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The first 4 months part 1

11 years 11 months ago #10714 by Patricia
Hi ya Yosarian!! Glad to see you posting again and your sequel to "War and Peace".. ;D........So what surprised you about your visit...wasn't that about what you expected from the highly impersonal personnel at MSK....and the ever talkative Dr. Herr? Herr i would put up with...but "V"..hmmmmm i think i'd call the patients advocate at MSK....tell them they could be a little more helpful and pretend like they care a little. Its got to be difficult to get people to work in that environment...i wouldn't want to do it..too depressing.
Anyway congrats on a clean cysto and have a happy turkey day.
Pat
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11 years 11 months ago #10711 by Yosarian
Hi to all again --here be the rest of the story....for now

On the other hand we emailed the wonderful Dr. Lamm and explained our situation
about previous BCG dosage and reactions and the timing of our next cysto.
Here are the emails: First mine then Dr, Lamms’ response

(*******@hotmail.com) on Thursday, November 15, 2007 at 12:26:04
> >
> >
> > question: Subject: Timing of Cystoscopy and BCG dosage.
> > My husband had TURBT 4-20-07 by FL urologist.
> > Second TURBT 5-10-07 Sloan-Kettering by Herr (2nd opinion)
> > BCG in FL - 6 weeks 5/29-7/3
> > Cysto at Sloan- 8/13/07 all OK
> > BCG maintenance (3) at full strength in FL (8/22-9/5)
> > Cysto at Sloan - 11/12/07 All ok but identified one "area of redness" .
> > Urine test negative for cancer cells. Suggested 1/2 strength BCG. (Dr.
> > Herr agreed to let us have BCG) Our FL urologist seems reluctant to
> > reduce (or dosen't have staff that knows how. Last BCG (9/5)had most
> > severe side effects (fever 100 degrees, freq, urgency, lasting 1 week.
> > Next Cysto not for over 6 months. (6/2/07-at Sloan)
> > 1) Should he have it in 3 months?
> > 2) Should we insist BCG be reduced strength? 1/2, 1/3 ??? Thank you.
> > Your website is a godsend.
>
Date: Sat, 17 Nov 2007 19:54:21 -0800
> Subject: Re: Ask Dr. Lamm
> From: This email address is being protected from spambots. You need JavaScript enabled to view it.
> To: @hotmail.com
>
> BCG Dose Reduction; 3 Week Maintenance BCG
> Dear Friend,
> Your husband's severe reaction to continued full strength BCG is just what
> is expected. ONly 16% of patients were able to take full strength BCG at
> each of the schedule 3 week maintenance periods. By reducing the dose to
> 1/3 (not 1/2), with subsequent reductions (1/10, 1/30, 1/100) we are able
> to get most patients through the entire program- even with extension to
> more than 10 years when needed. The dose of TheraCys BCG (Connaught)
> varies from 2 to 19 hundred million colony forming units per vial.
> Cutting the dose by half could easily keep the dose within the range of
> "full." It is not rocket science to reduce the dose. For 1/3, you take
> 16.6 ml of the 50 ml dilution. For 1/10th you take 5cc, and so on. I
> would not wait for 6 months for a follow up cystoscopy. The standard
> protocol is every 3 months for 2 years, every 6 months for 2 years, and
> then yearly for patients who have high risk (G3, T1 or CIS) disease.
> Check my website/lectures for the specifics on the schedule- and thank you
> for your compliment on our website- my son is our "webmaster."
> Best regards,
> Don Lamm, MD
> PS: Arizona is lovely this time of year.

Anyway, I had my first maintenance BCG (10th overall) yesterday –Monday 11/19/2007.
I discussed it with my Florida urologist and even showed him Dr. Lamms email (which I
edited a little ) so as not to be offensive. I talked him into doing a 1/3 dose as opposed to
the 1/5 dose he was going to do ( because it was easier to mix!). He said he had heard
Dr. Lamm lecture at conferences and was wonderful. Anyway I had to make sure I got
the full 50 Mls diluted to 1/3 as opposed to getting 16 2/3 mls of the full strength BCG.

