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  • suz z
    replied
    Well, after six instillations of BCG I've had no side effects, no flu like symptoms and so far have not felt better. I had written to Dr. Peters about doing it again, and he had written back that there would be no problem trying again, so I did.

    Improvement could come in a few weeks, possibly, but somehow I doubt it.

    Cystisat is a soothing instillation that I've been doing, and my friend as well, along with bladder distentions, because that helps too.
    Remember, there is no absolute cure, and I'm not in a study, so I don't really care what it is that works! I just want to feel better.

    The BCG had gotten my pain level down from 7-8 to 1-2, but still with occasional flares which weren't so bad but still came. That was the reason for the Cystistat.

    So, he new plan is to start Elmiron, which I started last Friday, along with an antihistamine. I just don't know what antihistamine, because they make me very jittery (rather than sleepy). This time I tried Claritin and it made me jittery too. I am going to talk to a pharmacologist (not pharmacist) tomorrow to see if he has any suggestions.

    I was not worried about infections from BCG. I believe Dr. Peters that the odds of getting sick are very small, and just think of all the side effects of other drugs and treatments we use!

    Keep hoping...

    Suz

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  • LM
    replied
    Thanks Dedeash, I will send you an email if that's ok. I just wish there were more people who have had it done so we could know more about these risks. Right now I just have a bad feeling about it based on the stories of 1 or 2 people and I don't know if I'm getting an accurate picture. I just really don't want to get any worse than I already am Anyway, i'll send you an email if that's all right. thanks again

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  • dedeash
    replied
    Hi
    I have not tried the BCG but my uro is Dr Peters, so if you would like to send me a list of questions, I could ask him and post the results. I have just had the staged Interstim done and it was a success after 3 surgeries. If I want to do anything else in the future, my next step would be the BCG.

    Dede [email protected]

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  • LM
    replied
    Thanks so much again Suz. Good luck tomorrow. I just have one more question - you said that you and your friend did Cystistat when comfort levels got worse...are you saying the effects of the BCG lessened for your friend as well? Did yours get worse before the cortisone and the infection? I read in Dr. Peter's transcript that he thinks any improvement is lasting or even continues so I'm curious if this is not really the case.

    Let me know how it goes this time. I know what you mean about wanting to feel something so you'd know it's working. But it sounds like you have a great doctor who is really trying so that's a good thing. Sorry to be such a pest, it's just a huge help to hear from someone who's personally done it rather than a doctor who doesn't really care (like my former Dr.)
    ~L

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  • suz z
    replied
    Oh, forgot to say: I'm not getting any flu-like sypmtoms this time. In fact, no symptoms at all. I almost wish I did cause then I would know it's doing something, but maybe it is anyway and I'm just lucky not to feel sick.

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  • suz z
    replied
    The big turnaround for my friend, in terms of pain, was after the BCG, relief starting at around the 5th week, more at around 2 months and leveling out after 6 months, just like me. She had been taking Elmiron at the time for about a year and did not stop taking it.

    However, I had the BCG at the same time and had similar results and I have never been on Elmiron.

    Both of us had done Cystistat instills before the BCG and after the BCG when comfort levels fell a little. Cystistat is soothing.

    What is it that helped? Well, working backwards, for me: I stopped the Cystistat on a regular basis and it didn't significantly change things. However, I felt specific relief after the Cystistat for a few weeks, better than usual. As I said, I'm not on Elmiron.

    My pain started to rise around six months ago. It is possibly related to a high level of cortisone I was given to try to treat a massive skin condition following lots of IV antibiotics. So, was it the cortisone or the antibiotics which may have started the pain flare again, and will the BCG I'm doing again reduce it back down again?

    Don't know. I'm going for 6th instill tomorrow morning. I had two and asked the doc if the Cystistat we had done the week before might have affected the result, so he added three more to the schedule, and might add two more after that if we don't get any positive change.

    Wouldn't it be great to figure out this puzzle? My doc is right. If I keep doing different things at the same time I'll never find out what works, but of course I'm more interested in relief than he is, and he is more interested in information, not to say that he doesn't care about pain relief in his patients.

    I just want to be as NORMAL as I can be. Maybe never NO PAIN, I'll live with that, but just please, low enough level to be able to stay pysically active.

    If I can help with any more info please post again or email to [email protected]

    I'll let you know how it goes.

    Hugs and healing,
    Suz

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  • LM
    replied
    Thanks Suz and Debra.
    Debra I'm so sorry it didn't work for you and you've been suffering from these infections. That is scary. My mom is always saying everything you do could make you worse and I guess it's true Also like I mentioned I think Diane had problems with infections too. I wish they knew more about what it does to the bladder. I wonder if it causes more damage and thus makes it more vulnerable to infection. Have you found anything that helps?

    Thanks also Suz. Let us know how you fare this time around. I was encouraged to hear of your friend but when you said she was on Elmiron already I wasn't sure if it was the elmiron that helped her. Was she feeling better before the BCG?

