Dear Patricia, Wendy, Rosemary, Rosie. Dr. S, and all....
I hope this post finds all my old friends well or at least as well as can be expected and then some. I haven’t posted in a while as I wanted to try and think of other things beside BC... When I posted last I had just finished my 11th BCG treatment and had a quite severe reaction with pain, extreme frequency (50-60+ times per day) blood, burning and all the torments associated with a severe BCG reaction. After many different meds and antibiotics but mostly time...about 3 weeks ....I finally got back to some normalcy with the aide of Enablex. Obviously my 12th BCG treatment was cancelled.
I have continued with the Oncovite, selenium, garlic, and pomegranate vitamins and so far no side effects (that I know of). My medical insurer changed and I cannot use my old Florida urologist (who seemed overly anxious to remove my bladder-among other problems) and I got a different urologist that although a much farther drive seems much more positive, professional and knowledgeable and with a cleaner, better run office. He knows I see Dr. Herr in NY but agreed with me (against Dr. Herr) that to wait almost 7 months between scheduled cysto’s at his stage was too long a wait. (59 YO male T1G3 first TURBT 4/20/2007) He did a cysto in his office on 02/15/2008. He said my bladder looked good with no obvious tumors but several red patches and overly vascularized areas that could be the beginnings of a new tumor but were probably something else like a reaction to the BCG or other inflammation or reactions to past TURBT’s. He did a biopsy with a “flexible biopsy grasper” and then fulgurated with a Bugbee electrode “for both hemostasis as well as local control and eradication of the lesion”. I was given the antibiotic pill Levaquin before the procedure as well as a tablet for the next day to “prevent cystoscopy related infection”. The procedure was uncomfortable and somewhat painful but not extremely so and I resumed my normal schedule 2 days later.
The tissue sample was sent to Bostwick Labs and my wife and I met with my Urologist yesterday. THANK GOD good news----the results were negative for carcinoma and the report said “Benign urothelium with reactive changes.” And “Granulomatous cystitus with moderate chronic inflammation.” Anyway it was a big relief! Mentally and physically! (My life has been 98% normal (if you take away the mental stress and worry ) the last 2 months.
My new urologist and I then spoke about continuing BCG after my next cysto (scheduled for 6/2/2008 with the curmudgeon Dr. (I won’t talk to you) Herr at Sloan Memorial Kettering. He said if he were in a room with Dr. Lamb he would loss the argument every time but he wasn’t sure I should try BCG again UNLESS there was a new occurrence which he said he would just “zap” out since it would be very small since I am being monitored every 3 months. AND he said the chance off a reoccurrence was less than 20%!!!! He said with every reoccurrence it just starts the BCG calendar again from the beginning-something I wasn’t aware of—if he is correct. I said I would think about it and make a decision before the scheduled 10% strength BCG after the June 2nd cysto. I sure as hell don’t want to go through what I did after my 11th BCG treatment but I do want every edge in keeping my bladder. I am not sure what I will do now!
Anyway, that’s an update for now-hope it helps someone and if anyone new has any questions for a ten month BC war veteran please see my old posts or let me know. The news recently has been very good1 and I hope all the news for you and your loved ones is as good! I can’t be sure of all the answers but I did stay in a Holiday Inn last night!
Adios for Now
Your BC Buddy ...Yosarian
Experience is the thing you have left when everything else is gone.
I used to be indecisive. Now I'm not sure.
The cost of living hasn't affected its popularity.
How can there be self-help "groups"?
Is it me -- or do buffalo wings taste like chicken?
"The word "genius" isn't applicable in football. A genius is a guy like Norman Einstein." --Joe Theisman, NFL football quarterback & sports analyst.
"Yosarian and The Amazing Technicolor Dreamcoat".......there's definately a musical in there!
Anyway since you were not even recommended to have BCG's by the prolific Dr. Herr it may be a "sign" to quit assulting your bladder? Just a guess.
