Suspicious scope worried about non-BCG options

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!

And yes it does sound like Ta HG.

Thank you Joe!  My BCG joint (reactive arthritis) issue was most likely due to combination of BCG and first 2 COVID vaccines before and after last 3 weeks of BCG in February 2021.  That’s what the immunologist at MSK said.  But my oncologist scoped my and said no more BCG and I believe it was because of the damage to bladder wall.  

He had gone from full Tokyo dose to half.  Then for my last two 1/3.  But I remember asking to verify 1/3 dose and nurse read label and it was still 1/2 - now I know I should have stopped it right there.

so one of my questions will be about a much lower dose given time since my last treatment.  My oncologist at Moffitt has scoped me 4 times then another TURBT so I’m thinking he will have good idea of the shape my bladder is in and whether or not I’m a candidate for any irritating treatment or not.

This go around hasn’t been easy.  When he told me let’s go to 3 month scopes in June I figured something was up.  Then again in September and in December he first said let’s do biopsies.  I thought I heard suspicious area.  Then after first of Year hearing there is a tumor then having to postpone TURBT due to COVID.

Add to that it’s a new MD for me and I miss the atmosphere of MSK - though Moffitt is excellent as is my MD it is another change.

But it is what it is and I need to let things take their course.  My desire to know everything NOW gets in the way.