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  • BCG side effects

    I am seriously considering having BCG treatments. Does anyone know if there are any side effects? I am very suceptible to side affects and so far have not heard of any. Also, are these instillations or injections? I can't find any info on the actual procedure. Thanks so much! <img src="graemlins/hi.gif" border="0" alt="[hi]" />

  • #2
    Hi Peggy Anne:

    I am currently participating in a BCG study at the University of Maryland. The BCG, a live but weakened form of cow tuberculosis bacteria, is instilled into the bladder and side effects can include (I've taken the following directly from my consent form associated with this study); burning on urination or frequency or urgency of urination after each treatment that usually resolves by the next day, but may last for several days following each treatment. If needed, medications such as Pyridium, Urised, Levsin, or narcotic analgesics can be taken to manage these symptoms. Visible blood in the urine has been reported by about a quarter of the patients who receive BCG and almost always resolves on its own.

    You may experience slight fever and mild to moderate flu-like symptoms, such as chills or sweating, muscle aches or fatigue. These symptoms may last for several days after treatment and usually responds to Tylenol or related aspirin-like agents.

    Additional side effects include, but not limited to: coughing, nausea, vomiting, abdominal cramps, incontinence and loss of appetite. Joint pain or swelling or rash could be evidience of an allergic reaction to the BCG organism that may require stopping further BCG treatments. Fewer than 1 in 100 males have inflammation or infection of the prostate, epididymis (the tube that carries sperm during ejaculation)or the testicles. This inflammation or infection may be painful and require additional treatment with antibiotics active against the BCG organism.

    Reports of life threatening illnesses which have led to death are rare. But serious BCG complications include; hepatitis (inflammation of the liver), tuberculosis pneumonitis (tuberculosis infection of the lungs), contracture of the bladder (scarring of the bladder muscle which could, in rare cases, necessitate surgical removal of the bladder), blockage of the ureter (tube that carries uring from the kidneys to the bladder), tuberculosis infection of the kidneys, and sepsis (tuberculosis infection of the bloodstream). If such risks occur, you will require hospitalization and may require treatment for up to 3 to 6 months with antibiotics active against the BCG organism. Over the past 15 years, there have been 10 reported cases worldwide of BCG-related deaths in patients who received intravesical BCG treatments for bladder cancer. Peggy Anne, this drug is used in millions of bladder cancer patients world-wide, with a 70% success rate in patients who are diagnosed early enough.

    Even though I'm in Phase One of the study which is double-blind, for six hours after each treatment, I have to put one cup of bleach in my toilet after urinating and wait 15-20 minutes before flushing. This kills the BCG organism and prevents it from spreading. I was strongly advised NOT to get pregnant during my treatments and was asked to use a medically approved form of birth control, like condoms or oral contraceptives, and not to have sexual intercourse for 48 hours after each instillation treatment. For two days after each treatment, I take my temperature at night just before bedtime. A temperature could indicate that I am suffering from an infection from the BCG organism that will require additional treatments w/antibiotics. If my temperature is 101.3 Farenheit (38.5 Centigrade) and/or have flu-like symptoms for longer than 48 hours after treatment or if I experience severe episodes of muscle or joint aches, fatigue or bloody urine, I must contact my doctor IMMEDIATELY.

    It sounds very scary, but it really isn't. I'm not going to comment on whether or not I feel I've gotten the BCG or placebo. I'll let everyone know when it's revealed in...July [img]frown.gif[/img] . What I've heard from the nurses though, is that it's far better than DMSO instills and, so far, they're seeing good results. Not everyone responds to BCG, but early indications show that many will.

    Take care and let me know if you have additional questions.&gt;Tina
    What you are is God's gift to you...What you make of yourself is your gift to God.

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    • #3
      Tina, thank you so much for giving me all that detail, it really helps. I didn't have doubts until the nurse told me that its "really harsh" but never explained what harsh meant. I'm they type to get the side effects so I want to be very aware of what I'm getting myself in for. This option does sound better than the Interstim though, its not as invasive. Thanks again and I hope you are part of the test that gets the actual BCG and that it helps you!
      Peggy hi

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      • #4
        My urologist who is supposed to be one of the best in the D.C. area was adament about not taking BCG. He looked at me like I was nuts. He really scared me so much I never asked why. Just thought I would pass this along

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        • #5
          Malone:
          The current BCG study I am participating in is administered by a very prominent doctor, Dr. John Warren M.D. at the University of Maryland. This hospital, along with Stanford University and ten others are also participating in this study. I realize your doctor may be very good, but I also consider my doctor to be very well informed and would never put his patients at unacceptable levels of risk. Much like their patients, doctors also have their opinions. Please don't base your opinion on ONE doctor's statement and fear. There are many doctors who think it's crazy to prescribe narcotics to IC patients. I think we know what the truth is about IC pain and the need for relief.

