Home Forums All Categories Non Invasive Bladder Cancer I did it again…and survived!

  • I did it again…and survived!

    Posted by sara.anne on June 2, 2010 at 5:40 pm

    Yesterday I had my third of three BCG instillations, once again at 1/3 dose. This seems to be working well. While the afternoon after the procedure was no fun, it was not nearly as bad as previous episodes. Some bleeding, REAL discomfort, but survivable. The only real side effect has been/is overwhelming fatigue.

    My uro offered to postpone the treatment yesterday due to the fatigue. He has had some very unpleasant episodes when he convinced someone to continue with treatments when they didn’t want to, so I think he leans over backwards the other way. However, I WANTED IT OVER NOW and since I didn’t have any signs of cystitis, I felt safe doing it.

    Think I have one more series left to go. Will find out for sure when I have my next cysto in August. Meanwhile, will probably sleep for the next week!

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
    replied 14 years, 8 months ago 9 Members · 16 Replies
  • 16 Replies
  • 's avatar

    Guest
    June 8, 2010 at 9:24 pm

    The use of TheraCys may cause tuberculin sensitivity. Since this is a valuable aid in the diagnosis of tuberculosis, it may be advisable to determine the tuberculin reactivity by testing before treatment……
    pat

  • mmc's avatar

    mmc

    Member
    June 8, 2010 at 3:39 am

    That’s right Sara Anne, it ‘could’ (I’m not sure it is always)make you react to a TB test.

    What Lamm is explaining is that they can do a similar thing with BCG to test skin sensitivity which would have a correlation to your sensitivety to the BCG.


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • nix's avatar

    nix

    Member
    June 7, 2010 at 11:51 pm

    You are right. My Internist did the “patch test” before I started BCG, because he said from that point on I would test “positive” and he thought it would be a good thing to have in my file, the “positive” was caused by the BCG.

    Nancy


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

    sara.anne

    Member
    June 7, 2010 at 11:26 pm

    Doesn’t BCG cross react with TB on a skin test? Thought I read somewhere that it did, and that those of us who have had it might test positive. If so, anyone who already tests positive on a TB skin test would have a positive reaction to BCG. ??????

    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
    June 7, 2010 at 10:21 pm

    Very interesting, Mike. That would have certainly helped you out in the very beginning.
    I am sure I would have tested fine, since I did get 24 – only the 24th was a problem. I guess my problem is because my Uro used 100% (or what they consider 100%) for at least 18 of the doses).
    We still don’t know if it is OK to start out with a lesser amount.
    Once a patient shows too much of a reaction, Dr Lamm did tell me that the Uro can also “heat” the BCG.

    We go as low as 1%. You can also reduce retention to 30 minutes or less.
    I also sometimes give heat inactivated BCG to those who do not tolerate
    live BCG.
    Don Lamm, MD

    Thanks for writing Dr Lamm with this question

    Nancy


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

    mmc

    Member
    June 7, 2010 at 9:40 pm

    I asked Dr. Lamm about the sensitivity testing for determing dose. Here is my question and his response:

    Question:

    Is BCG too risky to use in tiny doses subcutaneously in order to test a patient’s sensitivity? It seems like many people drop out (myself included back in 2006) of BCG treatment due to severe reaction. Your research and posting seem to indicate that lower dose strength does not have decreased efficacy. Therefore, it seems like it would make sense to start people on 1% or 5% and then increase if required to get the reaction desired rather than going the other direction of starting high and reducing.

    Just wondering if there is some way to test patients (maybe not researched yet?) for thier individual sensitivity to BCG so that urologists could set the dose to the patient and not just by personal preference. I know some start at 50%, 33%, or full. Patients react differently so it seems to make sense to find a way to tune to the individual patient.

    Seems like less dropouts would mean more lives saved.

    Dr. Lamm Response:

    Yes, Mike. I quite routinely give percutaneous BCG. It is not injected, but given by the TINE technique- like a smallpox vaccination. That does provide some measure of immune response.

    So folks may want to ask their doctors about this if they are going to start on BCG.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • Abeach's avatar

    Abeach

    Member
    June 7, 2010 at 4:44 pm

    With my first 30 BCG treatments I did half of them at 50%. The next day I would be almost be back to normal until #30. But I did recover from that one-just took longer with a complication. Then stayed clear for 5 good years! Then last fall began treatments again and had great diffculty recovering. My bladder was not happy and I was not happy so ready to give it up. My doctor finally went to 10% in February and I could tolerate it. I wish I had insisted in December to go lower since I was afraid to go anywhere other than home or work. Next exam is in September with 3 more treatments in October scheduled. They will be 10%. So don’t be afraid to go lower. You are listening to your body better than I was. Good Luck. Hopefully we both get 5 or more good years.

