BCG

[Don]

Diane is the BCG still working for you ? and what are your thoughs on it . thank you Don

[Nancy B]

Hi Don,

I am not Diane but had BCG earlier this year. I am great. Little to no symptoms anymore. So it worked for me!

Nancy Baker

[christina]

Don, is BCG available anywhere here in Utah?

Let me know
thanks,
christina

[ICNAsstMgrDiane]

I am still doing great on the BCG. I am only voiding about 6-8 times a day. I have no bladder pressure and the IC symptoms are gone.

I only wish that there was something that I could do for the nerve damage. If I could get the nerves to heal than I wouldn't even know that I had any parts down there. (nerve damage is not from BCG, but caused from massive infections)

BCG is available in the US and abroad. It is not approved for IC yet, but in clinical trials it has a 60+ success rate. Many doctors are using this as a treatment option because of the success they have had with it.

Diane

[LM]

Well, I guess no one had a thought on my question on the BCG. I'll bring it up to my uro, I guess. I wanted to ask you Nancy, how soon after treatment did you start to feel better? I thought i remembered you saying it was during the treatment...,but i thought it takes several months to do anything, so i was just wondering about that. Did your uro have an explanation of this? What does he typically see in his practice? Thanks, L

[Don]

My uro said he would do it for me , and then try to bill the insurance, also he said he would do it at his cost, I think he wants to see if it helps me then use it on other patients. Would be a trial for me and him. thanks Diane and all the rest of you, Christina, your uro can do it , but its getting insur. to pay.

[Don]

Nancy thanks for the information, glad you and Diane are doing so good. Don

[Nancy B]

Originally posted by LM:
Well, I guess no one had a thought on my question on the BCG. I'll bring it up to my uro, I guess. I wanted to ask you Nancy, how soon after treatment did you start to feel better? I thought i remembered you saying it was during the treatment...,but i thought it takes several months to do anything, so i was just wondering about that. Did your uro have an explanation of this? What does he typically see in his practice? Thanks, L

Hi LM,

Sorry it took so long to answer. Guess I got busy! My initial relief in urgency and frequency I think came from my TENS unit. That helped calm things down from the outside. All of a sudden, after about 3 months, there was an even bigger improvement. I am now about 4 1/2 months post BCG and I don't feel a thing wrong. It is scary to say. Even coffee does not bother me. Every once in a while I feel a twinge but that is it. The other day I went 8 hours without peeing. I kept checking my watch and waiting for some sort of urge. I was out at a concert and wondered if I would need to find the ladies room when I got there. No. During intermission. No. Go at my friend's house when dropped off at my car. No. I am thankful about how well I did. I now just do everything to keep the remission there. For me it is stress management. Big time.

By the way, my uro said that I may begin to feel some during but the big changes are after (3-6 months).

Good luck,

Nancy Baker

[Nancy B]

Originally posted by Don:
My uro said he would do it for me , and then try to bill the insurance, also he said he would do it at his cost, I think he wants to see if it helps me then use it on other patients. Would be a trial for me and him. thanks Diane and all the rest of you, Christina, your uro can do it , but its getting insur. to pay.

My insurance did pay. My uro said the same, not to worry. And he said he would write if there was a problem. A funny funny thing--at first they did not pay for the catheter to instill the BCG. Ok, I just had to call them on it. The caths were only $2 but I thought, man, it IS a medical necessity. How else are they going to instill it? With a straw?? LOL. Anyway, we had a good laugh, the insurance company put me on hold and called the hospital up to confirm this (like as if I didn't know!!). They did pay.

Nancy Baker

[Don]

Nancy, love your straw answer and your sense of humor. Right now I don't have insurance but in FEB. I get medacare so will wait till then, maybe they will pay. thanks again for the humor. Don