Anyway, I am glad it was diluted as it certainly worked...in a bad is a good way.... I must
have urinated 40 times yesterday with much urgency and some pain and a very small
amount of blood. I also have/had mild flu symptoms, very mild fever ( about a degree)
but somewhat stiff and ache etc. It is a pain but a pain I will happily accept

Anyway I am scheduled to get BCG maintenance #2 (11th overall) and #3 (12th overall)
this coming Monday 11/26/07 and the Monday following that 12/3/2007. I hope the
reaction doesn’t increase too much.
So that’s it for now ..I hope this provides some helpful info to someone out there...I f not
–at least it helped me to write it...
And Once again ...thanks to all the people who truly contribute to this wonderful sight
and in fact help so many......
Your BC Buddy,
Yosarian
I almost had a psychic girlfriend but she left me before we met.
OK, so what's the speed of dark?
How do you tell when you're out of invisible ink?
I'd kill for a Nobel Peace Prize. Steven Wright








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11 years 11 months ago #10710 by Yosarian
BC Wars –Part 22 or so................

Just when you thought it was safe to go back in the water...............


Hello All,
I truly hope this finds everyone the best that can be expected and even a tad better...........
I am sorry I have been away for the couple of months but I wanted to have something as
close to “BC worry free time” as I could possibly get.

Anyway I wanted to give you a quick Update on Moi and thank you for all your good
thoughts, prayers, wishes, karma, etc. not to mention advice and great information.

So here goes...

On 11/12/2007 my wife and I flew up to Memorial Sloan Kettering in NYC to have my 6
month (7 really) Cystoscope Exam & Urine Cytology test. Being the coward that I am I
was increasing frightened as the deadline approached. Anyway I had made my
appointment during my last cysto 3 months ago. We called that morning just to confirm
the time they said that my 11:30 appt. was cancelled by someone –they weren’t sure
who–but it was cancelled. We said we didn’t and had just flown over 1100 miles to see
dear Dr. H. and it wasn’t cancelled by us!


Anyway, to make a long story short they rescheduled us for 2:30 and in essence said we
should be very grateful that they were correcting their error! Anyway what else could
we do but smile and take the new appt! After what would be about a $55 cab ride we got
there and entered into the waiting room that looks to be a milling throng of the restless, worried, and sad—
all gathered there- waiting there in the belly of the beast to find out there fate. Nary a smile in the place ......

After waiting until about 3 PM I finally got called into the exam room and “prepped” and
Then waited there in the stirrups for about 15 minutes ..........my blood pressure and pulse
had sky rocketed with anxiety when finally the great Dr. H came in and did the Cysto.
He took about 3 -5 minutes (which was longer than 2 minutes last time) and I watched
the TV screen he said I looked “clean” but there was a slight red area (that he apparently
took several pics of) but it may have been from an infection or the a previous catheter
yada yada . He then said he would wait until the urine cytology test came back and if
there were any C... cells in it then we would “scape it out” ( I assumed in another
TURBT). Anyway I was still in the stirrups while he said all this and I couldn’t see his
Face. He then said the urine test would be back either Tuesday (the next day) or as late
as Wednesday---and then if it was positive we would schedule the next step. Next as I
got up and was handed Kleenex to start “cleaning myself up” I spoke this back and
asked about maintenance BCG and stated I wanted to be as “proactive “ as possible in
fighting my BC ..he said too little a dose wouldn’t help and too much could be very
irritating so a 1/3 dose would be best if I was going to do it. Next thing I know he was
gone and I was told to get dressed. I was still trying to decide if I just heard good news
(I thought it was Mostly good)

Anyway we decided to fly home to Fl. and wait for the news tomorrow or the next day to
see if we had to fly back. Well as expected ...no news on Tuesday and nothing by 3 PM
the next day –Thursday....So we called and got “V” ..the Gate Keeper....She couldn’t
have been more rude or less helpful or more dismissive. This was very important info to
us as it would tell if my C was still present but to them it was a power move....as least for
the secretary.—basically –you want the info –then you kiss my ass!

Anyway I called again on Thursday and was told there was no one I could speak too ----
the only to people in the office were her V and Dr. H and I couldn’t talk to him with out
going through her..so there! I asked if Susan (a nurse from there that was very helpful in
the past) and was told no she didn’t work there anymore and hadn’t been replaced ---so
“V” was my only contact hahahah! I then asked if there was a Hospital administrator I
could speak to and she said she could pass the message on but didn’t. About an hour
later I got a call from a Nurse who miraculously did work there and found out my urine
cytology was NEGATIVE!!! YES YES YES! And that they had scheduled me for
another cysto in June -seven months from now-which I thought was long as protocol I
thought was every 3 months for the first 2 years for a T1G3 but I knew that was a loosing
fight.

