side effects of BCG treatments

Hi Sarah Anne,
Thanks for your input and support. I appreciate it so much! Hope you are doing well
Kim

Hi Kim,
I am half way through the 1st six BCGs. I was diagnosed in May had surgery in June and recurrence in September and another TURB in October. I switched MDs and had biopsies done in November which were all clear.
I feel some discomfort generalized but no pain. I do feel tired and wonder if it is flu season coming to visit or just part of the side effects.
I wish you well and know well the emotional roller coaster that seems to present itself. I just joined this site and think it may be a real good resource for information and support.
Good luck, stay in the moment as much as possible and happy holidays. chip

Thanks so much for all this information!! It helps so much to know others are experiencing so much of the same thing. Most of all, it helps to know what I can expect! BCG = Bladder Cancer Gone...luv this, it's my new mantra

Kim,

I just realized that I didn't really directly answer your questions, so here goes:

Q: "Are the treatments making some people so sick they can't work?"
A: I couldn't work yesterday (day of treatment). My doc suggested taking advil or tylenol and said the symptoms would abate in 24-48 hours. This morning I left for the office with the caveat that I would leave if feeling bad. Well, the day went fine. In my experience, I would advise not being too hard on yourself -- take it one day at a time -- if you feel crappy don't go to work. If you run out of gas of feel lousey when you get to the office, leave early. Every time is slightly different in my limited experience.

Q: "More importantly, how do you handle them so they don't get you down. Are there ways I can avoid this getting worse?"

A: I'd love to have the answer to this question, myself. The Advil worked great this time -- ask your doc. It was the first time I'd used something. Don't know if it's coincidental or not.

Q: "I would never admit this to my family, but I'm pretty scared right. I'm attempting to carry on as "business as usual" but it's getting hard. Anybody's imput would be appreciated and would help put my mind at ease."

A: This is the issue I have the greatest difficulty dealing with, too. My friends and most family members don't know about my situation. I don't know if I'm still in some form of "Denial" or if I'm protecting myself from well meaning friends and family over-reacting and scaring me even more. I am seeing a counselor in private, and decided to go on an anti-depressant, and have enrolled in an MBSR program. All are helping. At this point the mental part of this diagnosis is more difficult than the physical. It's tough when you try to be strong -- not telling folks -- but , in my opinion, you need support whether from groups like this one or from a good mental health professional.

Hope this helps a bit.

I have had 18 treatments to date. My next 3 start in january. My first 6 initial treatments I had almost no side effects. I did have 1 recurrence (at least one pathologist thought so) at my first checkup but have not had any since and that was 04/08. My side effects are very similar as being tired for about 24 hours. I also get a temperature, the chills, frequency, pain and I also most of the time get a rash. Everything lasts about 36 hours after my treatment and then I am been pretty good to go. I have not had to deal with depression resulting from the treatments.

Hang in there and brighter days are ahead

Joey

Hi Kim,

I am also a 52 year-old female and new to this forum! I just came home about an hour ago from getting the first of my second series of BCG treatments. I was diagnosed in June, and it was a total shock. (Had 6 treatments this summer/fall...cysto...now on a series of 3).

Some of your symptoms sound pretty similiar to what I experienced: generally run down, yucky feeling, and just when feeling better it was time for the next treatment.

The depression thing caught me by surprise because although I WAS distressed and upset and dismayed about the diagnosis, this felt organic. After some research I read an article in a book which noted that sometimes one of the side effects of immunotherapy can be depression. So there you have it.

I have had some additional symptoms: there are times when it feels like I've got a UTI -- general irritation and discomfort. And I have no idea what to do about it - aside from running to my internist's office to pee in a cup. It's not a day at the beach but if BCG works then it's worth it.

Hope the rest of your treatments are uneventful and you feel better and better...(the break between the first and second series gives your body a little respite).