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The first 4 months part 1

11 years 5 months ago #17956 by Yosarian
As promised ...

Here are the two emails from Dr. Lamm

Your BC Buddy,,,

Yosarian the wordy.......

Below is the result of your feedback form. It was submitted by
(@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.


Submit: Submit Question



Date: Sat, 17 Nov 2007 19:54:21 -0800
> Subject: Re: Ask Dr. Lamm
> From: @bcgoncology.com
> 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.


> > Below is the result of your feedback form. It was submitted by
> >@hotmail.com) on Monday, March 3, 2008 at 10:15:40
> >
> >
> > question: Dear Dr. Lamm
> >
> > My husband (now 60 yrs old) was diagnosed with T1G3 Bladder Tumor (papillary
> > transitional cell carcinoma) in April 2007. He had a TURBT and then
> > Myomiticin treatment at that time and a subsequent TURBT (negative
> > pathology for cancer) by Dr. Herr in May of 2007. He completed the 6
> > initial BCG treatment by our Florida Urologist, with subsequent
> > cystoscopies at 3months (followed by 3 BCG), 6 months (followed by 2 BCG
> > due to severe reaction to cancel 3rd), and now at 9 months another
> > Cystoscopy and a biopsy on a suspicious area to confirm no cancer cells.
> > (Benign urothelium with reactive changes was the diagnosis.) All good.
> >
> > However, our urologist suggested since my husband has had no recurrence,
> > that he discontinue the BCG treatments (12 month) since: a) previous
> > severe reaction which means he would reduce to 1/10 strength. b) Dr. is
> > not aware that such a reduced dose has been shown to prevent future
> > recurrence. c) The BCG treatments create areas in the bladder that look
> > suspicious thus prompting new biopsies. He is suggesting continued
> > Cystoscopies to monitor for tumor recurrence and then IF, a recurrence is
> > diagnosed, begin BCG again.
> >
> > Our Florida Urologist knows we have been corresponding with you regarding
> > BCG and values your opinion. The next scheduled BCG would be after our 1
> > year Cystoscopy in June. Since he has had no recurrence since the initial
> > TURBT (4-20-07), would you recommend continuing BCG at 12,18, 24, 36
> > months (also taking Oncovite, garlic, pomegranate and selenium) or just be
> > religious in getting Cystoscopies every six months/or annually to monitor
> > for tumor recurrence? We appreciate all you have done for the BC
> > community with your website.
> >
> > Sincerely,
> >
> >, Florida
> >

> Date: Mon, 10 Mar 2008 20:39:58 -0700
> Subject: Re: Ask Dr. Lamm
> From: @bcgoncology.com
> To: @hotmail.com
>
> Why Use Maintenance BCG If There is No Recurrence?

> Dear Friend,
> G3T1 bladder cancer is a dangerous disease, and I strongly advocate
> maintenance therapy. Maintenance is by definition given to those who are
> free of recurrence. It appears to be required for reduction in the risk
> of progression, and significantly reduces recurrence compared with
> induction or short course BCG.
> That said, it is also important to avoid toxicity. That can quite easily
> be done by reducing the dose. Can we say for sure that the "reduced dose"
> maintenance is effective? Not with randomized studies, but certainly with
> logic and experience- it works!
> Best regards,
> Don Lamm, MD


During the war an Italian girl saved my life. She hid me in her basement in Cleveland.

A priest is sent to Alaska. A bishop goes up to visit one year later. The bishop asks, "How do you like it up here?" The priest says, "If it wasn't for my Rosary, and 2 martinis a day, I'd be lost. Bishop, would you like a martini?" "Yes." "Rosary, get the bishop a martini!"

A guy says, "I'm so old that I forgot how old I am." An old woman says, "I'll tell you how old you are. Take off your clothes and bend over." The man does this. The woman says, "You're seventy four." The man says, "How can you tell?" The woman says, "You told me yesterday."
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11 years 5 months ago #17955 by Yosarian
Chronicles of the “BC Wars” –Eon-Phanerozoic, Era- Cenozoic, Period- Paleogene, Year 2008, Month- June, Day- Thursday the 12th- not sure of the time but Jerry Springer is on the Telly
Part 7 subsection 2a



YoYoYo---it’s Yosarian---and he’s Back! And he not mean cause his Bladder still be ahhhh! MR. CLEAN!

