Worried...

Hi all!

We've convinced him of drinking less coffee! but we now have a greater problem.

My father seems to go back to bleeding after every BCG instillation. I wonder if this is normal?

We fear the amount of scaring is so large, he may be getting scratched with the carather every time (especially around the prostatic urethra).

In regards to supplements, he's now taking all the Oncovite vitamins (except the Bs that the doctor advised against). We plan to start with Oncovite after the 1st 6 instillations of BCG. (By the way, the shipping price for Spain is abusive! 21 dollars per unit no matter how many units you buy plus the product price!!)

Best wishes to everyone,

Gabriel

Here's a study I haven't seen before. Coffee PROTECTS agains bladder cancer?????

Can coffee protect smokers against bladder cancer?

archives.cnn.com/2000/HEALTH/cancer/12/13/coffee.smoking/

Gabriel, When my husband was diagnosed with Bladder Cancer his urologist told him to stop drinking coffee and to not eat or drink anything with caffeine in it. This was difficult as he drank a large amount of coffee every day. He switched to roasted barley drinks Pero and Roma are two brands that are from Switzerland. I don't know why the Dr. told him to stop caffeine. I would be interested to know if anyone else has gotten this advice. Julie

Gabriel,

I assume that Nescafe is much like regular coffee? I hope no one asks me to stop drinking coffee. When I asked my Urologist if coffee caused bladder cancer his answer was, "I hope not". To be honest, I'm not sure anyone really knows if coffee is harmful to the bladder. At one time I used to hear that it was harmful, but I think that researchers have since reversed that decision. Like I said, I hope that no one tells me that I have to stop my coffee...

I took Garlic and a similar supplement to Oncovite while taking BCG's. I also drank plenty of good water to flush the bladder out really good.

I don't think that it really matters that much that he couldn't hold the BCG for the full two hours. I've read in several places by researchers on the net that it isn't that big of a deal if you can't hold it for 2. It might help though, if he doesn't drink a lot before his treatment. I usually hold off from drinking liquids before treatment and then start drinking pure water about the one hour mark to start flushing out.

His symptoms sound pretty normal to me. Watch out for fever and chills, though.

Best of luck,
Rosemary

Hi All

I'm now in the Canaries with my family. After one day here, many of the feelings I've had during the past months have fortunately shifted for the good.

Some news:

- The doctor says that approximately six weeks after BCG my father will have a 2nd cystoscopy + TURB. He said: "I'll just be looking to cut any residues I find whilst I explore."

- My father is reacting mildly to BCG. Some bone aches, he had fever with shivers one night and discomfort around the area plus nausea and sudden bursts of tiredness.

Today was his 2nd. inst. and couldn´t hold it for 2 hours... (he could only do it for 1 hour and a half). Is this a big issue?

We've got a few question marks in the family:

1. Should he stop drinking Nescafe (a horrible instant coffee that is very popular in Europe and Latin America) and which the doctor has advised against. He's very fond of it for he's been drinking it for over 30 years!

2. Can you recommend any reading materials on BCG? He's specially interested in learning more about side effects and how to cope with them. Also, on any tips to make the treatment most effective.

As always many thanks and much love to all,

Gabriel

Gabriel,

It seems that every Urologist follows his own protocol for his own reasons.
I had a 2nd TURB about 6 weeks after my first TURB (and before treatment) so that my Urologist could check for "residual tumor". My doctor said that "its very hard to get it all." He also had trouble getting enough muscle specimen (after 2 biopsies) because he said he was "afraid of puncturing the bladder." I actually had to go for a third biopsy by a more agressive Urological Surgeon to get enough muscle tissue for a biopsy. The 2nd surgeon said to me, "So, you puncture the bladder, it happens." After all that I began treatment for my T1 G3 disease 5 months after diagnosis.

I get the feeling that you are not all that happy with the care that your father is receiving.

You are right to educate yourself.

Very best,
Rosemary