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  • 10% BCG Effective?

    Posted by Nix on May 16, 2009 at 1:47 pm

    Hi, I had my 23rd BCG yesterday. The last several, I seemed to have more and more reaction.(which I expected) My 1 – 19th instillation was 100%. After a very slow recovery (spasms, and I believe inflammation) the last of that maintenance was reduced to 50% at the end of December. I actually had to wait three weeks because of the reaction. I never have bleeding or any of the other awful side effects that I have read about. When I started this latest maintenance my Uro reduced 17%. I was in bed for 2 1/2 days. The spasms and pressure were terrible. Yesterday my Uro reduced the BCG to 10%. I had some spasms and some inflammation, however today I feel normal. Is reducing the BCG still effective? Are all the side effects show my bladder is fighting the cancer? I have been clear for 18 months and I don’t want to jeopardize my record so far. I am considering going back to 17% for my last maintenance this round – but of course, I don’t really want to be miserable if I don’t have to:side:

    Nix


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
    Nix replied 15 years, 8 months ago 7 Members · 18 Replies
  • 18 Replies
  • nix's avatar

    nix

    Member
    May 24, 2009 at 6:29 pm

    Thank you, I will try ditropan. I have tried other spasm meds but they don’t seem to work too well. I have always had spasms, but during my last two maintenance rounds, I also get a LOT of pressure, which takes several days to go away. My best guess is that my bladder is so sensitive t0 BCG after 24 doses, it is very inflamed and takes time to heal. I do take advil (which does help somewhat)When I have my next Cysto July 13th, my bladder wall will still be very red.
    I even had two red small areas 6 months after the last round. It is uncharted area how anyone will react with each treatment.

    Nix


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • 's avatar

    Guest
    May 24, 2009 at 4:29 pm

    Regarding your spasms. At the beginning of my second set of treatments in Feb the spasms were so bad I was in the bathroom all day and consequently didn’t drink enough water. My uro wasn’t available so an associate prescribed Ditropan. I took it all week and did much better after my next treatment. My uro said he didn’t like this type of medication because the bladder doesn’t empty fully.
    My solution was to take one the night before a treatment and 3 the day of the treatment. I’m pretty sure that’s why I was usually able to hold in most instances for 12-15 minutes between trips to the bathroom. You might ask your Dr. about this. I had hoped to put in a link but guess I need to be educated. At any rate you can copy and paste the url.
    http://www.drugs.com/pro/ditropan.html
    Hope this helps.

  • alsimons's avatar

    alsimons

    Member
    May 21, 2009 at 11:33 am

    Look forward to hearing a good report. Can’t do a happy dance but I’ll smile and feel good for you.

    Al

  • moonerj's avatar

    moonerj

    Member
    May 20, 2009 at 11:56 pm

    Thanks Al. My next Cysto is in July.
    Hoping for another clear.
    Jack


    TA Grade 1
    3 Turbts
    30 BCG Treatments
    Cancer Free since Nov 2007
  • alsimons's avatar

    alsimons

    Member
    May 20, 2009 at 11:51 pm

    Sorry but I forgot to say congrats on 16 months I really hate to be rude and this site is about us….not just me.

    Thanks again

    Al

  • alsimons's avatar

    alsimons

    Member
    May 20, 2009 at 11:48 pm

    Thanks

    I also am ta t1 and this is my history

    one tumor size of 2 golf balls TURBT

    Pathology Report 2005 Bladder Tumor: Papillary Urothelial Carcinoma High Grade. Neither Lamina Propria nor Smooth Muscle Invasion are Identified.

    45-50 tumors as stated by doc TURBT

    Pathology Report 2008 Bladder Tumor: 1. High Grade Papillary Urothelial Carcinoma. No Lamina Propria Invasion Identified. Muscularis Propria is Present and is Negative for Tumor. 2. Bladder Neck Tissue, Biopsy; High Grade Papillary Urothelial Carcinoma With Underlying Prostatic Tissue, No Lamina Propria Invasion Identified.

