Suspicious scope worried about non-BCG options

The joint issue I had was reactive arthritis.  Much different from BCG getting into joints which I hear happens but rarely.  

two things pointed to reactive arthritis diagnosis:

First it got better after steroids.  If it had been bacterial it would have gotten worse - this from my Orthopedist.

Second the timing of COVID/BCG likely overloaded my immune system - this from Immunologist at MSK.

This  happened during COVID and I used orthopedist in Rochester NY. 

I was priority for COVID vaccine via MSK.  I actually tried to move the COVID vaccine appointment but the vaccine people urged me to keep it as rescheduling would be iffy.

In hindsight I should not have had the vaccine so close to BCG.  

So gland to hear that joints were healed.  I was concerned that you could not do BCG anymore.  Hope it will be smoother journey this time.  Moffitt sounds like a fantastic place to be treated.

My joints were fine after they were drained and steroids kicked in.  No long term issues.

Had my first of six BCG at Moffitt yesterday.  I was anticipating the guttural pain on urinating and bladder spasm for first 6 hours.

I was delightfully surprised that it was nowhere near discomfort from 2 years ago.  I imagine it may get a little worse as I go through 6 week re-induction but I’m starting at a very tolerable level.

Moffitt staff was great!  Private treatment room with bath.  And I stayed laying in bed ( turning now and then.  I think this may have prevented the BCG from collecting at entrance to bladder.  In NY I had to leave as soon as BCG was in bladder.  So walking around the driving car to hotel probably caused more localized irritation and pain.

Moffitt nurses are excellent.  I didn’t even have to ask for them to pinch off end to keep lidocaine in for a minute or two.  My prostate really appreciated that!!!

I am glad they removed the stent.  I hope  you feel a bit more comfortable now.

I was also thinking of BCG again as BCG downgraded tumor from T1HG+CIS to TaHG.  I just was concerned with the type of  side you had experienced.  Are your joints healed okay?   As you mentioned, COVID+19 infection and BCG treatment happening at the same time might have caused  activated too much immune response which could have caused rheumatoid arthritis like condition. This time, since BCG only this time, it may cause less severe side effect next time.  Also, reducing dosage may help.  I read somewhere how Dr. Lamm has dealt with side effect by reducing dosage very low,  then work up higher dosage which the patient still can tolerate.

 

Met with my MD Moffitt today.  He removed stent from ureter.  

went over options:
1. Try BCG again
2. gem/d chemo
3. cystectomy although he felt that’s premature due to superficial nature of latest tumor.

I asked about CG0070.  Have to be within 1 year of last BCG and I’m coming up on 2.  May be option if I have another recurrence after BCG.

As much as I dread the pain of BCG I’m happy I have option of trying it again.

since Moffitt is almost 2 hours drive I was asking about hotel stay for first 2 hours.  They said I would be in private bed for the 2 hour period.  That sounds great as MSK Westchester wanted me gone as soon as they instilled BCG.  Said they couldn’t afford quarantining  bathroom just for me.

I like Moffitt approach!!!

When I was diagnosed with BC in 2019 the local hospital gave me 6 weeks Mitomycin since they could not get BCG during shortage.  It wasn’t very effective.  BCG did the trick!