Home Forums All Categories Non Invasive Bladder Cancer BCG Cystitis a.k.a Interstitial Cystitis

  • BCG Cystitis a.k.a Interstitial Cystitis

    Posted by Nix on July 5, 2009 at 1:48 pm

    I am wondering if anyone on the site has had BCG Cystitis. I am going through that now. I am now on Cipro (last 25 days and will continue for another month), and my Uro just added a 5 day pack of steroids.I just started my third day of steroids. I also take Amitripyline at bedtime. Uro moved me up to 50mg. I am now watching my diet – very closely, and of course drinking plenty of water during the day. I have frequency 24/7. I am up 6-8 times during the night. I had my last BCG 5/28 but did not start on the Cipro for two weeks after that. I know it takes a long time to get over this, but should there be improvement along the way? From what I have read, I probably have a moderate rated Cystitis. I had not heard of this before I had it, or maybe I heard about it and did not think it was this extensive. Any information from anyone who has been through this would really help. I have a lot more questions.

    Nix


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
    Nix replied 15 years, 7 months ago 4 Members · 7 Replies
  • 7 Replies
  • nix's avatar

    nix

    Member
    July 6, 2009 at 11:07 pm

    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
  • Shari's avatar

    Shari

    Member
    July 6, 2009 at 10:43 pm

    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

  • nix's avatar

    nix

    Member
    July 6, 2009 at 8:54 pm

    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
  • Shari's avatar

    Shari

    Member
    July 6, 2009 at 3:31 pm

    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: http://www.ichelp.com on the left will be some links, go to living with IC and then diet.
    Hope that helps.
    Tammy

  • nix's avatar

    nix

    Member
    July 5, 2009 at 9:14 pm

    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
  • 's avatar

    Guest
    July 5, 2009 at 6:03 pm

    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?

  • sara.anne's avatar

    sara.anne

    Member
    July 5, 2009 at 4:18 pm

    I am not a uro, but my understanding is that BCG cystitis and interstitial cystitis are two totally different conditions. My first, tentative diagnosis (before the bladder cancer was biopsied) was interstitial cystitis and I did a lot of reading about it. It is a disease unto its own, and they do not know the cause.

    In the midst of my last BCG series, I had burning, urgency, discomfort….and my urologist said that I had BCG-cystitis (a very mild case). It was not treated with antibiotics (I think it is due to irritation of the bladder wall from the BCG and not an infectious agent).
    We delayed the next treatment until it healed….he did say that adding more BCG when the irritation was still there could cause a cystitis that could last a year!
    It is possible that you have IC independently (I hope not). There is a LOT in the web about this condition.

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator

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