Anyway the results were WONDERFUL (and I am so thankful grateful happy etc) but

Process was AWFUL! Despite patients bills of rights etc. these folks are institutional
warped with their own importance and the arrogance is rampant!

The end of this part...more to follow in next post

Your BC Buddy

Yosarian the Happy for Now

P.S. More to follow --the end of this tome

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12 years 1 month ago #8198 by Yosarian
Hi Star, et all 9/20/2007

To save you reading my whole long story here is a brief chronology...

4/04/2007- Official Scare the crap out of me Bladder Can..Can T1G3 diagnosis
(I still can't say Ca ca can--you know what it mean)
4/20/2007 –First TURBT with Mitomycin C
5/10/2007- Second TURBT
5/29/2007-First BCG Treatment
6/06/2007-Second BCG Treatment
6/13/2007-Third BCG Treatment
6/20/2007-Fourth BCG Treatment
6/27/2007-Fifth BCG Treatment
7/03/2007-Sixth BCG Treatment
8/13/2007-Cystoscope Exam & Urine Cytology Negative –Yes Yes Yes
8/22/2007-First maintenance BCG Treatment (full dose) , seventh overall
8/30/2007-Second maintenance BCG Treatment (full dose) , eighth overall
9/05//2007-Third maintenance BCG Treatment (full dose) , ninth overall
11/12/2007-My next scheduled Cystoscope Exam & Urine Cytology-please send me all the luck (good preferably), Karma (preferably good once again), good will, wishes, prayers, light side of the force, incantations, four leaf clovers, rabbits feet (fake of course), and then some extra if you can for a good result!

As I said before the whole entire story is in the previous 6 boring pages of my battle (and love/hate// appreciation fests) with BC, BC doctors, Uro’s schedules, nurses, friends and family and more! As well as a touch of self pity and attempts to overcome fear...

I would love to hear a little of your History...Stage, Grade, time line yada yada yada –Are you being treated at Strong memorial Hospital?

And please know –I am sending you all the above mentioned luck (good), Karma (good), good will, wishes, prayers, light side of the force, incantations, four leaf clovers, rabbits feet,,yada yada I can!

Your BC Buddy....
Yosarian

PS...Hi Wendy, Rosemary, Patricia, Alice, Rosie, Doc S, Zach and all others on this dark journey-I truly hope this finds you and all those you love well....

Hollywood's a place where they'll pay you a thousand dollars for a kiss, and fifty cents for your soul. I know, because I turned down the first offer often enough and held out for the fifty cents.
-- Marilyn Monroe
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12 years 1 month ago #8180 by star
Forgive me but 9th BCG- in what time span? how many turbt's? I finished 7th turbt and going for round 6th Bcg in a 1yr 1/2. just wondering...
bless your bladder. star
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12 years 1 month ago #8176 by Yosarian
BC wars in Fla -part III section c paragraph 3 subsection 4/q

Yoyoyo waz up? or Hello again all,

Sorry for my absence but I have been trying to forget about my “BC” for awhile and do a little psychological healing and let better thoughts have a chance to flourish. I dearly hope that all who visit this site have the best of all possible outcomes possible given the fact that that they are here at all.

In an attempt to give a complete chronicle of my BC experience in case anyone has similar circumstances I am giving an update on the after effects of my last (9th) BCG treatment that I had on Sept 6th.

I apparently am still experiencing side effects (pain while urinating, urgency, frequency, and a seeming continuing although intermittent “itch” within my bladder) from my last and by far the most reacted to treatment. After a week of those constant side effects with little abatement I called my Florida Uro where I had the last BCG treatment done –as I thought perhaps I had UTI. He responded that no it was probably just continued side effects from the BCG and he wrote me a prescription for Prosed/DS. -- (http://www.drugs.com/cdi/prosed-ds.html) for more info on Prosed/DS

These are small Dark blue pills (about $40 for 21 -a weeks worth at 3X/day). These pills (and perhaps time) seem to be gradually although unevenly diminishing these symptoms. One side effect of these pills is they eventually make your urine turn Blue ...so fella’s make sure you shake real well and clean-up as the blue stains like crazy and even the slightest few drops of incontinence gives you the “Blue Badge of Courage/shame” on the front of your pants !

Anyway.. After nearly a week of these little blue devils I am getting back to almost normal but mild symptoms still persist.

Hope this helps somebody...and once again thanks to all who have helped me!

Yosarian

The day after tomorrow is the third day of the rest of your life.
-- George Carlin (Sometimes a Little Brain Damage Can Help, 1984)
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