Hello all old friends (Patricia, Wendy, Rosemary, Rosie. Dr. S,Zachary, and all...) and new & old (older?) members I’ve never met...Just back to say hello and give an update since I last wrote a little over 3 months ago. I sincerely hope this finds all BC sufferers faring as well as can be hoped for(and even better)and on the mend and receiving the best care possible.And as always thanks to those of you that give so much to others both on this board and off.

As I said before I am sorry I am not more active on this board but between cysto’s I try and be as BC free as possible (mind and body!) and I find there are even times I am “BC thought free” if I do my best NOT to think about it. I admire and thank all of you with more fortitude to contribute more.

I did wish to report my [glow=red,2,300]good news [/glow] as well as some info. On 6/1/08 I made my bi annual 6 month visit to the famous (infamous) curmudgeon Dr. Herr at Sloan Kettering Memorial in the Big Apple. The waiting room in the basement still seemed like a scene from the “Village of the Damned” but this time the scheduling went well and my waiting time was less than an hour. The cysto procedure went fairly smoothly and I even got time to speak to Dr. Herr for 67.8 seconds AFTER the cysto was done (but while I was still in the examination room barefoot and wearing the lovely “open at the back” gown!)
BUT I was so relieved as I watched the cysto on the screen and my bladder looked beautiful to me --AND Dr. Herr agreed! No red marks or abnormalities of any kind! Before I had the cysto I had given him (well asked the receptionist to give to him) the paper work and cysto write up from my new Florida urologist that was done on 2/15/08 as well as the biopsy report. I wanted to make sure he had them in case the biopsy and subsequent cauterization had left any scars that might be confused with the beginnings of another growth. I asked him if he saw the reports before my cysto and he said “No” but then he looked on his clipboard and there they were. He chuckled that I had a 3 month cysto (here in Florida) between his scheduled every 6 months review and that I had a biopsy... but he said if that’s what I want “fine with him”. I once again asked him again about maintenance BCG and he said MSK had done studies showing it was useless but other studies said otherwise and it was okay if I wanted to continue but he “didn’t recommend it but do it if you want.” I asked if there was anything else I should be doing and he said “take vitamins, and don’t smoke” so I do and I don’t! LOL! He said my urine cytology report would be done the next day and as usual when I called the next day it wasn’t and the next day it still wasn’t (and the old panic started coming back ) but on the 3rd day I called and finally I got the very reassuring news that my urine cytology was negative! “Yippy kai yea mother ........!”

And I also asked him again about “Blue Light”. He replied “to use that technology you have to use a dye 30 minutes ahead of time and I do 30 cysto’s a day—so I just wouldn’t have time”. You can all draw you own conclusions about that.... to be truthful I was just so happy and RELIEVED to have a CLEAR CYSTO – I didn’t give a damn what the said!

On 06/08/2008 I had my 13th scheduled BCG treatment ...(actually only my 12th) since I skipped #12 during my last series of 3 because of a severe reaction). My new Florida urologist feels the same way about BCG maintenance as the Good Dr. Herr but knows of Dr. Lamms work as well and agreed to give me a series of 3 maintenance BGG treatments at the 10% concentration as recommended by Dr. Lamm. This, after reading my email correspondences with Dr. Lamm. I POSTED THESE TWO MESSAGES AS ATTACHMENT (NEXT)TO THIS POST.

I had my first 10% BCG on Monday June 9th and have tolerated it fairly well with only moderate reaction of some mild pain, urgency, and frequency but was back to near normal after 24 hours. My next treatment is scheduled for the 16th. The nurse who did my BCG treatment was very nice but OMG –incompetent. (one thing different about my new Fl urologist is he had me take a single macrobid antibiotic before the procedure where as my old one said taking an antibiotic would be counter productive to the BCG. So what a fella to do?) I took and kept my mouth shut as the nurse would have no idea and the Dr. was no where around!.

Anyway , I confirmed with the nurse I was to have the 10% solution and It was good I did. She had to go confirm that and then I heard her outside trying to get instructions on how to mix it and there seemed to be some disagreement. To make a long story short I had to try and explain it to her. She wanted to take 10CC’s of the full strength solution and mix it with “around 30 CC’s” of the “other stuff”. I tried to explain to her that 10% of 50 ML was 5ML and not the 10ML she insisted on... and that it should be diluted with 45 ml of buffered saline solution. I never really convinced her but then she said she understood and got the saline solution and I thought things would be alright. Wrong –next thing I see (after the shock of a quickly inserted catheter) was her with a small syringe with what looked liked 10 ml being pushed into the catheter. She said “I’m giving you the BCG now and then I’ll use “this other bigger syringe with the 30 ML of saline to dilute it.!” I was too late --- I saw she planned on doing the dilution IN MY Bladder! And that’s what happened! I’ll have to get it straight with the Doc next time!

