Suspicious scope worried about non-BCG options

Shacky73

We all were looking for your cytology result too.  They had collected your urine sample, right?
I hope you are a football fan. NFL playoff starts soon and ample of previews by analysists will be broadcasted till then.
Hope they will entertain you to help you mind off from another waiting.  

I had to reschedule biopsies due to COVID.   Now scheduled for 1-17.  In meantime I was looking for my cytology results from December visit/scope.  Sent note to MD asking if results came back and received following:

We didn't order cytology since you had a tumor that we know needs a biopsy.

That will wake you up!!!  I was told there was suspicious area not tumor.  May be semantics but felt like I got hit with a right cross.  

Yes immunologists and orthopod felt it was reactive arthritis not BCG in the joint.  

orthopod said the inflammation would have been exacerbated by steroid had it been actual bacteria.  

Thank you so much for your insights!!!

Happy Holidays and Merry Christmas!

Shacky73,

Thank you for sharing more detail experience of your BCG treatment.   I am glad you are being treated highly regarded cancer centers like Moffit and Memorial Sloan Kettering.  

That sounds like really bad reactions from BCG treatment.   I know a fellow who has rheumatoid arthritis has very bad flair which required hospitalization  after the 4th dose in the initial 6 weeks treatment.   His urologist stopped the treatment and he has not received BCG treatment over one year. Luckily,  he has not had recurrence so far.    Then he also had bad flair after the 1st dose of Covid-19 vaccination and has not taken the second shot. 

Many patients have been receiving BCG also get the vaccine for COVID-19 during BCG treatment.   I find different hospitals have different protocols.  Someone in this site said at MD Anderson says its okay to have BCG two weeks after the vaccine.  Another hospital says one week apart is enough.     But they don't experience as severe side effects as you have had.   

Anyway, you are in hands of very good hospitals,   and that is a good thing.

Incidentally, this is how two BCG gurus, Dr. Donald Lamm of  ex University of Arizona and Dr. Michael O'Donnell's  way of dealing with the side effects with BCG. 

Dr. Lamm was the chief investigator of the clinical trial which had shown 6 weeks induction + 3 years of maintenance protocol improved recurrence and progression of high risk NMIBC.  His approach in dealing with side effects is to give very low dose the patient experience minimum side effects, then raises the dosage which patients can tolerate.   So, he was the first one to recommend even 1/100 and try to the whole BCG treatment protocol.  Note that only 16% of patients who participated the clinical trial were able to complete the whole BCG treatments due to side effects.

Dr. Michael O'Donnell of University of Iowa does not offer usually the 3rd year maintenance.  He does not think the benefits from the third year is small and because side effects tend to accumulate such that the longer BCG treatment continues, the harder severe side effects patients experience, he thinks the side effects from the 3rd year maintenance would not justify experiencing side effects.

Dr. Ashish Kamat of MD Andersons says 6 weeks + 3 years maintenance will  give the best befits. He says if patients side effects are managed well, 90% of patients should be able to complete the BCG treatment.   One of his distinct approach is to prescribe Ofloxacin every BCG treatment.  Ofloxacin is an antibiotics and a small clinical trial found it would reduce side effects without affecting the efficacy of BCG treatment. 

 pubmed.ncbi.nlm.nih.gov/16890660/#:~:text=Conclusions%3A%20Prophylactic%20ofloxacin%20decreased%20the,primarily%20associated%20with%20patient%20dropout.

Have your doctor mentioned that immune response, especially T-cells which were invoked by BCG are attacking joints like arthritis ?

Joea73

thank you so much for all that info!  My last 2 three week Tokyo BCG were at half dose.  My MD at Sloan did say they could go down to 1/10.

The last two were extremely painful.  The last had me in fetal position for couple hours.

Then a week or 2 later my left knee swelled up.  Drained about 42 cc’s fluid with steroid and it resolved.  About a week after that my right knee swelled and also had to be drained + steroid.  Then about 10 days later my right elbow swelled and had to be drained + steroid.

My orthopedist said if it was BCG in the knee the steroid would have made it worse.  Sloan did a bunch of tests and got immunologist engaged.  He thought it was likely immune overload so to fact I had COVID vaccine a week before last treatment with second dose the week after.  

Next visit they said no more BCG - history plus scope.  But I think I recall Immunologist saying he would be OK with me getting more BCG.

I would certainly prefer low dose BCG if necessary.  

waiting for cytology and will post when I see it on portal.

Thank you again!!!