Worried...

Hey Gabriel,

Well, all around, I'd say that things sound pretty good for your Dad. Since I live in the US, I am not so well versed in European protocol for Bladder Cancer. I can only sort of make a comparison of experiences.

My own Doc had his own pace for scheduling a cystoscopy after the initial 6 BCG's. All that I seem to remember is that the cystoscopy took place some time after the 6th BCG instillation but before the 3 month interval that began the Maintenance BCG regimen. I did not have a Urogram after BCG treatment.

Also, I just don't have any research information for how long one should continue with the Oncovite after the cessation of BCG treatments. At my personal choice, I continuted my similar supplement for about a year and a half after my diagnosis. I didn't see how it could hurt anything, but I don't have a standard answer. I tried to search the Dr. Lamm site but couldn't find a standard answer there either.

www.bcgoncology.com/treatment/vitamins.html

From the tone of your post, I should say "so far, so good". Once again, I feel that your father is very lucky to have you fighting in his corner.

Best regards,
Rosemary

Hi everyone!

My father has now finished BCG.

Surprisingly, one week before his last instillation, a 3-dimensional scan (urogram) was performed. It showed he was clean.

From the literature that I've read and what I've read in this forum, scans during BCG are not very useful due to the inflammation of the bladder. Am I wrong?

Doctors are now going to wait to perform a cystoscopy but we don't know when. When should it be?

One last question: until when should he be taking Oncovite?

Love to all!

Gabriel

Thank you all for your responses.

My father is now following the BCG maintenance schedule finding bladder spasms more bothersome and having fever with every installment.

He is taking something similar to Urelle and slowly giving up coffee.

Our biggest concern is the doctor still not testing urine for bacteria...

Last week another doctor gave him antibiotics!

Everything seems a bit loose at the moment and he's being told he'll have a second TURB instead of a cystoscopy!
They said "we'll take a look and if we find tumours, we'll take advantage of the opportunity to remove them".

I'll let you know what happens. Love

Gabriel

Hi Gabriel.......just wanted you to know that your fathers refusal to give up coffee could be a problem.......Drug Interactions
Quinolones, including norfloxacin, have been shown in vitro to inhibit CYP1A2. Concomitant use with drugs metabolized by CYP1A2 (e.g., caffeine, clozapine, ropinirole, tacrine, theophylline, tizanidine) may result in increased substrate drug concentrations when given in usual doses. Patients taking any of these drugs concomitantly with norfloxacin should be carefully monitored
Also with this drug its important that you do not give vitamins at the same time...2 hours before a meal or 2 hours after a meal ok......and lots of fluids..not coffee...should be given.............Pat

Gabriel,

People seem to have different tolerance levels for the accompanying pain and bleeding associated with BCG treatments. As someone who has been there, I can tell you that the treatments can get pretty rough.

I wouldn't exactly say that I'm concerned, but, I will say that I am surprised that your father is not being required to give a urine sample on the day of treatment in order to test for bacteria in the urine.

The only other thing that you might mention tomorrow is about the spasms. Bladder spasms on top of burning and bleeding must be pretty awful.

I hope he feels better soon.

Best regards,
Rosemary

Gabriel,

If your father is having bladder spasms, you may want to ask his Dr about "Urelle". It is a bladder antiseptic taken orally, it also reduces the spasms.

I don't know if it can be use in conjunction with his treatment but it worth asking about.

My Best to you & yours,
Karen