And once again thanks for your super replies, info, sage advice, and guidance. You know Rosemary what you said makes sense..common sense (something I seem to lack at the worst of times) in that it wasn’t the volume that was causing me to void but the irritation-- so perhaps some fluids a little sooner might be the way to go.
And Wendy (and Rosemary) you are correct about the 1/3 dose and the difficulty of getting it.
I called my Florida Uro’s office today to ask him about it ,,,,he wasn’t available ,,,and so I left the question with the office staff to forward to him (BIG MISTAKE)
,,,,this was the message ...
“When I spoke with Dr. S. last I was fairly certain he mentioned that for BCG therapy if there were serious side effects that the dosage could be cut and it would be just as effective as the side effects showed it was “working” and that also a reduced dosage was used for maintenance. When I was in for BCG maintenance on Wednesday I received the full original dose and although my side effects weren’t severe and lasted less than 24 hrs I would just like to confirm if I should be getting the full dosage the next two weeks there or a modified dosage? No hurry but I would like to know.....
DUH! What a mistake! I should have just left a message for the Dr. to call me because 10 minutes later I got a call back from the nurse that did my BCG on Wednesday. NOT GOOD- AND I GOT B-SLAPPED!
She first asked me if I didn’t understand her answer Wednesday and I said “No, no, I understood what she said I was just trying to get some clarification.”
She then said the bottles of BCG they ordered came in “ONE STRENGTH and ONE STRENGTH only!” and only in “very special or very severe cases” did they try to alter THE BOTTLES CONTENT!
Next she asked “Did I consider myself a “Very special or very severe” patient?
“Are you side effects that severe?”
I answered “No but I was just checking?” to which she replied
“So if they aren’t that severe do you still want me to ask THE DOCTOR your question?”
I replied, “I was just checking but yes I would like you to ask if you don’t mind”. To which she replied,,,,”All right then I will –have a good weekend –Goodbye “ and rang off.
So much for that –whew touchy, touchy! I’ll let you know what happens. (In case you are wondering I live in Rural Florida and there aren’t tons of great Uro’s all that close) but I do think I now know where Nurse Ratched lives heheheh!
Anyway, Adios from the Cuckoo’s nest! And my best to all the wonderful and kind human souls here....they more than balance the Nurse Ratched’s and Dr. Strangeloves.
P.S. A Hint to anyone about to have BCG .....Note your medical physical conditions ahead of time...
As I said previously, when I was waiting to have my BCG on Wed. I felt tired stiff and achy. Around an hour after my BCG I had a temp of 101-102, and was tired and achy etc and later had the urgency, burning and frequency etc.
To make a long story short, on Thurs I noticed a rash on my inside left side thigh and my left foot slightly red and swollen. This got worse throughout the day and my foot became redder and more swollen and the one inch wide rash on my thigh started extending itself down my leg while the redness and pain in my left foot started traveling up my leg to connect with the other part of the rash. (At first I thought the rash/swelling was from spilled BCG and or BCG urine that leaked) but then I remembered trying on shoes on like Monday BEFORE the BCG and thinking my left foot was slightly swollen.
So I saw my regular family Doctor this AM and told him the entire story and he examined me and listened to the time table. He felt my leg and foot and examined my foot and leg carefully. He asked a few questions and I then remembered that about 10 days ago I had an itch between my fourth and fifth toes and had treated it as athlete’s foot. He examined the area and found a small cut there and told me I probably had a bacterial caused phlebitis that was easily treated with augmentin antibiotics and had nothing to do with the BCG. I am to call him if there is not an improvement in a few days. So I now believe my fever and chills were probably NOT from the BCG.
Hope this helps someone!
Well, everybody is different, but, I'm kinda wondering if it wouldn't be a good idea to drink a little bit after you are in mid BCG treatment, maybe after the first hour? I would think that straight treatment would be a little hard on the bladder without a little something to wash it out...
I usually start flushing with water about one hour into treatment. I guess I'm different, but, I have my normal day before going in for my BCG's meaning that I drink my normal routine stuff, but just less, and I void really good before the treatment, and then of course I am catherized to get all the urine out of me.
There is no way to be an expert and to say what way is best. But this worked okay for me.
BTW, I felt that I had to remind the staff that I was to get a reduced dose (1/3). It seems like some of these details just fall through the cracks when the medical staff is on overload and they are doing something routine.
Sad but true.
I can't say that I have forgotten about bladder cancer, but, it seems to be more on the back burner now than it once did. The fear of cancer doesn't stop me from much anymore, because I've already faced it.
Good to talk to you,
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
Good question about the 1/3 dose thing. It's lowered by the amount of saline diluted with it. I think Lamm's protocol describes it.
You need to get someone who really knows how to lower the dose, and this is usually only done when someone has bad side effects and has trouble.
By the way, I add the AUA's recent guidelines, above this section, to the European ones we already had, they are pretty much the same now. The AUA also recommends maintenance for T1 tumors and CIS, with some stats given. Along with the one dose of Mitomycin post TUR for lower risk tumors, and second TUR for T1. They are almost identical to the EUA's, except EUA recommends blue light cystos.
