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  • BCG – Been exposed to Tuberculosis

    Posted by mollyspal on February 11, 2010 at 5:57 pm

    I have been diagnosed with superfical blc and a golf ball size tumor removed with a TUR a stent was put in for 6 weeks and we are now in a 3 week waiting period after the stent was removed waiting for my first BCG treatment next week. Here is the question, about 13 years ago I was exposed to a person with live Tuberculosis, I did not get the disease but got the virus, what ever that means and I had to be treated for six months with a specific antibiotic for TB. Now, I can not take the TB skin test because it will always show positive. I have to have a chest x-ray every 2 years which has always been negative. I have informed my Dr. of this and she advised me that because of it, since my cancer was only superfical she will only do the 6 initial BCG treatments and not do any follow up treatments because she can not do the skin test on me. She will then follow up with scopes of my bladder to check for recurrance. Has anyone ever had this problem?


    Turbt Dec 2009
    BCG every 3 months since Feb 2010
    replied 14 years, 7 months ago 6 Members · 8 Replies
  • 8 Replies
  • 's avatar

    Guest
    June 25, 2010 at 3:13 pm

    Max..if you’re about to hit the wall your uro might want to cut the dosage down at least a l/3. Lamm has even gone to l/100th of a dose. If anyone knows the answer to your question its Dr. Lamm…and he will answer you.
    http://www.bcgoncology.com/drlamm/
    pat

  • Mcw2670's avatar

    Mcw2670

    Member
    June 25, 2010 at 2:49 pm

    Hi all
    somewhat late to this thread, but I am from the UK and was vaccinated with BCG years ago, so always test positive. It does seem strange that the physician would shy from further treatm,ents after giving the first 6, as the risk of not being able to detect systemic TB infection is still there. In the absence of acute symptoms, I would assume your status would be the same as when you entered therapy.
    What was alarming to me is that on starting BCG, nobody in the centre where I was treated had the least idea what prior exposure meant in terms of reaction to BCG and response to multiple therapies.
    In short, the literature appears to suggest that the pre-immune should respond more quickly and more robustly, as for follow up therapy in maintenance cases.
    The risks would appear to be 1) excessive repetition of the BCG instillation with attendant risks 2) too many treatments (which has been postulated to lead to loss of immune response and 3) my poor urethra !

    Anyone else has experience of the effect of pre-immune status as I am BCG 2/6 and about to hit the wall.
    courage to all
    Max

  • Mollyspal's avatar

    Mollyspal

    Member
    February 12, 2010 at 6:48 pm

    Thanks so much for all the comments and info. I feel better now. I will do more research and talk more to my Uro. I do trust her and feel she is thorough and she was going to look more into the situation before we actually did the first BCG which is still 2 weeks away.


    Turbt Dec 2009
    BCG every 3 months since Feb 2010
  • wsilberstein's avatar

    wsilberstein

    Member
    February 12, 2010 at 4:28 am

    As usual, Pat is right on. A positive PPD without signs of active tuberculosis (no symptoms [night seats, weight loss, cough] and negative chest x-ray) is latent TB. The treatment with isoniazid (INH) for 6-9 months is aimed at preventing reactivation TB later in life.
    To the best of my knowledge BCG does not increase the risk of developing reactivation TB. In fact, BCG is used as an immunzation against TB in areas outside the US where TB is more prevalent.
    In addition, I don’t think the PPD would be a reliable way to decide if the BCG is causing a problem, since the decision must be made on the basis of symptoms. A negative PPD would not be adequate to decide that the BCG wasn’t causing a problem if one was suspected.
    Even though you need your urologist for his expertise treating the cancer, you need him to consult with an infectious disease specialist, who you should consult with as well. Then your concerns will be accurately addressed and an appropriate TEAM will be making the decisions. Don’t forget, you’re a member of that TEAM, so you need accurate information to make your decisions


