Suspicious scope worried about non-BCG options

1 month 3 weeks ago #61601 by joea73
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.

 
The following user(s) said Thank You: Shacky73

Please Log in or Create an account to join the conversation.

1 month 4 weeks ago #61591 by Shacky73
Replied by Shacky73 on topic Suspicious scope worried about non-BCG options
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!!!

T1 Grade 3 with CIS

Please Log in or Create an account to join the conversation.

2 months 2 hours ago - 2 months 2 hours ago #61590 by Shacky73
Replied by Shacky73 on topic Suspicious scope worried about non-BCG options
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!

T1 Grade 3 with CIS

Please Log in or Create an account to join the conversation.

2 months 3 hours ago - 2 months 3 hours ago #61587 by Alan
Shacky. My apologies. I have read too many threads and forgot you had complications making your system nonresponsive/unable to take BCG. Joea's response is on the spot and he is an unbelievable source of great info and research. I remember mitomycin has also been used in the past as an agent as another option that I am sure your URO is aware of.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

Please Log in or Create an account to join the conversation.

2 months 11 hours ago #61577 by Shacky73
Replied by Shacky73 on topic Suspicious scope worried about non-BCG options
And yes it does sound like Ta HG.

T1 Grade 3 with CIS

Please Log in or Create an account to join the conversation.

2 months 11 hours ago - 2 months 11 hours ago #61576 by Shacky73
Replied by Shacky73 on topic Suspicious scope worried about non-BCG options
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.

T1 Grade 3 with CIS

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne