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Recent diagnosis of early stage T1 NIMBC: Any tips?

Posted by kctom26 @kctom26, Apr 14 6:06pm

Greetings. I am 69, and diagnosed in January with early stage T1 NIMBC. Was being treated for what was thought to be hematuria related kidney stones. Only risk factors were being male and over 55. Had 1 TURBT in Kansas City in January. Wanted a second opinion before going further. Got connected to Mayo Clinic at my wife’s suggestion. Have had 2 TURBT surgeries there since. Pathology has remained the same. T1 NMIBC. Scheduled to begin my 6 week BCG treatments in early June at Mayo. Encouraging, yet somewhat apprehensive. Have been doing a lot of reading up on the process, but would really appreciate any suggestions to make it go easier.

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dks2500 | @dks2500 | Apr 16 8:48am
In reply to @txtim "@dks2500 I’m being treated at another major medical center, UT Southwestern in Dallas. My doctor has..." + (show)
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@dks2500 I’m being treated at another major medical center, UT Southwestern in Dallas. My doctor has two trials underway asking just that question: how to tell if you will respond. One is using high resolution images of tumors, then following patients for a few years to see if A.I. can predict which will respond and which will not. (To the human eye they all look the same.) The other is using fluid obtained during cystoscopies (sorry - “backwash” for lack of a better term) to ask the same question. My doctor says that right now there is no way to predict, so that’s what he and others are working on.

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@txtim thanks so much, very interesting. I’ve read elsewhere that some teams have successfully used bio markers, but I don’t have any more info on that.

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kctom26 | @kctom26 | Apr 16 9:47am
In reply to @kevinpm "I hear you. 73 years old. Had one TURBT locally. NMIBC TA stage. Sought out Mayo...." + (show)
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I hear you. 73 years old. Had one TURBT locally. NMIBC TA stage. Sought out Mayo. Had TURBT, then BCG and then another TURBT. Scheduled for another 6 week round of BCG. I tolerated BCG well the first round and hoping the same for the next. BCG is just about 90 seconds of minor discomfort with catheter and formula instilling. I think less than 10% have a problem with the BCG and of those many have had chemo prior. If you’re at Mayo I believe it is the best place. My local urologist wanted to give me only half the dosage of BCG because of what they said was a nationwide shortage. I messaged Mayo and they advised to come there for BCG as they had no shortage. Go with Mayo.

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@kevinpm Thanks. Kind of an odd thing to be looking forward to, but I am. Keep this show on the road. Mayo has been great. 6 hour drive for us from Kansas City, but worth every minute. Their culture of care is amazing.

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kctom26 | @kctom26 | Apr 16 9:51am
In reply to @buena "Last year I completed two, six-week immunotherapy treatments with BCG. Because I'm incontinent I had to..." + (show)
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Last year I completed two, six-week immunotherapy treatments with BCG. Because I'm incontinent I had to remain on a padded table for 90 minutes each time. The table was comfortable and the staff supplied pillows and other amenities to help keep me comfortable. I brought along my iPhone and listened to music or podcasts. The only side effect I experienced was mild fatigue, but it didn't keep me off the golf course (I'm 65 and we do use carts). Insertion and removal of the catheter are nothing to worry about. Minimum discomfort for about ten seconds each time. The folks at Mayo are kind, caring, careful, capable and friendly. If you are not incontinent you'll be allowed to leave after injection of the BCG and instructed to expel it later. BCG is not my favorite form of recreation, but it's nothing to be anxious about. Best wishes for success.

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@buena Thank you. We are encouraged even though waiting for treatment to start. Mayo’s culture of care is second to none.

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kevinpm | @kevinpm | Apr 16 11:37am
In reply to @kctom26 "@kevinpm Thanks. Kind of an odd thing to be looking forward to, but I am. Keep..." + (show)
Profile picture for kctom26 @kctom26

@kevinpm Thanks. Kind of an odd thing to be looking forward to, but I am. Keep this show on the road. Mayo has been great. 6 hour drive for us from Kansas City, but worth every minute. Their culture of care is amazing.

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@kctom26 Agreed. 5 hour drive for me.

