Thanks Rosie for the compliment as well as the good advice! I surly hope someone can benefit from reading my experiences as I have benefited from reading the experiences of so many others on this forum.
BTW-The mild fever and flu like symptoms persisted longer this time than ever before .... perhaps it’s working –who knows but hope floats!
Yosarian, I know you are doing many a great service by detailing your BCG experience. When I was about to get BCG treatments, I went on line trying to find some details as what to expect and, hints that would best prepare me to offset any problems. In an earlier post to you I told you of the "bad nurse" and "good nurse" who inserted my cathetar for BCG and what a difference it made in comfort or pain level. I have identified those docs/nurses that are skillful by refusing to accept those that were not. I spoke right up and said "no" he/she causes me too much pain - NEXT. Just as there are some nurses very skillful at taking blood from my arm without pain, there are others who have to stick me over and over and cause my arm to turn black and blue. I now always go to my lab tech at my PC's office for any pre-op tests needed and for blood and urine check ups. Tell the urologist to pretend he is the one laying there, vulnerable, exposed and waiting to be treated skillfully - not hung up to dry with a clothespin. Rosie :-*
BC wars in Florida –Part Trois-3rd and hopefully last Maintenance Treatment for now........
Hello Friends, pals, buddies, strangers, and fellow BC warriors...
Just an update on my 9th BCG Treatment (3rd Maintenance treatment-last one for now--hopefully).
I arrived at my Fl. urologist office at 10:30 for my 10:30 appt. and got to the inner sanctum at about 10:50 –not bad! I gave the nurse my urine sample and was told to do the usually strip and cover yourself with the sheet like paper drape. A few minutes later I got the report that I still had a slightly elevated white blood count and she was going to speak with the Dr. She also asked about my side effects from the last BCG and I told her.
A few minutes later my Florida Urologist came in and we actually spoke for a few minutes. He asked about my side effects and told me they could cut the dosage but for the side effects I was having ...Low fever, chills, burning, blood, tissue debris, frequency, and urgency that that was what was supposed to happen so for someone my age and shape. He then said he would recommend to continue with the full strength shot of BCG. He asked what type of routine I wanted to follow and I said probably Dr. Lamm’s routine and he said he had heard a great deal about Dr. Lamm and respected him.
Next he started talking about if the BCG doesn’t work (re- occurrence?), He said that although the present literature for a T1G3 is going back and forth between early Bladder re –re –re ...(I can’t say it) and other maintenance regimens that the literature is now shifting towards early re-re-re ...., I just gulped. I told him I had an appointment in NYC in mid Nov. for a cystoscopy and he seemed fine with that as long as he got the reports.
So the nurse comes in and injects the lidocaine and I think she is going to bring out Torquemada’s vice grip clothes pin like device as she did last time--- but instead she just left before I could say anything! So I quickly used my thumb and forefinger to keep the lidocaine from leaking out. This worked –but perhaps too well! As it turns out she did not come back for sometime so the lidocaince had a chance to work and I was getting nice and numb.
So she next started inserting the catheter but apparently was having some difficulty. I can usually tell where it is but this time I was numb and I couldn’t say for sure ... but I think she had reached my bladder. But apparently the way they know they have reached the bladder is when some urine comes out of the catheter. Apparently, the lidocaine and lubricant had blocked the holes in the end of the catheter. So the nurse got the Dr. to come back in and he hooked up a large turkey baster sized syringe looking thing to the catheter and pushed it some liquid (saline???) in to clear the openings –at least which is what I surmise as I think he told the nurse he was aspirating the catheter.
Anyway, that seemed to work and the nurse hooked up the BCG bottle and drained (pushed) it into me and I was done by 11:19 am.
I knew immediately I was going to have trouble holding this BCG dose in for the full two hours as I felt the burning need to go as soon as I walked the out of the office door. I was only able to hold it for about an hour but tried with great difficulty and pain to not void all of the solution ---which I think I did. The next hour was very painful trying to hold it in and twice more I did small partial voids. At the 2 hour mark I just gave in and tried to empty my bladder completely. I voided a small amount as well as some urine and what appeared to be blood coated tissue debris,
Over the next few hours I developed a mild temperature (about 100), some chills (which were helped by going out into the 92 Florida weather with a sweater and hat!) I took some aspirin and it worked like a miracle and as of now 5:34 PM I just have the burning and some urgency and frequency and mild flu like symptoms...and some tiredness and a low fever. I am somewhat surprised though that I have drank so many large glasses of water, green tea, pomegranate juice, cranberry juice and more water (probably 10 or more large -16 oz glasses ) and I have urinated so little –at least comparatively.
So that’s the tale so far of BCG treatment number 9 –I hope it can help some future reader in knowing perhaps what to expect or what ever---it did help me to write it . And I was so happy I didn’t have the clothes pin “Jaws of Death” on me but as said previously by Dr. Warren I think if applied correctly with the right tension it might be okay... but not one size fits all –the thumb and forefinger work better.
Well fellow BC battlers and those who know love or care for them –Thanks for lending me your ear....I wish you all the very best possible results!
Furthermore, All those who believe in psychokinesis raise my hand.
Doc....Methinks I hope you are correct in that it’s the executioner and not the execution that causes the pain ...although I don’t ever think I will get used to the idea of the “Penis Clamp” even if it does work!
Anyway, I am sure you are correct about giving the lidocaine gel a little time to work first. I will try and check on that tomorrow to see if it can have some time to work before I get my third (and last for now I hope) installment of maintenance BGC. I will also ask if perhaps the clamp has different settings or comes in different sizes or grips or tensions or something –I believe last time I got the one nicknamed “The Python” but I’m not sure. I also think it didn’t work last week and the catheter insertion was so painful because most of the Lidocaine had already dripped out before the clamp was ah clamped on!
And ahh “Nurse Mildred” I will try and ask again tomorrow about a reduced dosage but I don’t hold out much hope.....and please Patricia,,, never go under the rock...it’s worse than the ah “CLAMP”! and your advice and wisdom are much too valuable!
Anyway, thanks to both of you for the advice and I wish you all (and all on here) the best of health possible.
Cross country skiing is great if you live in a small country.
Is it just me or am i the only worried about Yosarian getting full dosage BCG instead of the maintenance doseage which is l/3 of the full dosage? If so i shall go back under my rock.
Boy medical technology certainly has progressed when you get a clothes pin on your penis!.....What can i say..........Ok i'm going!!!!
BC adventures in Florida Part Deux-B
Well Nurse Ratchet came in again and injected the lidocane and for the first time out of nowhere put this wire clothespin like device on me to hold in the Lidocane. I think the origin of the device was during the inquisition as it had “Made expressly for Tomás de Torquemada” engraved on its side. Anyway it hurt worse than any pain it could have prevented
Methinks the problem lies with Nurse Ratchet and not the device. My twin had a cysto after my diagnosis and he said the only thing that hurt was the "clothes-pin" on his penis. Well my urologist never used any device, but then he never left the lidaocaine gel in to work either. He just injected it and plowed in with his instruments (which included the devices for dilating my urethral stricture).
The thing is, the lidocaine needs some time to work, and the device is used to keep the lidocaine from dripping out. My new urologist used one on me, and it didn't hurt a bit. Perhaps he knows how to apply it tight enough to hold the lidocaine without strangling or pinching the organ. For the first time in 6¾ years my penis actually felt a little numb before the procedure began... and it still hurt like hell, so imagine if the lidocaine hadn't been given time to work or had leaked out!
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...