I am hoping all are doing well and thanks for all the past replies. I hope I didn’t send too many of you on a wild goose chase about “Noroband” as I said I wasn’t sure of the spelling or even pronunciation. My apologies Patricia and Wendy. Perhaps 3 months from now when I visit MSK again I will find out more.
In other news I had my first maintenance treatment this AM (treatment #7) here in Florida. It was a little dicey as the reports from my cystoscope and urine cytology hadn’t arrive at my Fl Uro’s office from Dr. Herr’s office yet. We called Dr. H’s office and apparently they had misplaced our Fl. Doc’s fax # but low and behold it arrived in my mail this AM after I had treatment #7. Anyway that eventually turned out okay.
As I had said before Dr. Herr reluctantly gave his okay for me to have maintenance treatments here in Florida and left the treatment regimen to my Florida Doc and me. We called the Fl. Docs office and confirmed they had the 1/3 BCG dose we thought was recommended and they said yes they had it. (We checked because one other time before the BGC they had was outdated and we had to wait for them to get more.)
Anyway, my appointment was for 10 Am so I didn’t drink and fluids or eat for about 5 hours prior to that –hoping my “empty bladder” would be more able to hold the BCG treatment for the full 2hours or more. (In the past each sequential BCG treatment was more and more difficult to hold for extended times (i.e. 2 and hopefully more hours).
I didn’t feel very well this morning (tried and achy and perhaps mildly feverish) but I certainly didn’t wish to miss the first maintenance treatment my wife and I had worked so hard to get. I waited in the outer office and about 10:40 I got called to the examination /treatment room. I confirmed with the nurse who was doing the procedure that this was maintenance BGC and she said yes “maintenance” for your 7th treatment. I got up on the table and sat on the paper covering. (that is now switched to advertising Cialis as opposed to Viagra from last time). Anyway after the disrobing routine I got my lido cane insertion and then she (the nurse who was doing the procedure) said she would leave me for a few minutes for the Lido to work. She also applied a very small amount of Beta dine around just the very end (unlike the bath at MSK) but better safe than sorry and I wish Fl would use more -YES next time I will say something.)
Anyway about 10 minutes later she came back with the BCG plastic bottle and started inserting the coude catheter in me and by 10:53 she started draining the BCG into me. As this was happening I asked her “I am curious, I know that maintenance BGC is 1/3 the normal dose but is that by concentration or volume or some other measure?” To my great surprise she said this was the exact same thing I got for the first 6 treatments and the confusion with the “1/3 dose” was because for this maintenance treatment you only had it for 3 weeks instead of 6. I didn’t say the math didn’t make sense but looked at my watch and saw the last drop drained into me by 10:57. She left and I got dressed and went home.
I lay down on the carpet at home and did my 15 minute turn rotation as instructed (back, side, belly, other side).. I was very thirsty but did not want to risk drinking anything for fear of having to urinate before two hours. By about noon I felt very stiff and achy and my temperature was 101 then 20 minutes later 102. I began to shiver but didn’t want to take aspirin as I didn’t want to drink and liquids.
To make a long story short I felt pretty bad and finally at 1PM (2hrs and 2 mins after BCG insertion) I ran to the bathroom and urinated a very small amount but it did burn! ( On an aside--I think the 2 hour thing is very much psychological in my mind and if it was two and half hours I could probably make it but I’m not sure)
Anyway I sat outside in the Florida sun and 95 degree temperature and finally stopped shivering. I took three Tylenols and drank copious amounts of H20, cranberry juice , pomegranate juice, green tea (and a cup of coffee in case it was caffeine withdrawal-yes I do drink one or two cups a day max ). It was like a miracle....after ½ hour I felt so much better and my temp was down to around 99.6. (it‘s back up to 100.2 now (3:22 PM) but I still am better by 50% from my shivering times!
I am not sure if the BCG had anything to do with how I felt as I felt poorly before it.
I do know now that it does burn to urinate and I have a frequency and urgency and just writing this made me run to the loo. I do appear to have a small amount of blood in my urine.
So that’s it up till now and I have a few questions if anyone knows the answers it would be deeply appreciated.
1) Do most, all, many, a few, Dr.’s use full strength (same as initial induction) BCG for maintenance BCG...I know Dr. Lamm says 1/3 dose (and what does that mean strength or volume etc?).
2) On another front-- Has anybody developed any methods (mental or otherwise) to increase the amount of time BC isn’t always on your mind? Does it get better with time? I don’t want to do any drugs (Prozac type etc.) but some nights I just can’t stop worrying (and days too) I feel like a woos! But any ideas would be appreciated
That all sounds like some real progess being made Yos, congrats and keep us posted.
I will check out what NOROBAND might be. Sounds like you were taken quite seriously in the end. Good.
BTW, I found out about another new diagnostic technique, discovered in Russia and being developed by Imalux.com, available at a few top centers in the US (Cleveland Clinic, Mass Gen, MDAnderson) and now beginning trials in Europe with 26,000pts being accrued, it's a special scope that sees more than a regular one, no dye used: (you can google it with the term 'optical coherence tomography bladder')