Sorry to hear another incident of REA. I recall that they thought COVID vaccine and BCG might have screwed up immune responses, but now it seems COVID vaccine is eliminated as a cause. I do not know REA are similar to autoimmune disease in which the immune system attacks the body in various ways. Because BCG works by invoking various immune responses, BCG seems to be the origin of your side effects. It is possible that your doctor - immunologist/urologist may stop BCG for that reason. I would expect they will discuss alternative treatment such as Gemcitabine + Docetaxel i(Gem+Doc) ntravesical chemotherapy. The mechanism of action of killing cancer cells by GEM+DOC is by stopping cell to divide, which leads to programmed cell death (Apoptosis). So, technically, GEM+DOC should not cause REA.
Your situation is classified BCG intolerable if they decide to stop BCG treatment, which is different BCG unresponsive. Since University of Iowa team had published their clinical studies on Gemcitabine + Docetaxel, there have been case studies in different hospitals. A more recent study for longer term follow up with Gem+Doc as rescue therapy for NMIBC by Univ. Iowa team was published in 2022 American Society of Clinical Oncology Journal.
Among 97 patients, there were 35% BCG unresponsive, 38% BCG relapsing, 11% BCG intolerant and 16% unspecified. I do not have access to detail report, so I could not find out the result of BCG intolerant patients. Maybe your doctors have an access to the detail report as reference to determine Gem+DOC is a right choice of the treatment for you. best
Well it looks like my reactive arthritis is back 2 weeks after 5th BCG re-induction. My left knee is inflamed/swollen. Started feeling a little funny Wednesday and noticed some pain golfing Friday - though we won our flight!
Heading to Rochester NY tomorrow to spend week with family. Will ice and see if I can get in to see my previous orthopedist for possible drain and steroids.
Obviously concerned how this may affect future BCG schedule. In my mind it’s worth it if BCG keeps cancer at bay. Wondering what oncologist will say.
If there were recurrence of high risk NMIBC after min. 5+2 then, then patient is qualified for treatments for BCG Unresponsive which have been approved by FDA or on clinical trials. Of course no recurrence or progression is much preferred. In case of T1HG, if T1HG recurs after the 6 weekly induction course, it is also considered as BCG unresponsive..
Treatment for BCG Unresponsive.
Pembrlizumab (Keytruda) immunotherapy – Intravenous injection. FDA approved in January,2020
Oportuzumab (Vicineum) Phase 3 on pause
Nadofaragene firadenovec (Adstilladrin) – GC0070 Approved in December, 2022
N-803 : IL-15 based Natural Killer cells activating drug Phase 3
GEM+DOC are generic drugs, so it can be used for BCG unresponsive, BCG intolerant and even for BCG naïve.
Gemcitabine/Docetaxel and N-803 look most promising for RFS so far.
I heard from a urologist that if patient can complete the induction + 1st maintenance course, the patient would likely be able to complete the entire BCG treatment (27 treatment in total. So the completion of , 5 + 2 or 6 +3 are good start.
Did your oncologists either at MSK or Moffit suggest prescribing Ofloxacin - fluoroquinolone antibiotics to reduce side effects you are experiencing? Ofloxacin is the only antibiotics which was clinically tested (2006) antibiotic to reduce side effects of BCG treatment. Dr. Ashish Kamat of MD Andersons seems to prescribe Ofloxacin to every BCG treatment. Ofloxacin is orally taken at 6 hours and at 12 hours after BCG instillation. The rationale is that all necessary immune responses are obtained after 6 hours of BCG instillation, so it is okay to kill BCG bacteria which are still in the bladder, also there were no difference in efficacy between Ofloxacin group and placebo group. Below is the link to the article on Ofloxacin.
Glad to know it is subsiding. Did you take any medicine such as tylenol or motrin to ease the pain and spasm?
Positive outcomes I see are that BCG this time has not caused reactive arthritis, and you have completed the induction part of so called adequate BCG is 5 or 6 weekly induction + 2 or 3 weekly 1st maintenance treatment . I guess you and your urologist will decide if you take 2 weeks break or 1 week before the 6 BCG.