Protocol for maintenance therapy with BCG

Posted by lannak @lannak, Jul 22 9:59am

I’m very curious what the protocols are for maintenance therapy with BCG after one has been in the 6 month treatment phase and had a clean cystoscopy. Thank you all in advance

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fmfran | @fmfran | Jul 23 4:34pm

I’m following this. I’m a little behind your timeline.
Fran

lhatzenbuhler64 | @lhatzenbuhler64 | Jul 23 5:21pm

I finished my first 6 treatments in May and had a clean scope completed the end of June. I assumed I would be seen for another scope in 6 months or a year. Unfortunately, that isn’t what is happening. I started treatment again today as preventative and will continue treatment for at least a year. I will have 3 treatments and then 6 weeks off and another scope. The pain today when urinating is the same as it was prior to any treatment.

lannak | @lannak | Jul 23 6:31pm

In reply to @lhatzenbuhler64 "I finished my first 6 treatments in May and had a clean scope completed the end..." + (show)

Congratulations for having a clean scope! I'm still waiting for my clinic to set me up August treatment days. I'm hoping that my pain and bleeding goes back to pre treatment levels. The last 3 treatments in May were severe UTI like symptoms. Also I don't know if the severity of symptoms are dose dependent. I started out getting either 1/2mg or 1 full mg/treatment. The clinic has decided that everyone now will get 1/3 of a mg to deal with "the shortage"

talltxlady | @talltxlady | Jul 24 7:42am

I had to do 3 years of BCG maintenance for my high grade bladder cancer.

lhatzenbuhler64 | @lhatzenbuhler64 | Jul 26 2:06pm

In reply to @talltxlady "I had to do 3 years of BCG maintenance for my high grade bladder cancer." + (show)

May I ask what stage your cancer was at when you first started treatment?

talltxlady | @talltxlady | Jul 28 8:39am

Superficial, high grade t1

Sue, Volunteer Mentor | @sepdvm | Jul 29 12:05pm

My husband had a recurrence during the maintenance phase of BCG. We were told that it is most common to relapse during the 1st 6-9 months of maintenance therapy if you are a BCG failure. He had a muscle invasive highly aggressive bladder cancer and an initial partial cystectomy prior to these treatments.

quahog | @quahog | Jul 30 3:15pm

I had a NMIBC and TURBT in December’24 and then six BCG treatments ending in April. Cystoscopy in may showed no reoccurrence and five biopsies showed no CIS. My urologist however suggested a BCG maintenance program a three, six and twelve months. Just finished the first three treatments at three months and it was very uncomfortable. I am getting progressively more sensitive to the treatment and the resulting side effects are getting significantly more troublesome. Bleeding, burning while voiding, urgency at very short intervals, pain in the lower abdomen, muscle and joint pain, headache, and nausea. These last longer and longer after each session with the last one lasting over two days. I’m scheduled for a cystoscope in late August and if clear, I think I’m going to petition strongly for regular cystoscopy in place of the BCG maintenance plan. Has anyone else a similar experience.

buri | @buri | Jul 31 5:30pm

I am starting my first bcg in Monday. How did the first 6 go?

dldinsd | @dldinsd | Aug 2 3:13pm

In reply to @quahog "I had a NMIBC and TURBT in December’24 and then six BCG treatments ending in April...." + (show)

@quahog I'm about on the same schedule as you are. Agree that with each BCG treatment the side effects are getting worse (urgency & burning especially). My PA said that BCG has a cumulative effect. Doctor hasn't said how many treatments or how long the treatment will go on. Guess it''s better than the alternative.