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Curious About Transition From BCG to GEM/DOCE

Posted by brian14 @brian14, Jul 27 5:51pm

Hi, I have had 12 BCG treatments. Numbers 1-10 went very well with only the typical side-effects for 48 hours afterward. Treatment #11 resulted in a high fever (102.5), 20-30 minute frequency and 7 days of UTI symptoms. I reported it to staff and went for Urine Culture and it came back negative. I was cleared for treatment #12 everything went downhill from there. Fever of 103, an infection treated with antibiotics and after one week, pain and swelling from pelvic area to knees and feet. I met with Urologist/Oncologist and he suggests that BCG is working too well and needs to stop. He suggests transitioning to GEM/DOCE for continued maintenance. I'm wondering if others may have had this experience and what to expect from GEM/DOCE. FYI, I'm being treated at Moffitt Cancer Center in the Tampa Florida area. Thus far, staff is great, MD is great. Looks like my body wants to be uncooperative at times. Thanks.

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gemdoc25 | @gemdoc25 | Sep 17 9:54am
In reply to @kgborlando "What are the main side effects of the Gem/doce format? I started round 1 of 6..." + (show)
Profile picture for kgborlando @kgborlando

What are the main side effects of the Gem/doce format? I started round 1 of 6 weeks recently. I did the 1 hour Gem introduction in the dr office- laying down-and then the insertion of the doce and I was allowed to leave their office immediately and go home and kept the doce in for the required 1 hour. Does this protocol sound correct? Appreciate any feedback.
For information purposes My BC is low grade stage 0, have had 5 TUBR procedures in last 2.5 years and a 6 week GEM process a year ago. Last TUBR was in March 26 with a GEM 1 hour wash after surgery.

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@kgborlando
I had 5 weeks intro, then I'm on 4th maintenance of Gem/Doce. Your protocol is same as mine, except I stay in clinic for the hour with Doce before I drive 1 hour home.
Had my third cystoscopy last Thursday. Clear, but have to continue 4-weekly instillations to Feb 2027.

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deb2024 | @deb2024 | Sep 18 6:32am

Hi, I had 3 treatments of BCG and then went to gem/doc. Was on this for a year of monthly treatments. Side effects seem to vary with each individual…I experienced fatigue, brain fog at times and lost appetite. I’ve been off treatments for a year and haven’t had any reoccurrence of cancer! I think age and overall physical condition can be a factor with side effects. I would get the gemcitabine instillation and hold it for 90 minutes and then get the doc and head home for a drive of 4 hours. We would stop after 90 minutes so I could empty bladder of doc. I hope and pray you do well with your treatments!

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dks2500 | @dks2500 | Sep 18 10:01am
In reply to @mitsyginger "@brian14 I may have more to offer but first let me say I am not a..." + (show)
Profile picture for mitsyginger @mitsyginger

@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.

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@mitsyginger thanks for sharing your experience. Very helpful. May I ask where you are being treated and had your BCG infusions? Is it a nationally recognized clinic for treating bladder cancer?

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mitsyginger | @mitsyginger | Sep 18 12:36pm
In reply to @dks2500 "@mitsyginger thanks for sharing your experience. Very helpful. May I ask where you are being treated..." + (show)
Profile picture for dks2500 @dks2500

@mitsyginger thanks for sharing your experience. Very helpful. May I ask where you are being treated and had your BCG infusions? Is it a nationally recognized clinic for treating bladder cancer?

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@dks2500 I began with Advanced Urology Institute. They are not NCI. I was there for about 9 months total. When that urologist said they'd never seen a case like mine I got a second opinion at Mayo - Jacksonville and after I was able to get my insurance changed I moved all of my treatment to Mayo. And yes, they are an NCI facility.

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dks2500 | @dks2500 | Sep 19 6:17pm
In reply to @mitsyginger "@dks2500 I began with Advanced Urology Institute. They are not NCI. I was there for about..." + (show)
Profile picture for mitsyginger @mitsyginger

@dks2500 I began with Advanced Urology Institute. They are not NCI. I was there for about 9 months total. When that urologist said they'd never seen a case like mine I got a second opinion at Mayo - Jacksonville and after I was able to get my insurance changed I moved all of my treatment to Mayo. And yes, they are an NCI facility.

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@mitsyginger good move going to Mayo. Thanks for the update.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 5 days ago
In reply to @kgborlando "What are the main side effects of the Gem/doce format? I started round 1 of 6..." + (show)
Profile picture for kgborlando @kgborlando

What are the main side effects of the Gem/doce format? I started round 1 of 6 weeks recently. I did the 1 hour Gem introduction in the dr office- laying down-and then the insertion of the doce and I was allowed to leave their office immediately and go home and kept the doce in for the required 1 hour. Does this protocol sound correct? Appreciate any feedback.
For information purposes My BC is low grade stage 0, have had 5 TUBR procedures in last 2.5 years and a 6 week GEM process a year ago. Last TUBR was in March 26 with a GEM 1 hour wash after surgery.

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@kgborlando, welcome. You may be interested in this related discussion:
- Gem/Doce (gemcitabine + docetaxel): What side effects did you have?https://connect.mayoclinic.org/discussion/side-effects-with-gemdoce-treatments/

How are you doing?

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