  • mmc's avatar

    mmc

    Member
    June 5, 2010 at 1:36 am

    Sure would be nice if there was a way to do some sort of sensitivity test on individuals to figure out the “right dose” for them.

    I don’t know. Subcutaneous skin test or something? Tiny little amount, see how bad it reacts and then gauge from that?

    Maybe some day someone will come up with that one.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • nix's avatar

    nix

    Member
    June 5, 2010 at 1:12 am

    Everybody reacts so differently to BCG, became apparent to me just reading our BC Forum the past 4 years. Some patients can’t get through the 6 weeks, due to reaction, while others go through 30 with little problem.
    I did well until the 24th. It did get harder each time, but when I went for my 24th I felt good that day, no infection, BCG dose was 10% and downhill from there.
    My Uro @ Moffitt works with BCG all the time and said that happens. Sometimes it is one too many, no warning, bladder just had enough :ohmy: So one year later, I am still trying to get over that last BCG.
    I guess it would be hard to test for the perfect dose, because everyone reacts so differently.
    So far the BCG has kept the CIS away for 2 yrs 8 months, so at least it worked so far :laugh:

    Nancy


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

    sara.anne

    Member
    June 4, 2010 at 5:42 pm

    I think I have one more series to go. Will find out for sure when I have my cysto in August. If so, will go ahead with 1/3 since it went so well this time. This is my third time on this dose, and it went so much better than last time…at the same dose.

    Yes, SOMEONE needs to do a clinical trial on this stuff. There is no scientific rationale for what we get. My understanding is that the initial dose was chosen because that is how it was packaged from the manufacturer(s), and a number of urologists’ experiences have contributed to what we do now, especially Dr. Lamm’s. BUT there has not been a controlled clinical trial done.
    And of course, NO ONE would do a placebo-controlled trial now!

    Sara Anne


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

    joey

    Member
    June 4, 2010 at 4:43 pm

    Sara, great news, hang in there.

    I have my cysto follow up 06/10/10 then if all is clear I will have my 16 through 18 BCG installments starting 06/15/10. I will also then be on the 6 month plan which is worrisome. Amazing the closer you get the more worried one gets.

    Joey

  • mmc's avatar

    mmc

    Member
    June 4, 2010 at 11:37 am

    Glad to hear you have another series behind you! It might be worth discussing reducing further to maybe 1/10th. As Nancy noted, Lamm goes as low as 1%. If 10% induces the reaction, that’s good enough (and he’s told me before and I’ve quoted him other times that it may even be better).

    My guess (just a guess) is what they really need to to is figure out a way to determine the absolute minimum amount to produce a reaction in each patient. Collect the data on that around the world and then reset the standard. If 80% of the population of bladder cancer patients got the reaction needed at a 1% solution, then you have a new standard. Then they would be increasing the dose for those that don’t rather than dealing with some potentially very nasty side effects for many and then having to scale back the dose.

    In any case, glad you are through this series!

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • nix's avatar

    nix

    Member
    June 4, 2010 at 11:13 am

    Good for you Sara Anne :laugh:
    Just remember you can go lower than 1/3 dose. In response to my email Dr Lamm said:

    We go as low as 1%. You can also reduce retention to 30 minutes or less.
    I also sometimes give heat inactivated BCG to those who do not tolerate
    live BCG.
    Don Lamm, MD
    On Sun, 24 May 2009 19:22:39 -0400,

    Your Uro can keep going down in strength. Less is better with BCG. The purpose is for a reaction from your bladder, and as long as you are getting a reaction, less is better.

    Nancy


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

    pemquid

    Member
    June 3, 2010 at 11:50 am

    Great news Sara Anne! I know you were somewhat delayed n getting this round of treatments, and that you were concerned about the potential level of side effects, so this is good news indeed.

    I, too, was pleased with the 1/3rd dose of BCG I recently had. I did have persistent (though mild and very bearable) symptoms after the third weekly dose — some sense of urgency, burning, etc. — that lasted well over a week. If that’s as bad as it gets at the 1/3rd dose, I think I should be able to tolerate the whole series. The nurse doing the treatment told me that they’d changed the protocol from a total of 30 instillations down to 27, so I’ll have one more set of 3 this year and two more next year (9 doses), and then I’ll be done. the nurse also said that they now had quite a few people on BCG who were down to the 1/3rd dose, and so far they seemed to be doing well in terms of symptoms.

    Again, congrats on getting through this round of treatments without too much difficulty.

    Ann


    Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
  • Alan's avatar

    Alan

    Member
    June 3, 2010 at 12:51 am

    Sounds like a good report! You have and will beat this!

    Alan


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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