May stop all BCG\'s.

I am brand new here and glad I found this forum...

Bill, I am also one of the pathetic few who have horrific side effects from bcg. Your symptoms sound just like what I am experiencing right now.

First surgery was Feb '09 followed closely by 6 weeks of bcg. It was a tough summer (had to stand while driving the boat!). I always thought it was the surgery that caused my discomfort that summer but now I'm thinking it might have been the bcg.

All the 3 month cystos checked out ok but my uro would keep saying he was keeping an eye on one spot... see ya in 3 months.
After the last cysto (6 months after that I was hoping) he decided to biopsy that spot and results indicated more surgery, which occurred on 3/1/11. Two weeks later bcg's began. This time the bcg's were administered by others in the same group and after asking the previous practitioner, I convinced her to use a #12 instead of #16 cath as the first two appts. were brutal getting past the prostate.

The 12 cath was much better but the side effects this time are just like Bill's, lots of spasms and bleeding (I don't remember major bleeding issues 2 years ago). This thread has really got me thinking, I wasn't aware, for instance of different bcg doses and that's just one of the many questions I will ask as a result of visiting this forum.

mmc wrote:
When I had my TUR, the Uro did perform a slice biopsy of my prostate (at least he said he did) and told me once I healed, that I should see an improvement in symptoms from BPH. I did for about 2-months. Now, its near impossible to get a #14-cathe thru to my bladder. They will not use a smaller, as they say it interfers with the admin of the BCG.

Anyway, to day I had my yearly with my GP. The Uro had not notified him of my cancer. Anyway, he did an in-office "urine" test, which indicated a infection. He is going to "culture it" and let me know if anything turns up.

Also, my wife (OR-Mgr) crossed paths with my Uro and he finally sent me an antibiotic to take 2/day for 14-days.

Two BCG schedules ( first 6 and first 3) and a World-Class infection after each.

Again folks, my quality of life w/BCG is horrible and the recovery between is Long & Drawn-out, therefore, I am still not sure I will continue in Jan, although I will continue the Cysto's every 3-months.

And yes, I will look for a BCG specialist in Roanoke, VA and in Charlottsville, VA (UVA).

Thanks for all the advice, as I do read and study all of it.

Bill,

Sure sounds like enough crap going on that you should STRONGLY consider going someplace better. I know you mentioned politics of the doctors and your family but it is worth it?

Sure doesn't sound like it to me. Also seems like if a family member is a doctor that they would advise you to do the same thing we keep advising. Also seems like they should be able to handle themselves in a situation where crappy doctors try to cause an issue over you getting better medical treatment.

If it is a prostate infection, you should ask about Levaquin for a 30 day dose. It takes a LONG time of antibiotics to get rid of a prostate infection.

If the prostate still causes issues with the catheter, then inquire about getting a TUIP. They make an incision in the prostate to loosen it up in the area of you urethra. It's a pretty common surgery for enlarged prostate, which may be a contributing factor in addition to the infection.

You REALLY, REALLY, REALLY want to continue the BCG if at all possible. While I've got a neobladder and am doing fine with it, I can tell you without a doubt that I would have rather been able to take the BCG treatments and still have a bladder.

Finally, you can even go down to a 1/10th dose. Dr. Lamm says there is no evidence of reduced efficacy even with that dose. Send him a note to ask on his web site.

All we can do is advise based on what we know. It's your decision to make.

I do wish you the best though!
Mike

Dear Bill, Our mutual friends, Donna & Bruce, think the world of you, and goodness knows, when I get a chance to return to my home state and visit, I want to meet you and find you healthy and strong.

Sooooooooooooooooooo, PLEASE, PLEASE, PLEASE, get an appt. with a most excellent uro. at a medical establishment that excels in handling BC situations. I believe Pat gave you a list earlier on....if not, I'm sure she would be pleased to do so now.

Anyone who doesn't return urgent phone calls, and in my mind, intense pain is an urgent concern, is either too busy or just unprofessional....either way, you don't want to deal with that type of medical office. No! No! No! ABSOLUTELY NOT! Yes, I recall you are related to two medical professionals but that doesn't mean everyone else there is anywhere as good as what you now need in the way of treatment.

Sorry if I am coming on a bit srong here but this is YOUR LIFE we are talking about here. YOU are a special person who needs some very special attention and care and I don't see it happening. I'll be very frank with you and tell you that we have lost folks on this forum who did not take our comments seriously enough. It always disturbs me when I feel like our warnings are not taken to heart. We care greatly about what happens to our friends on this forum. Please reconsider going out of town, and maybe even going out of state if necessary. You continue to be in my prayers. I'll pray God gives you the warrior attitude cause you need to get tough with the medical profession!

Yes, I'm scolding you and hugging you, all at the same time.

Oh Bill, so sorry! But I think you need to look for a Uro in the NEXT town. You need to trust that your health care providers will be there for you when you need them, not three days later when they decide to return messages. I think it would make the whole experience more tolerable. Best of luck to you. (I have my 2nd BCG treatment tomorrow, and had much better luck than you with it)...

Lauren