Thank you for making me feel welcome and answering my question. I will look at the forums and see what I can find. This has happened so fast I still feel like I have been caught up in a tornado and I haven't landed yet.
CindyB just published her experiences with her first BCG on page 5 of the thread just below this on the Forum (topic "just curious if this could mean more.") It is an excellent summary!
From my own experience, the first treatment is not bad at all. After the two hours "holding time" are over, I felt crampish and had to go very often. Had a bit of blood show up also. And the next day I was a bit fatigued. Over the next 5 treatments the symptoms intensified. I did go through the maintenance regimen also (once a week for three weeks every three months.) The longer you go the more pronounced the side effects are (and this shows that it is WORKING!) If they become bothersome, the dosage can be reduced to as much as 10%. By the end I was at 1/3.
It is very do-able, and well worth the effort.
Good luck to you!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
5 years 11 months ago - 5 years 11 months ago#46776by CatherineH
Hello Laurel... I just wanted to say welcome to our forum and that I am glad you found us as you start your BCG treatments. I can't answer your question because BCG was not part of my treatment plan, but I can definitely relate to the being scared part. I think everyone here has felt the same when first hearing those words from the doctor.
There are members here who have very similar diagnoses as yours and have been through the BCG regimen. I'm sure some of them will reply to you, and there are some current BCG threads going on right now as well. If you see a post by another member that interests you, please feel free to join in the thread as well.
Again, welcome. I'm sorry you had to seek us out because of a bc diagnosis, but I think you will find kind people with very helpful information here.
Best wishes... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Hello My name is Laurel, I am a 57 year old woman who was diagnosed with high grade T1 Bladder Cancer on May 29, 2014. I am going for my first BCG treatment on the 20th of August. I was hoping someone would be kind enough to let me know what their first treatment was like and what side effects they had. I do realize everyone's experience is different but I would like to get an idea of what to expect because I am nervous and a bit scared.