Curious About Transition From BCG to GEM/DOCE

I'm also being treated a Moffitt. Had 5 inductions and have now had 4 maintenance Gem/Doce.
Apart from frequency and some urgency, it's an easily managed treatment with minimal discomfort and side effects. I did not have BCG.
Good luck.

Thanks for your reply. I am hopeful for a similar experience to yours. I have done a little research on Gem/Doce and found that there are generally less severe side effects compared to BCG. I wish you the best of luck as well.

Hi Brian, your situation sounds familiar. I too had 12 BCG (6+3+3) treatments. After my fourth I developed extreme UTI type symptoms; frequency: 3x/hour, urgency and urinary pain: level 7-9, though my fever had only been 100.8. Urine Cultures were negative for bacteria. Urology Oncologist urged me to continue with BCG. After 18 months of more BCG and pain, I told my doctors that I was refusing further BCG treatments and requested a consult with an Infectious Disease doctor. The ID doc tested and diagnosed me with an active m. bovis infection, attributed to BCG, and I began a nine-month antibiotic treatment. Two months into that regimen my symptoms improved greatly, and my urology oncologist started me on Gem/Doce. I had a lot of trouble with the Gemcitibine at first. The process was to receive the Gemcitibine, sit in the waiting room for the suggested “hold” time of 60-90 minutes then go back in to receive the Docetaxel. Unfortunately, after 20-30 minutes with the Gemcitibine I would be shaking uncontrollably. The Docetaxel was not nearly as difficult. On my fourth treatment the nurse reserved the treatment room so that I could lie on the bed during the Gemcitibine hold time. She speculated that the prior active infection had left my bladder floor extremely sensitive and hoped that lying on my back may help. The nurse was right, lying on my back helped immensely and I held both Gem and Doce for the suggested times without trouble. I did 18 months of BCG and 18 months of Gem/Doce. Finished that 8 months ago and have had clear cytology and cystoscopy since then.

@mitsyginger
Hello and thank you so much for your reply. It appears as though we had near-identical responses to BCG at the same point in our treatment schedule. I am so impressed that you contacted an Infectious Disease MD (I was unaware of that specialty.) Like you, I was in extreme pain after BCG 11 and 12. The frustrating part for me was being told that I had no infection because my cultures showed no infection. I didn't mention it in my earlier post, but after a week of extreme pain, I went to an Urgent Care and was given a prescription for Keflex. The pain was gone after 2-1/2 days. So, my response to "no infection" is "why did it go away after 2-1/2 days of antibiotics?"
After one month, I still have joint swelling and difficulty flexing my knees.
At a cysto one month from now, my Urinary Oncologist are going to discuss the best way to proceed. I plan to follow your lead. I know that gem/doce can have its own challenges, but I never want to repeat my last experience with BCG.
Thank you again for sharing your personal experience. It really helped me to understand my own experience and how to plan moving forward. Your proactive and thoughtful way of directing your treatment produced a wonderful result. I'm very happy for your clear cytology and cystoscopy and I hope it always stays the same.

@brian14
I may have more to offer but first let me say I am not a medical professional nor alluding to diagnose what you are experiencing. As I said earlier, it does sound familiar. After suffering for many months I came upon a group of fellow suffers of BCG Adverse Events (BCG Cystitis, Reactive Arthritis, joint swelling, etc.) over on the Inspire.com website. One urologist who is often cited there is a doctor by the name of Michael O'Donnell of the University of Iowa. He wrote a paper titled "Infectious Complications of Intravesical BCG Immunotherapy". You may benefit from searching his name on the Inspire website and reading what his patients report. However, if you are like me you will want to download a copy of his paper from the website called "UpToDate". That website is a clearinghouse of clinical research papers. You would need to pay to subscribe in order to download it. I think it was $20 when I got it. Best $20 I ever spent though my doctors did not share my suspicion that I was suffering from a BCG adverse event. Many doctors do not think it is possible. Dr. O'Donnell states that it is very rare but does occur. I had to advocate strongly for myself to see an ID MD.
Also, the bacteria I tested positive for is devilishly difficult to detect. My Uro-Onco and PCP were extremely surprised that my ID doc found it. Many people on Inspire will attest that their ID docs made a presumptive diagnosis and treated them empirically based upon their symptoms because they believe there is a strong possibility of false negatives when isolating m. bovis.
Best wishes for good health.

@brian14
BTW...where I type Adverse Events I should have said Adverse Effects. There is a difference lol.
Best!

Thank you for sharing your research and its sources. I will follow-up.
I understand that while there are similarities to our treatments and reactions to BCG, that each patient is unique. Because my Urinary Oncologist stated that he had not heard of my reaction before, it caused me to reach out to this group....hoping for any similarity.
Part of the reason that I need to quickly educate myself is that I will be forced to leave Moffitt Cancer Center as of year end, after one year of treatment. They are eliminating all forms of Medicare insurance except Original Medicare and Medicaid. I was diagnosed 3-1/2 years ago but my bladder produced the first high risk, flat tumor CIS one year ago. At that time, I moved records from my Urologist to Moffitt. As of January 1, I will likely return to my original Urologist (a wonderful physician with a great staff that I felt guilty leaving.)
In preparation for that day, I'm trying to do my homework. A bonus, in my mind, is that my original Urologist always allowed time for a couple questions or a second opinion on the value of research that I had done.
Your willingness to share your research is very valuable to me and I appreciate it.