Does anyone know of treatments more effective than BCG?

You are so very kind, I really appreciate your sentiment - more than you know.

It’s awful, all of it, but some how we soldier on. So thankful for this very personal forum.

@michzn Hi, I am in Australia, so our government health system ‘Medicare’ pays towards doctors and specialists fees.
For hospital fees we are with BUPA.
The blue light cystoscopy showed no cancer at all. Only 1 hospital in our area uses the blue light - we have 4 hospitals here. I understand that it is rented by this hospital as it is a very expensive procedure and when they give you a date for the procedure you have to be available. I believe it’s only available on certain dates.
Good luck.

Gem/Doce is being used where I live. I believe the results are promising, but there’s not as much research on this treatment as there is on BCG.
I have had seven of 12 monthly treatments plus a six week intense treatment right after surgery
So far so good

I will be having my 4th of 6 initial BCG treatments this week and am concerned that remission only seems to occur in 50% or so of people. Based on what I have read Gem/Doc seems to have much better remission rates, but my doc said he wanted to start with lower risk treatments and if BCG did not work would consider Gem/Doc. The facility I go to is always overcrowded and Gem/Doc requires more space for people to stay in when they are treated, which might also play a role in my docs desire to first do BCG. I also got the impression that Gem/Doc is newer and my doc does not have a lot of experience with it so remains focused on what he knows best which is BCG. I am hoping BCG works.

I'm not a medical doctor, just a patient (high grade, non-muscle invasive). But, here is my understanding from a brief search. BCG is the go-to treatment for non-muscle invasive bladder cancer and, based on a Slone Kettering study I just read, successful responsiveness to BCG, is a prerequisite before going to Dem Dose which is then used along with BCG in further treatment. If you are responding well th BCG, my impression is they won't add in Dem Dose yet. Dem Dose is an abbreviation of a chemical compound introduced into the bladder just like BCG. I should add that I have only been treated with BCG so far. 7 years ago it was found and BCG seemed to work and held for 5 years. But, because of scarcity, the recommended follow-up didn't take place and the cancer returned. I'm with a teaching hospital now that never ran out of BCG. I'm back to a regular schedule that, God willing, will continue it's success.
If there is a urologist/oncologist out there who can enlighten us further on Dem Dose, please do.

@tms3 I think you mean Gem/Doce, short for two chemos , Gemcitabine and Docetaxel, administered separately and sequentially. This treatment has been shown to be as good as BCG, and in some cases better. I am not a doctor, but am a patient having this treatment.
See https://www.cancer.gov/news-events/cancer-currents-blog/2022/bladder-cancer-chemo-effective-alternative-bcg

What about Proton therapy?

My husband is in a very large trial (BRIDGE) to test gemci/doce vs. BCG and hopefully they will have results next year. One cohort has been receiving the standard BCG treatment and the other cohort receives monthly infusions of gemci/doce. Both started with the six weeks of infusions but deviated in the following schedule for gemci/doce which was once a month for two years. Both cohorts had cystoscopies every three months. He will complete the two years of monthly infusions of gemci/doce this August with almost no side effects and no evidence of disease.

@katereut
After having had the induction period of Gem/Doce, after which I was pronounced "in remission," I completed the first, three-month maintenance and had my follow-up cystoscopy Wednesday. All clear, subject to urinalysis result.

@judyhigbee
I'm not a doctor, but radiation or proton beam treatment would probably only be used if the cancer had spread from the bladder to other organs.