    -Warren
    TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
    Urethral stricture, urethroplasty 10/2009
    CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
    T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
    Incontinent. AUS implant 2/2014. AUS explant 5/2014
    Pediatrician
  • 's avatar

    Guest
    February 12, 2010 at 3:58 am

    Molly,
    TheraCys should not be administered to persons with active tuberculosis. Active tuberculosis should be ruled out before starting treatment with TheraCys. A test for detecting Mycobacterium tuberculosis infection should be performed if PPD (purified protein derivative of tuberculin) status is unknown. A positive Mantoux test, by itself, is not a contraindication to using TheraCys but an assessment must be made regarding whether the patient has signs, symptoms and/or a chest x-ray consistent with active or latent tuberculosis that requires treatment with antimycobacterial drugs.
    In other words he needs to run the tests or at least go to an infectious disease specialist who will run the tests and determine if you can take the BCG.
    Pat

  • sara.anne's avatar

    sara.anne

    Member
    February 12, 2010 at 12:22 am

    I am certainly not a medical expert on BCG. However, it does not make sense to me that your medical history would interfere with your receiving BCG treatments…and if it did, why would six be OK and not the maintenance? Statistics show that the maintenance regimen is much more effective that just an intitial series.

    I would ask Dr. Donald Lamm, if I were you. He is a recognized expert in the use of BCG and has developed the protocol most of us in the US are on. He is wonderful about answering questions…something many doctors do not do. Go to his web page
    http://www.bcgoncology.com/drlamm/
    and there is an “Ask Dr. Lamm” button on the left side.

    Good luck to you

    Sara Anne


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

    Alan

    Member
    February 11, 2010 at 11:44 pm

    Molly,

    Someone with more experience will eventually enter with a better answer. For now, I’d just be sure your URO is up to date with your past. Taking BCG includes a risk of contracting TB, albeit a small risk. Hence the urine test before instillation to be sure you don’t have an infection. After the instillation they will tell you to call if you have anything higher than a low grade fever (fever being opne of the possible side effects).

    As far as 6 treatments. I have read about a small minority that believe 6 is enough. A large majority believe in a “maintenance” protocol over several years. Some have had once a month for a year (I believe some of our Canadian friends get that type). Mine had me take 6 weekly, 6 off then 6 more and that was it. His reasoning was each instillation incurs some risk. I am almost 2 years out and clean.

    Basically, everyone case is different from types of tumor, size, quantity etc. I like a doc that is cautious, conservative and up to date which yours sounds like one. Keep posting and someone will have more insight, be an advocate for yourself and read what you can.

    Am enclosing a link for one of the better files on BCG: http://www.urotoday.com/prod/pdf/eau/05_TaT1_Bladder_Cancer.pdf

    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.
  • Alan's avatar

    Alan

    Member
    February 11, 2010 at 11:44 pm

    Molly,

    Someone with more experience will eventually enter with a better answer. For now, I’d just be sure your URO is up to date with your past. Taking BCG includes a risk of contracting TB, albeit a small risk. Hence the urine test before instillation to be sure you don’t have an infection. After the instillation they will tell you to call if you have anything higher than a low grade fever (fever being opne of the possible side effects).

    As far as 6 treatments. I have read about a small minority that believe 6 is enough. A large majority believe in a “maintenance” protocol over several years. Some have had once a month for a year (I believe some of our Canadian friends get that type). Mine had me take 6 weekly, 6 off then 6 more and that was it. His reasoning was each instillation incurs some risk. I am almost 2 yaers out and clean.

    Basically, everyone case is different from types of tumor, size, quantity etc. I like a doc that is cautious, conservative and up to date which yours sounds like one. Keep posting and someone will have more insight, be an advocate for yourself and read what you can.

    Am enclosing a link for one of the better files on BCG: http://www.urotoday.com/prod/pdf/eau/05_TaT1_Bladder_Cancer.pdf

    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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