My journey with Bacillus Calmette-Guerin (BCG) treatment

Greetings all. First I want to thank everyone for sharing their journey here, and for their suggestions. I have finished my second TURBT, and am scheduled for my first (of six) BCG treatments in two weeks. My concern at this point is the side effects of this treatment. My research tells me that they vary wildly, and usually get more severe in later treatments. One poster here mentioned taking Buscopan for cramps and contractions and then Panadol Osteo for pain after. Is anyone else familiar with these drugs? Thanks!

@dks2500 I start BCG treatments next Thursday. I’m wishing you the best and will keep you in prayer. Looks like it’s gonna be a long journey. May God be with you and your family best wishes.

@divey it is easy to get depressed dealing with cancer. Bladder cancer especially likes to return. My husband was a BCG failure and was then offered Keytruda which also didn't prevent recurrence. This has been in the past 6 years, and since then there are new drugs and combinations to try. My husband elected a radical cystectomy with neobladder after 3 years of attempted control and is content with his decision. It looked like the best way to get a cure with his highly aggressive muscle invasive cancer.
As for the insurance fiasco, that is total frustration. You can request for your doctor to do an appeal when a treatment is declined. It is sad that our medical professionals must waste their time dealing with insurance decisions made my non-medical uneducated personnel. Keep treading water as there are new treatments being approved and more research being done. Look for the things that make you happy and have gratitude for them every day. It helps to keep the attitude positive. Though it feels like your life is on hold as you battle cancer, you really must concentrate on keeping something positive in your life, no matter how small.
I hope someone who has experience with this treatment will comment here.

@sepdvm How’s your husband??

Has anyone ever heard of a
pretzel treatment (INLEXZO / TAR-200? My surgeon spoke about this after my second surgery as an option if BCG treatments fail sometimes I get so depressed other times I’m hopeful. I did some research and someone told me that 50% of BCG treatments don’t work. I went to Sloan Kettering. They told me even if they get all the cancer they’re 70% chance it’s gonna return. I guess I just have to exercise my Faith. I still can’t understand why treatment treatments that can work are so expensive or are not covered by your insurance. Sorry to be Dougie downer.

I just had my first treatment yesterday. I was so overwhelmed going in but I have to say everything went very smooth. I live 45 minutes from the clinic so my first 15 minutes on my stomach I stayed there then I was able to roll side to side in the vehicle on the way home. I have had no issues thus far. We live in the country so we have a private septic system which was a huge worry for us, with the amt of bleach we had to use. Using a hat worked out. I know hearing good news on here is helpful. Good luck and prayers to all.

@sws56 thanks so much for sharing this! I have my first BCG treatment next week.

Greetings all. First I want to thank everyone for sharing their journey here, and for their suggestions. I have finished my second TURBT, and am scheduled for my first (of six) BCG treatments in two weeks. My concern at this point is the side effects of this treatment. My research tells me that they vary wildly, and usually get more severe in later treatments. One poster here mentioned taking Buscopan for cramps and contractions and then Panadol Osteo for pain after. Is anyone else familiar with these drugs? Thanks!

@dks2500 I am having my 2nd TURBT? to make sure not in bladder muscle 7/20. Had a tumor removed 2 weeks ago. Pathology states not in muscle but I guess this is part of the protocol. If they decide on BCG I will also be getting immunotherapy IV once a month for a year. God bless you. Very strong prayers sent to you.