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The first 4 months part 1

12 years 10 months ago #7512 by Rosemary

The BCG protocol as laid out to me with T1 G3 dx and no recurrance was exactly as Yosarian was expecting. I personally ASKED not to continue with maintenance BCG and my Doctor is okay with that, and, I am okay with that.

I feel very positive as to Yosarian's outcome without BCG maintenance such as Dr. Herr seems to indicate, however, it was Yosarian's question as to continuance of BCG and not mine. In my opinion, the question fairly deserves an answer.

That's all.

Best regards,

Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
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12 years 10 months ago #7504 by Patricia
Rosemary....there is no evidence of recurrence..the mitomycin and BCG did what it was supposed to do. There's no reason to continue the regimen with a clean scope.
And Harry...well he's a piece of work but he's good!!!
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12 years 10 months ago #7503 by Rosemary
Hey, Yose,

I'm glad that your cysto went so well, but, this scenario makes me uncomfortable. I think I would have had to ask "WHAT'S THE BIG DEAL ABOUT ME ASKING A QUESTION?"

I would really want to know. ???

As my comment above is no help to you whatsoever, let me just ask you what are your options? Do you have a local urologist who works in conjunction with Dr. Herr and would be getting the test results and can consult with you? Otherwise, it seems to me that the converation, at least on Dr. Herr's end, has completely dried up.

Do you feel like you are hanging there, Bud? It seems to me that if you have done your homework and that you WANT the BCG maintenance, that you should have a doctor who would work with you on this.

Any other opinions on this?

Best regards,

Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
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12 years 10 months ago #7502 by Patricia
Hi YO!!......well you rattled their cages didn't you? My guess is more than one person is asking about the "blue light"..... ;D
Personally i would feel comfortable with Dr. Herr saying "I'll see you in 3 months"...obviously the Mitomycin and 6 rounds of BCG did what they were supposed to do. Mr. Personality sees a lot of bladder cancer so i'd go home and celebrate for 3 months.
Congrats on a clean scope!!! Pat
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12 years 10 months ago #7500 by Yosarian

Adventures in BC land ....

Hello all ...an Update on my latest trip to Memorial Sloan Kettering .....

As I mentioned in my last post I have been more than a little apprehensive, afraid, scared, worried, sleepless, nightmarish considering my appointment with Dr. Herr on Monday August 13, 2007 and what he might find and or recommend. As anyone who has read my tomes knows I am T1G3..The borderline case according to my Florida Uro. I have almost no knowledge at all about bladder removal as even reading about it makes the aforementioned apprehension, fear, anxiety etc. even worse. So I have played Ostrich ....foolishly I know but that’s another dimension of my human frailty.

I have just returned home to Florida (on a fairly cheap Delta flight –thanks for the tip Pat) at about 5 PM tonight (Tues 8/14)

Here in lies the tail...of my Trip to MSK and Dr. Herr. My wife and I flew into Conn. On Sunday afternoon where my son lives and he picked us up at the airport and we stayed at his home that night and he graciously took time off from work and drove us into the Big Apple for my 11:30 appointment. (if you go leave plenty of time as even getting INTO the parking area is a traffic wait). Anyway we got there at 11:20 and went to the waiting room. I was told to give a urine sample which I did.

At about 12:30 my name was finally called and I was escorted to the cystoscope room by a nurse I recognized from my TUR and asked her if they used Blue Light technology. She acted shocked (and perhaps offended) that I would ask. She said “Where did you hear about that and why would you want to know? And are you saying you wouldn’t want to see a Dr. as wonderful as Dr. Herr if he didn’t have one?” By this time we reached the exam room where she told the nurse that was there “He wants to know if we have a blue light, can you believe it?”

This nurse then said “I’ll answer you but first you need to tell me where you heard about it and what it does?” So I told her I read about it on the internet and that I believed it helped to see cancer tumor cells that a regular scope might miss. She then confirmed that yes they do have it but implied they didn’t need it!

I then did the dressing gown, get on the table, put your legs in the stirrups, slide your butt down, “this betadine might be cold “ routine. My blood pressure was then taken (about 25 points higher than usual) as well as my pulse. As if on queue, Dr. Herr came the second the prep was done and said “How are you doing ?”. I replied “ah okay I guess “ and the next thing I know the nurse is telling him I asked about the “Blue Light” as he began to insert the scope. At that time I began to watch the monitor in deep fear I (or more likely Dr.Herr ) would see the beginnings of a new tumor. He then looked around in my bladder for about 20 seconds and said it really looks more green than blue and flipped a switch and the screen turned a greenish hue for 2 or 3 seconds and then switched back to white? Light. After maybe 15 more seconds he pulled the scope out and to my immense relief said “Looks Good-see me again in three months”. Dr. Herr was then taking off his gloves and said “Any questions?”. I said yes ...”What about BCG maintenance?” He replied “No maintenance just see me in three months” and walked out!

The nurse said to clean up and get dressed ---which I did and when I retuned from the dressing area the room was empty. I went to the reception area and made the appointment and asked to see Dr. Herr or one of his staff that could answer some questions. I was told yes but not for two or three hours and perhaps it would be better if I phoned in the questions. I couldn’t wait that long as my son (my ride) was missing his work so we left after making an appt for 11/12/07.

I must say I still don’t know anything from the urine test or even what to expect but I was VERY relieved to hear “Looks good” whatever that means.

MY question for you ...PLEASE HELP...Isn’t BCG maintenance recommended by most for me now? I had the two TURS, Mitomycin C after the first then my 6 week BCG regimen after the second TUR and then 6 weeks off until the Dr. Herr visit yesterday.

So what is recommended and what would you do?

Thanks for reading. And best to all,

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12 years 11 months ago #6727 by Yosarian
Ciao Alice, Rosie, Pat, Rosemary, et al................

Greetings and Salutations from the backward Graveyard chicken bone burying whistling guy.......

Rosie ..I so much agree that it does feel good (psychologically speaking anyway) to be doing something to fight this concealed adversary.....the Westinghouse effect...? I also thought that “DIS-EASE” was really cool. And I do worry about Vitamin OD so maybe I’ll Bury a few vitamins with the chicken bones.........Thanks for the words to the wise.

And Alice please don’t worry....I consulted my Hogwarts reference books on Chicken Bone burying techniques and basically they said there is no wrong way to bury a chicken bone .....also, as to waking the dead ...A Monkey’s Paw is required for that...and then only on the second wish....and as far as Zombies go, I wouldn’t worry ...my in laws are still in New York......kidding ( God I hope they didn’t hear me!)

Anyway, I hope the bones decree good health for all who venture onto this board for themselves or for loved ones and above all to those kind enough to have responded to moi....
While My Guitar Gently weeps,

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