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BCG Cystitis a.k.a Interstitial Cystitis

9 years 5 months ago #26682 by Nix
I have already had 23 BCG Treatments. I haven't had a re-occurance in 18 months. I am hoping the BCG worked on the CIS. My Uro said he doesn't want to do any more any more BCG because of my last reaction. I am going to Moffitt Cancer Center (it is close to me) Aug 7th for a second opinion and a possibility of changing doctors.
From your writing, it sounds like you are doing well after your surgery? I bet you are happy to have that behind you.
Just continue to heal, and wishing you many happy years.

Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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9 years 5 months ago #26680 by Shari
Yes, I used the prelief, also pyridium, baking soda - by mouth to alkalize and in bath water to draw out toxins (helps with burning).

I did six once a week BCG treatments, half strength after second treatment.3 months later there were three more papillary tumors, had them removed, started another round of BCG but with the IC could not hold it in, first one in about 45 minutes, second one I lost right at the hospital, so I quit. Did fine for 1 1/2 years then another papillary with CIS at base. Removed but a year latter CIS returned, had my bladder removed and an Indiana Pouch 8 weeks ago. CIS is nothing to mess around with so please be careful. I had three "clear" cystos one only a month before being sent to a uro/oncologist because my symptoms were so severe. My uro and I thought it was the IC but uro/onc did another cysto and said it was CIS (they do look the similar)and recommened removing my bladder. Thankfully I listened to him because my bladder was full of cancer.

Hopefully the BCG cystitis will heal and you can finish your treatments and they will work for you.

Take care,
Tammy

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9 years 5 months ago #26679 by Nix
OUCH:woohoo: I can't imagine how painful BCG would be with IC. I did not even know this IC existed until I did research on BCG Cystitis. What a terrible desease IC is. I have followed the diet for three days now, and I have seen improvement. It could be the sterods however, I think it is the diet and steroids. Today I purchased Prelief - Have you tried that?
So, did you do an entire wk course of BCG or are they trying another approach?

Thanks for the info

Best of luck to you:)

Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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9 years 5 months ago #26675 by Shari
I have/had interstitial cystitis (IC) and bladder cancer (RC May 09). BCG was a nightmare for me because of the IC. Diet effects the bladder in a big way with any cystitis. My suggestion would be to go on an IC diet until your bladder feels better. Here is a very good site for info: www.ichelp.com on the left will be some links, go to living with IC and then diet.
Hope that helps.
Tammy

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9 years 5 months ago #26660 by Nix
Patricia,
I did email Dr Lamm, and here is his response:

Nancy,

It sounds very much like you have BCG cystitis. It is typical not to be
able to culture the organism. We treat based on the temporal relationship.
I treat such patients with a fluoroquinolone such as Cipr0 500mg twice
daily. You can also use, with perhaps more efficacy, Ofloxacin 200mg twice
a day. We add isoniazid 300mg/day. Treatment response is slow and you
likely will need to be on double (or triple) antibiotics for at least 3
months. Prednisone is sometimes needed to speed the response.
It should respond, but it does take a long time.
Best regards,
Don Lamm, MD

So I took this to my Uro and I am doing all that he suggested. I know it takes a long time, I am hoping to see what other patients have done for their BCG Cystitis. I am now watching my diet as UT Patients do, because if my bladder is inflamed diet would help make a difference?
I am improving in baby steps, but it is always helpful to read what others have done.

Nix

Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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9 years 5 months ago - 9 years 5 months ago #26659 by Patricia
WEll here's a new one
http://www.oncolink.com/resources/article.cfm?c=3&s=8&ss=23&id=15621&month=09&year=2008
I think you should see an infectious disease specialist. I know others who have had these complications have.. hope they chime in
Pat
P.S. maybe email Dr. Lamm?

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