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Urothelial adenocarcinoma

Posted by mpuap @mpuap, Jun 3, 2023

I have mucin producing urothelial adenocarcinoma of the prostatic urethra with Mets. Preparing for round 3 of FOLFOX. Does anyone have any experience or knowledge with this rare cancer?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 11, 2023

Hi @mpuap, it is so hard to find connections when diagnosed with a rare cancer. There are several members talking about bladder cancer, but it looks like you're in an exclusive club of the rarer type of bladder-related cancer Adenocarcinoma that begins in cells that make up mucus-secreting glands in the bladder or in your case, the prostatic urethra.

While the cancer is rare, there are other members who have had FOLFOX chemo for colon and for esophageal cancers. See these related discussions:
- Has anyone undergone the folfox chemo treatment? https://connect.mayoclinic.org/search/discussions/?search=FOLFOX+
- Injections for low white blood cells after round 7 of folfox https://connect.mayoclinic.org/discussion/injections-for-low-wbc-after-round-7-of-folfox/

And this discussion
- Post-nephroureterectomy for UTUC - now abnormal bladder cells https://connect.mayoclinic.org/discussion/post-nephroureterectomy-for-utuc-now-abnormal-bladder-cells/

@mpuap, how are you doing on FOLFOX? Was your diagnosis discovered after spread had already started?

REPLY
1 reply
mpuap | @mpuap | Jun 26, 2023
In reply to @colleenyoung "Hi @mpuap, it is so hard to find connections when diagnosed with a rare cancer. There..." + (show)
@colleenyoung

Hi @mpuap, it is so hard to find connections when diagnosed with a rare cancer. There are several members talking about bladder cancer, but it looks like you're in an exclusive club of the rarer type of bladder-related cancer Adenocarcinoma that begins in cells that make up mucus-secreting glands in the bladder or in your case, the prostatic urethra.

While the cancer is rare, there are other members who have had FOLFOX chemo for colon and for esophageal cancers. See these related discussions:
- Has anyone undergone the folfox chemo treatment? https://connect.mayoclinic.org/search/discussions/?search=FOLFOX+
- Injections for low white blood cells after round 7 of folfox https://connect.mayoclinic.org/discussion/injections-for-low-wbc-after-round-7-of-folfox/

And this discussion
- Post-nephroureterectomy for UTUC - now abnormal bladder cells https://connect.mayoclinic.org/discussion/post-nephroureterectomy-for-utuc-now-abnormal-bladder-cells/

@mpuap, how are you doing on FOLFOX? Was your diagnosis discovered after spread had already started?

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I have the expected neuropathy,anemia, loss of appetite and tiredness. CEA did drop from 26 prior to FOLFOX to 15.4 after 3 rounds. Labs and CT this Friday to check on progress. Had surgery last week to stabilize L-5 vertebrae which fractured as a result of Mets. They cleaned out the necrosis and filled the vertebral body with glue to stabilize. Certainly provided significant pain relief. My prognosis is poor so I’m pushing for adding a checkpoint inhibitor plus Ivermectin to augment immune response. Also, on the off week of chemo I’m taking Curcumin, Lycopene, Ursolic acid, berberine and quercetin stopping one day before next round of FOLFOX. These all have antioxidant properties that could interfere with the oxidative damage from oxaliplatins mechanism of action. However oxaliplatin is only active for a few days so keeping the two separate should be ok in my mind. Would appreciate hearing from others.

REPLY
mpuap | @mpuap | Nov 23, 2023

Update. After 3 months of Keytruda, Ivermectin, Xeloda and some nutraceuticals my CT scan shows all Mets are gone and primary tumor in prostate has decreased in size from 4.2cm to 2.4cm. Very pleased so far with this combo. Has anyone used the high dose I.V. Vitamin C with doxycycline and azithromycin for stem cell eradication?

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