Increase in symptoms from BCG

[Peggy Anne]

Can anyone tell me if they have increased frequency and urgency from getting BCG instillations? Also I have never, ever just "leaked" out and now it happens a lot. My 10 year old daughter even "planted" extra underwear in my car "just in case". I really love her!
I've only had 3 instillations and this really has me worried - It's like I'm going backwards.... and I have 3 more to go! eek

[cbsummer]

My symptoms never got worse except for a few hours after the treatments. It took about 2 weeks before I feel I was getting better. I felt improved for about 6 weeks. I was able to ride my horse which had been a long time. I am back to square one now. Just got back from town. I was gone 45 minutes. I emptied my bladder before i left and then again at the store and was in severe pain by the time i got home. At least i don't spend much money as I do not like going to town. My son is getting married Saturday and I still haven't got a dress. I am hoping I can try again this afternoon. Sorry to go on about myself. Hope you get better.

[Peggy Anne]

Im so sorry you are back to square one, when we do these things to get better, the whole time we're just so happy we're "on our way" to getting better, and them when it was all for nothing it's really hard to deal with. Are you going to try doing the instillations again or something else? Whenever I have to go shopping I make sure I go alone, no kids!, I give myself plenty of time and I go to the bathroom in every dept store I go to - before I start looking. I've learned that if I do that I have more time to look and i'm not rushed because I "gotta go" Good luck dress shopping and have a wonderful time at the wedding! Im going to ask the doctor today before I get my next instillation. Maybe its not supposed to get worse before getting better.

[cbsummer]

well how did it go yesterday? I think I am going to try the bcg one more time (suppose to do three times instead of 6) I have an appointment on the 14th so we will see. I know the uro will come in and ask well what do you want to do now ? He told me last time I would have to have it done as maintence if it worked. Every 3 to 6 months. Depending on what I felt worked. As far as the dress goes I have decided to wear the one I wore to another son's wedding. It is nice and cost lots.I told my son this and he told me "you looked beautiful in it"(sometimes children can say the right things)and he thought I should wear it. One less thing on my to do list. The wedding pictures of my children will have me as constant thats Mom's "wedding dress". We had some good laughs. Her side of the family has never seen it so it will be new for half of the quest.

[Peggy Anne]

I'm glad the dress problem is solved, I hope you have a wonderful time! Well, yesterday was pretty rough - not to mention it's getting harder and harder to wait 2 hours. I tried taking a warm bath and lots of Motrin and it helped a little but it was definitely a lot worse than last week -the burning was horrible. I'm dreading next week but that will only leave one more so that's a good thing wink Let me know how the wedding was! My husband and I are going to Santa Monica for the weekend to celebrate our 15 year anniversary - I'm looking forward to a nice relaxing warm weekend!

[Debra]

Hi,
I did the BCG treatments (8 of them) 3 years ago. I definitely had a worsening of symptoms throughout most of the time I was doing the treatments (but particularly for the day afterward), but then it seemed to subside. BCG didn't seem to be helpful for me, but I know it has been for others.

Peggy Anne - something you may want to try - if you have any narcotic pain meds, you may want to take one before the instillation. I did that toward the end of my series and found that it made it easier to hold the BCG in for longer as well as helped with the burning a little bit. Hope that helps.

Good luck!
Debra

[Peggy Anne]

Thanks Debra, I will definitely try that - I tried Motrin last time and that did absolutely nothing... Im not sure if the BCG is helping but this weekend I actually went 1 time in a 5 hours period, and that was 5 hours riding in the car! Maybe there is hope lmao

[cbsummer]

hi was just thinking about u hope your treatments didn't get any worse. I go in to doc friday I think for the first of 3 treatments. (maintence is what it is being called) Can you tell a difference yet?

[Peggy Anne]

Hi CBsummer, Tuesdays' treatment was really different as Tuesday was great - hardly any pain at all, but Wednesday was a nightmare. Each time I had to go to the bathroom, which was every 1/2 hour, it got worse and worse. And the worst part of it was, since Tuesday was fine, I had scheduled 5 different appts and 6 different errands to do since I had the day off. Big mistake! So next week I will definitely expect the worse and since it's my last, it will be fine! Good luck with yours! hopefully, since the first few were not so bad for you last time, and you only have to have 3 this time, it will go good. No improvement yet, but I've read it takes a few months. I am still optimistic :p

[cbsummer]

How did you come out yesterday. I had mine on friday not to bad but am just irratated since. I go in again today for another one. I am not looking forward as I am already irratated. I sure hope this works if not I am going in for another hydro. take care and again I hope it went ok for you.

[Peggy Anne]

Hi CBSummer - this one is the worst, talk about irritated! and once again, it didn't start to feel so bad until today. I was suppose to have today off, but my boss is going on vacation tomorrow. I've been bouncing in my chair all morning, I really need a hot bath! I hope your next one doesn't make you feel worse.. good luck! I have another question - once your 6 were done last time, did the doctor do a cysto, and go in and look at your bladder to see if there was any change? I have an appt on Monday to talk to my doctor and I want to be prepared. Thanks!!

[cbsummer]

After my last of six it was see you in three months if it gets worse come back in. It took a couple of weeks before I could say I felt better it just didn't last long. I am going in today with a bad attitude. Ususally i go into the doctor and am in a pleasant mood not so sure about today. So we will see what happens last time on my 4th of 6 I really complained and the doc wanted to reduce the amount they used I went with the full strength in hopes of future some relief. I have a crock pot dinner ready so I won't have to deal with dinner. Sorry you aren't doing well today . I am luckly I work out of my home (we have a construction business) so I am able to do what I can. There isn't much that won't wait till the next day. If there is my husband deals with it. Good luck with the rest of your day. It is almost over.