    I had spoken to someone who had such good success with it that it gave me renewed hope but now I'm not sure. I certainly don't want to get worse. And I guess you never know what happens to people afterwards (I haven't spoken to this person in a long time)...maybe she had negative effects after a few months as well.

    Maybe I will consider writing Dr. Peters - that's amazing how nice he sounds. I'm so shy though when dealing with doctors. I'd feel weird just writing him out of nowhere.

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  • Debra
    replied
    Hi,

    I'm sorry that I haven't responded earlier, as I was one of the people who had written previously about my experience with BCG.

    BCG did not appear to be effective for me, though I know it has for others. I am also the person who has been getting recurrent bladder infections. I don't know if it is related. I did the BCG in winter/spring 2000 and then began having UTIs in August 2000. I have had about 15 UTIs since then, and nobody can give me a straight answer why. It may very well have nothing to do with the BCG. I also started taking Ditropan XL around the time I started getting infections, but I had taken many different anticholinergic drugs before that (including regular Ditropan) which never gave me infections before- in fact, I never had an infection before Aug 2000. Maybe the BCG left my bladder vulnerable in a way that would make me get infections from a drug like Ditropan. I also got an infection 2 times this spring when I tried to start taking Prozac. My old uro (I just moved from NJ to Boston and am currently without a doc) denied a connection. Personally, I have no idea. Everyone is so different and our bodies are so quirky!

    As far as testing positive for TB, I work in hospitals and have been testing probably 6 times since then. I have never had a positive result. The first time or two that I was tested, however, I had a slight flu-like reaction for a day, which was very similar to how I felt after BCG instillations. That didn't happen after subsequent tests, though.

    Whether or not to take something as experimental as BCG is such a difficult decision. Since the risks are so unclear, but some people have had such success, just tread carefully and make sure you're comfortable with the knowledge level of your doctor around this.

    Good luck!
    Debra

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  • suz z
    replied
    Dear LM, you're right, it's a weakened strain, not completely killed.

    I have been doing Cystistat for about three years, off and on. Sometimes as close as every two weeks, sometimes waiting as long as a few months, depending on symptoms. It always makes me feel better within about two days, but it doesn't last. I wasn't doing the Cystistat at the same time as getting the acive BCG instillations two and a half years ago. This time I had just had a Cystistat instillation a week before the BCG started and the uro didn't think it would be a problem. But we guess now that it was.

    I'm not Dr. Peter's patient and I just emailed him and he replied. I looked up the site for Beaumont Hospital in Detroit and emailed him there and he responded immediately. I think that is Sooooo nice!!!! Not many busy doctors would bother to do that.

    No, I'm not angry about the pharmacist - why should I be, sorry if I sounded that way - just wondered why a pharmacist's opinion about this would be more important than a uro's - but then there are uro's who are clueless and pharmacists who really know their stuff, I guess...

    If there is anything else I can tell you, please post again.

    I'm going for the second of this set of instillations on Wednesday, and then another the following week and then I'll talk to the doctor and we will decide if we need to do two more.

    I haven't had any symptoms this time and we don't know if that's because I've had it before and have developed an immunity or if it's just not working because of the Cystistat instillation just the week before.

    I'll keep you posted.

    Suz

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  • liz2
    replied
    LM, If you are talking about me with Elmiron and instills, My uro and I found out the hard way that neither Elmiron nor instills alone were sufficient for treating my IC. And even with the combination, I have to have hydros every 6-8 months in order to handle the pain and have some quality of life. My IC is very severe.

    Leave a comment:


  • LM
    replied
    Hi Suz, thanks so much for your detailed reply. I don't think my pharmacist is trying to outsmart anyone, she just reported a fact to my mom that she has a client who this happened to. You sounded kind of angry by that comment. Anyway I thought it was a weakened strain but not actually killed. There were some researchers near me studying a killed version, and they didn't publish anything but I read they didn't have good results.

    Liz, as far as the Hunners ulcers, I just mentioned that b/c I thought I remembered reading in Dr. Peter's transcript that it was contraindicated for those ppl ...but I remembered wrong, so I apologize. He said it's ok for people with the ulcers, but not ok for people with "active bleeding".

    Suz can I ask you another question - I'm not clear if you're saying you're doing the Cystistat at the same time as the BCG or you're doing it now and if it doesn't work will then do the BCG. I read that about the BCG binding to the elmiron so I was afraid to do any instillation of a coating nature since I thought it would have the same effect in blocking the BCG? I wonder if I could email Dr. Peters with these questions if I'm not his patient.

    Well it is encouraging to hear people's success stories. Was your friend feeling better at all from the Elmiron before she did the BCG?

    Thanks again, ~L

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  • suz z
    replied
    I'm sorry that I've been out of touch and haven't responded to questions.

    I had BCG treatments for the first time in April 1999. It was not a trial. I have never been in a trial.