BC Wars- Part 5 to the tenth power Base 8 Sunday 12-2-07
Merry Festivus All—
And thanks Rosemary, Stephany, Maria, et all for your good humor and kind words, and you too Patricia For the nice way of putting “I told you SO!”—your voice of caution is always welcome...and needed! Thank You.
Anywho---The symptoms did not abate with the Pyridine I was taking and I did call my Uro on Friday morning. I got a call back about 5 PM and told him of the continued pain, burning, frequency, small blood clots and debris, and the 32 pee runs in a twelve hour stretch. He said it sounded like cystitis and gave me a prescription for Cipro..which I got as fast as I could and began taking my about 6 PM. That Friday night was like the previous night- never more than 95 minutes sleep at a time and the symptoms remained until about 11 am Saturday and then seemed to get better. I even went an entire hour without visiting the john (jon?) (how do you spell Jon, John, yvon?) but this new found heavenly bliss only lasted a few hours until I was back on the bathroom treadmill. The frequency, pain, urgency, etc, returned “With a Vengeance” (as Patricia would say) and were actually worse-if possible—(I now wear track shoes to bed). Opps gotta run-I’ll be right back.......ahh the feels better now as well as for about the next 8 minutes...
Anyway, I called my Florida Uro this AM (Sunday) and got a call back and we discussed options. He switched me from the Pyridine (AKA Bright ORANGE Pee) which he said was just an analgesic to Prosed/DS (AKA Bright BLUE Pee) which he said was not only an analgesics but also an anti Spasmodic. And believe you me I’m all for anti Spasmodic and analgesics at this point! He said the Cipro should have been having some effect by now and I reminded him that my first TURBT was delayed because of a UTI and initially treated with Cipro but that they had done a urine culture at the hospital and the type of UTI on the culture was not responsive to Cipro but was to Macrobid-(Nitrofurantoin-Macro) –so he said –okay so let’s give it a try... and I got a prescription for that too!
We also discussed and decided ahhh definitely to at least delay tomorrows third (12th overall) BCG treatment until we see how this works out—be right back---ouch that one really hurt—Anyway—I’m very happy to think that my wounded and very sore appendage won’t be assaulted with a poison carrying catheter tomorrow as scheduled but worried that I may have lost a battle in the BC war......
As always, my best to all the wonderful people on here who do so much for so many so often ............. you know who you are...Thank you!
My wife and I had words,
But I didn't get to use mine.
Do you have trouble making up your mind? Well, yes or no?
Always and never are two words you should always remember never to use.
What if "the hokey pokey" is REALLY what it's all about?
-- Curtis Spencer
I called my Florida Uro on Wednesday AM and got a prescription for Pyridine (Phenazopyridine) . It is supposed to clam your bladder and help with the urgency, pain, frequency etc. All it has done for me so far is turn my urine a very bright orange! The stuff I got in the past (Prosed-DS) turned my Pee Bright Blue...I feel like I ‘m in the movies pissing in technicolor. Anyway 1/4 of my underwear are stained Bright Blue, ¼ are stained Bright Orange, ¼ are stained a live Blue /Orange combo to make a Greenish Hue and the other ¼ I am saving for going to the Doctors office!
If this isn’t better after I get my expected three hours sleep tonight
Yosarian my fellow Floridian friend ......... hang on in there dude.
Don't give up! I have had the bright blue and orange urine after those meds, but they did help me, you are right to speak to your doc if they are not helping you and you will just have to trash the underwear!!
Know what you mean about only 3 hours sleep, me too .......it sucks!!
I think you may have me beat for your count on trips to the toilet. (However, I just typed the first 8 words here and then, had to get up and go!)....
I was on reduced dosage on my last three BCG treatments (10, 11, & 12) and I don't think it made a bit of difference with me as far as side effects. When I told my Dr. that it wasn't making any difference, he said to me, "BCG is going to do what it's going to do." In my case, he was exactly right.
The reduced dosage seems to be the ticket for some folks, but, it just didn't happen for me...
By the way, I get no rest at night either for frequent potty trips. Oh well...
It's good to hear from you. You ain't alone....Please hang in there....
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006