          From what I've read and questioned my doctors, BCG works by stimulating the immune system and has been used on millions of bladder cancer patients worldwide for many years with an 80% cure rate. BCG does not cause "damage" to the bladder, as has been suggested about DMSO.

          Please check a few more sources of information as I think you will find that it's not as terrible as your doctor portrays it. I think we all find that, with new ideas, there is a bit of fear of the unknown. I'm just one of those people who doesn't let fear dictate my life.&gt;Tina
          What you are is God's gift to you...What you make of yourself is your gift to God.

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          • #6
            Malone: Did your urologist say why he was so against it? I am going to start getting instillations next week and my doctor seems pretty positive about them. Two of her paitents just completed theirs and are doing great. Now I'm getting a little worried.

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            • #7
              Hi Peggy,
              I have been thinking about BCG but thought I would have to wait until the study was complete. Is it possible to do it now, and if so, is your doctor ok without the study results in yet? (Or are they in and I missed a beat some where?) I have tried everything but interstim, had a hydro 7 weeks ago for treatment which gave me back capacity but I am weary of the flares and pain, and was thinking about another shot at cystistat. However its so expensive and did nothing the last time (last Sept/oct). Thanks for your help,

              hi

              LOG
              One day at a time

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              • #8
                I have had bcg treatments, I am not in any study. I live in a small area . My uro had heard there had been success with the treatment and as I have not had much response from other treatments he thought it was worth a try. Another interesting thing is my insurance company has paid for the treatments. The cost is about 500 per vistit.

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                • #9
                  My doctor knows BCG is being tested but is very happy with the results her other patients have had. She recommended that I read as much about it as I can. She was a little disappointed that I didnt want to try the interstim but is very willing to try the BCG. She won't let me do it at home like I did with the Heparin instillations. I also have tried almost everything so I figure why not with the BCG - just make sure your doctor really knows a lot about it. The only bad thing is my insurance changed as of 2/1 and now I have a $300 deductible so I guess my first instillation will be $300
                  Good Luck with whatever you do hi

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                  • #10
                    CBSummer: Are you getting the instillations right now? Are you having any success? And was it really painful? Sorry for the questions, I just really want to be prepared this time. I hate surprises and I've had too many!
                    Thanks so much! Peggy

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                    • #11
                      I had 6 treatments in Nov. and Dec. I am to go in again in March for 3 more. Was it painful well the first two were a peice of cake. The last four was very painful for about 6 hours. Severe burning. Is it working? I think so. I am not as bad as i was. Freguency at nite is starting to come back. But my main complaint was pain. My lower back and bladder area just ached. There was constant burning. That all seems to be somewhat less. I am able to deal with it now. I just was hoping for total remission. Like you I refused the interstim. My last doctors appt was if this doesn't work u should maybe consider the interstim. (he is also the one 6 monthes ago told me he didn't have much faith in it)

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                      • #12
                        Thanks CBSummer: I think doctors run out of alternatives and start to change the way they feel about a treatment just so they are doing something to help us. Right now my IC does not limit much in my life - with the interstim I think it would. Some pain once a week for 6 weeks sounds much better than having an invasive treatment affecting every moment of my life. One more question - Did you take the day off or were you able to go back to work after the instillations? and thanks for your post - hearing about others experiences somehow make these procedures easy to get through blink

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                        • #13
                          I took the day off ( I do bookwork out of my home) like i said the first 2 weren't bad i could of gone to work. You have to hold the bcg for a least 1 hour 2 if you can. You are suppose to lie down and turn frequently to coat your bladder. For 6 hours after your are to put bleach in the toilet after you void and let it sit for 15 minutes before flushing.This would be hard at a work place. I must say your toilet gets a good cleaning. I agree with you about the interstim. I think doctors get as frustrated as we do. Mine was so excited about bcg i couldn't say no.

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                          • #14
                            Ok, I've scheduled my 6 appts - they made them for 3:00 so I won't have to go back to work. Do you pour the bleach in the water or wash the whole toilet? Sorry for the questions, I just want to be prepared. They said to bring a book and since the only place I have time to read is at red lights, this is going to be kind of nice - unless the pain is bad. But I'm going to be optimistic - NO PAIN! Thanks for you help!

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                            • #15
                              sounds like they are going to keep you there while you hold the bcg in your bladder. I left as soon as it was instilled. I was told to put the bleach in the toilet water and let it sit for 15 minutes. They gave me a hand out sheet with instructions. For me the pain didn't come for about 4 hours. It was nice being told to stay in bed and read. It is hard for me to sit and do nothing. Good luck a few hours of discomfort is well worth it. The firsr few treatments weren't bad at all.

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