    By the 5th instillation I was starting to notice something different, didn't know what exactly, but some relief. By two months, I was feeling a lot better. By six months I attained maximum relief from the BCG. My pain level went down from 7-8 to almost non-existent to 2. I say almost non-existent because I'm always aware of my bladder and healthy people aren't, but even "2" is in the discomfort area compared to PAIN in the 7-8 area, for me.

    About six months ago the pain started sneaking back up again. I wrote to Dr. Peters who is the most active in BCG research and asked him what he thought. He replied immediately and said that he has done second rounds and advised a full strength dose but for only 3 weeks, and then see what happens.

    I approached my new doctor (I moved to VT from FL) about doing this second round of BCG and was told it would be fine. Then due to some administrative foul ups between my primary doctor and this doc's office, which is not an issue regarding the use of BCG, I chose to change doctors.

    My new uro felt that a "booster" of BCG would be fine. He does not, and neither did the two other uros I had seen in the past 4 years, think that BCG is dangerous. Yes, it is true that there have been some bladder cancer patients who have contracted BCG but please consider that they were in different situations than we are. As far as I know there have been no known cases of TB with IC patients to date.

    Also, I have been assured by my doctors, that the BCG instillation does not make you a carrier to other people. The only time you have to be careful, according to the protocol is that you should chlorinate the toilet you use when you void after the instillation, for the first six hours, however often you void. That will make sure that the BCG is not possibly transmitted through bodily fluid to another person using the same toilet.

    Otherwise, think of all the nurses who instill BCG in bladder cancer patients day in and day out all over the world. They are not getting TB!

    LM, what make your pharmacist an expert on BCG compared to an MD-uro who uses it??? Also, you should know that the BCG is a deactivated strain of TB. IT is NOT active TB virus.

    As far as pain: I have experienced absolutely no pain with the instillation. I go in first thing in the morning, without eating or drinking so that my bladder is as empty as possible, get the instillation and then start to flush with water (and eat) after my first void. I try to hold the BCG for about 3 hours. (It's only about 40cc's.)

    Yes, if you have problems being cathed, you might want to ask for a small cath, like a 14 French or even a pediatric 10. It will take a few more minutes to instill the BCG but it does not hurt. There is no lidocaine used, in fact lidocaine is contraindicated because it will kill the effects of the BCG. Also Dr. Peters has stated that anyone who is on Elmiron should be off it for at least two months before doing BCG. I don't know if this is to make sure that the BCG is what is effecting healing in his studies or if, as he wrote in one of the interviews here, BCG binds with the Elmiron and makes it less effective.

    Anyway, sorry this is so long, but there is more.

    I have been using Cystistat as well, because it coats the bladder lining and helps some more. I had a Cysistat instillation a week before I started the BCG. After 3 instillations there was no improvement. So, last week we agreed to do 3 more, assuming that the Cystistat may have interefered with the efficacy of the treatment and if I still don't get relief, my uro said he would do 2 more.

    If that doesn't work, we'll think of something else!

    The bottom line is that it did work for me, for more than 2 years. It also worked for a fried of mine who had the BCG at the same time that I did, and she has Hunner's Ulcers. She's still in "remission" and can eat spaghetti with tomato sauce and drink Margaritas! That's really saying something. Also, she is on Elmiron, and has been for 3 years and didn't stop when she had the BCG - so draw your own conclusions - I can't tell you why or what worked...

    But I do think it's safe. Safe enough.

    Heck, you can get killed crossing the street!!!

    I'll check in again to answer questions. Sorry I've been gone.

    Hugs to everyone, and hope you're doing ok.

    Suz

    Suz

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  • LM
    replied
    Thanks Yvette - you can see I had a lot of the same concerns then. I've been reading occasionally to see if there were any follow ups on some of those people but none of them post here anymore so I don't know what to make of it. There are still too many unanswered questions for me. Like the few people who seemed to get more infections afterwards, etc. And I wonder what happened to all those who don't post here about it anymore - like some of the people in that thread - I always think the worst. I have read those posts by Diane and I found them encouraging but I don't know how it held up for her in the long run either.

    My mom is just so against it and I guess I couldn't do it for that reason as well, since if something really bad happened she would just be saying "I told you so".

    What does it mean to be a carrier anyway?

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  • yvette
    replied
    To LM and Others wondering about BCG: I reposted a post I did a while back on BCG. ICN Diane posted a wealth of info. I thought it might help you all

    LM: As you know BCG is a strain of the tuberculosis virus, that's what TB stands for. I wondered too if I might become a carrier for the TB virus. I know my mother is, because of all the Mantoux tests she's had. In her line of work, as a social worker, she was always getting the Mantoux test done.

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  • LM
    replied
    Hi again, I discussed BCG with my mom today and she is totally freaked out by it b/c our pharmacist told her of a client who's now a "carrier" of TB ...so she thinks I'm going to get TB. I don't even know what that means. But I guess that explains some doctors' hesitations.

    I'm confused from your posts in my elmiron thread about that study where you say how much it has helped. I just realized it was the same person so I'm confused what treatment you think is helping you. Do you think the elmiron would not be enough and that is why you are also doing the instillations?

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