    2009 MD Anderson recommended RC

    Febuary 7 more tumors identified TURBT (don’t have the offical pathology report in front of me)

    Pathology Report low grade

    March 2009 poke and peek biopsy taken negative (scar tissue fired Doc)

    April 2009 poke and peek 2 more tumors and RX of crippled bladder

    Agreed to try BCG with inferon before confirming RC. Very worried about cronic UTIs so it was worth the shot.

    Thats why I was concerned about BCG and ta

    Take 3rd treatment April 29th

    Thanks

    Al

  • moonerj's avatar

    moonerj

    Member
    May 20, 2009 at 7:26 pm

    Hi Al

    I had TA Grade 1 Tumors.
    My History:
    Turbt followed by 6 BCG Weekly
    Turbt TA GR 1 found, followed by 6 BCG Weekly
    Turbt TA Gr 1 found, followed by 6 BCG Weekly
    Cysto Clear, followed by 12 monthly maintenance BCG
    Have had 5 Clear Cystos now.
    Now cancer free 17 months.

    So it took a while for the BCG to work for me.


    TA Grade 1
    3 Turbts
    30 BCG Treatments
    Cancer Free since Nov 2007
  • nix's avatar

    nix

    Member
    May 20, 2009 at 6:37 pm

    I should have said it wasn’t effect for my Ta – since I had a re-occurrence 6 months after the series of 6 BCG. My Uro said BCG is usually effective with CIS.
    Plus the fact I am on maintenance for the last 18 months, I haven’t had my Ta or CIS return……………..yet.

    Nix


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • alsimons's avatar

    alsimons

    Member
    May 20, 2009 at 4:17 pm

    Now I am more confused than ever. Why isn’t BGC affective for ta?

    Al

  • nix's avatar

    nix

    Member
    May 19, 2009 at 4:52 pm

    What I would love to hear is “This will ‘cure’ your bladder” – but that will never happen. A couple of years ago, I asked on this Forum if any one had CIS and followed all the BCG maintenance had long lasting results, and nobody answered. So maybe if you are on l year check-ups and had great results, you really don’t read this site? It does seem most people that post are going thru the treatment right now.
    Right now my Uro says, everything is going as well as it can. No re-occurrence in 18 months.
    As I am sure as everyone does, I do the Happy Dance for a while, then start to worry before my next cysto.
    It is great having this forum and knowing I’m not the only person going thru this:-)

    Nix


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • joey's avatar

    joey

    Member
    May 19, 2009 at 4:42 pm

    We are following the same paths. Does your doctor feel positive that you can keep this at bay for a while without rec/progression?

    Joey

  • nix's avatar

    nix

    Member
    May 19, 2009 at 4:28 pm

    Joey,
    I had series of 6 when first dx’d in 06 with just Ta. Then 6 months later I had CIS. Since BCG is not effective for Ta, my Uro thought we would try another round of BCG for the CIS – once again first series of 6 then for a year every three months a series of three each maintenance and since last Nov I am every six months series of three. When I was receiving BCG every three months, I had chills, slight fever, etc – but never bleeding.
    Now I don’t have chills, but I do get a lot of pressure that lasts for several days. I am hoping the 10% is effective – I guess I will see!

    Nix


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • joey's avatar

    joey

    Member
    May 19, 2009 at 4:17 pm

    Nix I have had my 11 with the 12 tomorrow. I did have bleeding, urgnecy and frequency, chills, sweats,and mild fever for about 24 hours. I am still at 100%. So you have been getting BCG for 2 years every 3 months? I have read that a reduced percentage still is effective.

    Joey

  • sara.anne's avatar

    sara.anne

    Member
    May 18, 2009 at 2:46 pm

    When my uro and I discussed reducing the dose (which we did) he noted that there is no scientific basis for the dose we are given…”that is just the one they used in the initial studies.” Guess we should just be lucky the one they picked works!! My last was at 50% and may go down further next time.

    Sara Anne


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

    nix

    Member
    May 17, 2009 at 1:50 pm

    I think Bladder Cancer is at the bottom of the list for funding:(


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