfran

Thank you for responding. I have not heard of a bladder resection. I've had multiple TURBT since the removal of my tumor in 2020. I did the full gemzar treatment. That eventually failed. I completed my first 6 BCG treatments with success. This week I start my maintenance treatments. I'm praying for continuing success. I'm so happy for you. I'll keep you in my prayers.

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Hi @fmfran as far as I understand the TURBT is part of the resection.

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