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gemdoc25 | @gemdoc25 | Apr 16 12:02pm
In reply to @txtim "@dks2500 I’m being treated at another major medical center, UT Southwestern in Dallas. My doctor has..." + (show)
Profile picture for txtim @txtim

@dks2500 I’m being treated at another major medical center, UT Southwestern in Dallas. My doctor has two trials underway asking just that question: how to tell if you will respond. One is using high resolution images of tumors, then following patients for a few years to see if A.I. can predict which will respond and which will not. (To the human eye they all look the same.) The other is using fluid obtained during cystoscopies (sorry - “backwash” for lack of a better term) to ask the same question. My doctor says that right now there is no way to predict, so that’s what he and others are working on.

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@txtim
I am being treated at Moffitt Cancer Center, Tampa for Ta high risk NIMBC. After my TURBT last September, my pathology slides were examined by an AI system called Vesta from Valar Labs, but developed at the Univ of Omaha. Biomarkers showed that BCG would not work for me, so I’m on Gem/Doce. After the 6 week induction I was clear and have started the 12- month maintenance with 3-monthly cystoscopy, the first of which will be next month🤞

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dks2500 | @dks2500 | Apr 17 9:07am
In reply to @gemdoc25 "@txtim I am being treated at Moffitt Cancer Center, Tampa for Ta high risk NIMBC. After..." + (show)
Profile picture for gemdoc25 @gemdoc25

@txtim
I am being treated at Moffitt Cancer Center, Tampa for Ta high risk NIMBC. After my TURBT last September, my pathology slides were examined by an AI system called Vesta from Valar Labs, but developed at the Univ of Omaha. Biomarkers showed that BCG would not work for me, so I’m on Gem/Doce. After the 6 week induction I was clear and have started the 12- month maintenance with 3-monthly cystoscopy, the first of which will be next month🤞

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@gemdoc25 thanks for sharing your experiences. Glad to hear you’re having success! Appreciate hearing about Vesta at Valar Labs. I will discuss them with my oncologist. My first biopsy said Ta, but results from the second will hopefully confirm that. We’ll see.

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141emp | @141emp | Apr 18 6:22am
In reply to @kctom26 "@kevinpm Thanks. Kind of an odd thing to be looking forward to, but I am. Keep..." + (show)
Profile picture for kctom26 @kctom26

@kevinpm Thanks. Kind of an odd thing to be looking forward to, but I am. Keep this show on the road. Mayo has been great. 6 hour drive for us from Kansas City, but worth every minute. Their culture of care is amazing.

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@kctom26 I feel the same way (but at a different major academic center in NY) Being surrounded by a great team and an awesome care culture was a game changer for me and worth every minute of the rush hour commute. I’m only 25 miles away but it can take 2 hours each way depending on appt timing .

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kevinpm | @kevinpm | Apr 18 8:47am
In reply to @gemdoc25 "@txtim I am being treated at Moffitt Cancer Center, Tampa for Ta high risk NIMBC. After..." + (show)
Profile picture for gemdoc25 @gemdoc25

@txtim
I am being treated at Moffitt Cancer Center, Tampa for Ta high risk NIMBC. After my TURBT last September, my pathology slides were examined by an AI system called Vesta from Valar Labs, but developed at the Univ of Omaha. Biomarkers showed that BCG would not work for me, so I’m on Gem/Doce. After the 6 week induction I was clear and have started the 12- month maintenance with 3-monthly cystoscopy, the first of which will be next month🤞

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@gemdoc25 That's so great! Eat well. It helps.

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sbassmeister | @sbassmeister | Apr 18 10:33am

I’m interested in this topic as well. I was diagnosed with NMIBC after two TURBT procedures. I start treatment on May 2nd, 1 treatment per week for 6 weeks. They don’t know yet what I’m getting as they said currently there is a shortage of BCG.

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tootall10 | @tootall10 | Apr 20 5:33am

One thing I think would be a good idea would be to have a list of all the abbreviations so someone reading the blog could understand what we are all talking about. Example .. what is 'Ta high risk NIMBC'? verses regular old NIMBC?

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