Anyway, on another note ,,,I was first diagnosed on 4/4/2007 as (T1G3) and had my first TURBT on 4/16/07 and second on 5/10/2007 at MSK 20 days later. My first Florida uro suggested “I may be safer to have my Bladder removed” and would have eagerly done it if I would have allowed it. I now feel I was too juicy a bug for him not to try to catch! I was comparatively young (59 ) and thin and in all other ways in excellent shape. An excellent candidate and low risk!

Anyway it has now been over 14 months since first diagnosed and I have never felt better and if I didn’t have the constant worry and fear (somewhat diminishing with time) all would be super, So everyone-make sure you get a second opinion and a third! AND DON'T GIVE UP HOPE! Oh and yes my new Fl. Uro ordered another CAT scan to eliminate the chance of any tumor spread (like in my ureters etc) where you can’t see with the cysto. Something Herr & Msk doesn’t do.

Once again I wish you all the best and thank you to all of you who have the goodness and courage to help people on this board in on such as regular basis!

With great hope and respect, your BC brother in arms, Yosarian

“Expecting the world to treat you fairly because you are good is like expecting the bull not to charge because you are a vegetarian”

“7/5th of all people do not understand fractions.”

“A doctor gave a man six months to live. The man couldn't pay his bill, so he gave him another six months.”

A man goes to a psychiatrist. "Nobody listens to me!" The doctor says, "Next!"

Last night I ordered a whole meal in French. Even the waiter was amazed - it was a Chinese restaurant!
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11 years 8 months ago #14131 by Yosarian
2/29/2008

Yo yo yo Pat, Rosemary, Doc S, and all..

It’s great to hear from you all again and thanks for the advice....Doc S..I had Mitomycin C with my very first TURBT but have never heard of it as an ahh “maintenance” treatment... but it sounds reasonable-I’ll have to look it up....Anybody else here use it in that manner? Anyone else with that expereince?

Oh yes Pat I’m about a little over an hour North of Tampa...and Rosemary it's great to see you and Doc are still BC free...


I hope everyone has a great week-end...as well as week beginning and so forth...yada yada yada


Your BC Pal in Arms...........Yosarian

I told my wife the truth. I told her I was seeing a psychiatrist. Then she told me the truth: that she was seeing a psychiatrist, two plumbers, and a bartender.
-- Rodney Dangerfield

The toilets at a local police station have been stolen. Police say they have nothing to go on.
-- Ronnie Barker (from the Two Ronnies, 1972, BBC)

We used to play spin the bottle when I was a kid. A girl would spin the bottle and if it pointed to you when it stopped, the girl could either kiss you or give you a dime. By the time I was 14, I owned my own home.
-- Gene Perret

I was married by a judge. I should have asked for a jury.
-- Groucho Marx

When I told my doctor I couldn't afford an operation, he offered to touch-up my X-rays.
-- Henry Youngman

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11 years 8 months ago #14109 by wsilberstein
Dear Yosarian,
I hope you never need any additional treatment, but if you do, and can't tolerate BCG, how about Mitomycin C? I know BCG is the gold standard, but I never had it. My urologist preferred Mitomycin C, and the oncologist I consulted for a second opinion agreed that it was a reasonable choice. Wish I could promise it was side effect free, but I did pretty well with it until my urologist injured my urethra with a rough catheterization. After that I had urethritits with each treatment which led to today's stricture problem. But ;D I have remained cancer-free ;D.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...
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11 years 8 months ago #14108 by Patricia
Hi ya Yosarian......i think i'm going to make a movie or at least a documentary out of your posts!! Really great to hear the latest installment but sorry about the reaction to BCG...honestly i'd quit while i'm ahead.
I've kind of forgotten where you are in Fla? There's a great uro/surgeon at the U of Miami if you ever want that 3rd opinion...http://www.umiamihospital.com/PhysRefProfile.asp?guidPhysicianID={4AADCF9F-3868-11D5-81FF-00508B116BA6}
Pat
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11 years 8 months ago #14104 by Rosemary
Yose!!!

As always, it's good to hear from you.

For what it's worth, I had to stop BCG's after #12. Reducing the dosage did NADA for reducing side effects.

It's different for everyone, it seems.

My Doc is comfortable with our decision to discontinue for the time being.

It's good to hear from you.

Your friend,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
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