Delayed side effects with Mitomycin

1 year 2 months ago - 1 year 2 months ago #61474 by HTXfire
Replied by HTXfire on topic Delayed side effects with Mitomycin
My clots were large in terms of passing through male parts. It was the worst pain I’d ever experienced. It got better within weeks but in the worst of it I would’ve done anything to urinate pain-free. I feel for you! It does get better though once your bladder calms down. I attached a picture of my bladder inflammation. The picture on the top left is of a healthy bladder. The other three are what mine looked like after I had the flair up 2 months after Mitomycin instillation. Hope this helps. 
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1 year 2 months ago #61473 by JigStep
Replied by JigStep on topic Delayed side effects with Mitomycin
Kirranaz: Nine weeks after a TURBT and about 3 days after a 2nd round of BCG, I woke up with a full bladder and peed purple urine/blood and clots like a machine gun. I tried drinking water to flush, but that didn't work. Bleeding continued and eventually my bladder filled with a lot of clotted blood and I couldn't pass anything. Went to the emergency room and was admitted for cauterization of the tumor resection site. I'd get assistance sooner than later if elimination becomes an issue. Stu

7/18 Gross hematuria; 8/18 TURBT: papillary urothelial carcinoma, LG, T1; 12/18 TURB: benign urothelial mucosa, cystitis; 9/19 TURBT: papillary urothelial carcinoma, HG noninvasive; 6/20 TURB: NED, inflammation; 10/21 TURB. NED, inflammation.

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1 year 2 months ago #61472 by Kirannaz
Replied by Kirannaz on topic Delayed side effects with Mitomycin
Hi I'm having exact same problems. Hence why I'm here on this page.2 month after started bleeding clots and utility symptoms but test came back negative. So close to going a n e tonight. Did you have large clot or was it something else?

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4 years 5 months ago - 4 years 5 months ago #58227 by NelsJenn
Replied by NelsJenn on topic Delayed side effects with Mitomycin
Dear Members,

I was given Mitomycin after my first TURBT. I had a terrible experience with bladder pain and I still don't know if this pain was due to the TURBT, the drugs to manage my bladder control, or the catheter that I was required to have in me for one week.

I decided to switch my urology team to UCSF for my second TURBT, since they utilized blue light technology (less scraping the walls of the bladder blindly) and they believed in removing the catheter immediately after the TURBT procedure. ALSO, they didn't use Mitomycin and I was told there was not any empirical evidence to prove its effectiveness.

UCSF is recognized for their medical care in bladder cancer and bladder cancer research. Their knowledge and patient care is outstanding, I believe.

I am sharing my experience to generate awareness among this community. Does anyone else have an opinion (based on experience) or qualified information on the effectiveness of Mitomycin-C?

Regards, Nelson.

Bladder Cancer - Non-Invasive 2019
High Grade - T1
2 TURBT - 2019
9 BCG Infusions - 2019
Ureter Tumor Discovered - 2021

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4 years 8 months ago - 4 years 8 months ago #57729 by JigStep
Replied by JigStep on topic Delayed side effects with Mitomycin
HTXfire:
At November cystoscopy following my initial TURBT, doc saw "3 or 4 red patches" around the initial resection site. (Of course this news didn't help my state of mind.) Had a second TURB with intravesical Mitomycin in December, although no catheter. Doc resected one site and biopsied another; pathologist identified cystitis cystica, but no cancer in tissues. Between weeks seven and nine, following 2nd TURB, started having some discomfort when urinating (particularly getting flow started), with minor bleeding and passing small clots. Sounds like your reaction is much more severe, but timing seems similar. I don't know if my experience was a reaction to Mitomycin or just the healing process. At March cystoscopy, doc says "it's still healing in there." He'll be taking another look-see soon. Hope your symptoms diminish quickly. Stu

7/18 Gross hematuria; 8/18 TURBT: papillary urothelial carcinoma, LG, T1; 12/18 TURB: benign urothelial mucosa, cystitis; 9/19 TURBT: papillary urothelial carcinoma, HG noninvasive; 6/20 TURB: NED, inflammation; 10/21 TURB. NED, inflammation.

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4 years 8 months ago #57727 by Johno100
Replied by Johno100 on topic Delayed side effects with Mitomycin
Similar to you , tumour removed six weeks ago , non invasive grade 3 , bleed a lot , had a UTI , catheter in and out twice , stopped seeing blood around ten days ago, still seeing the occasional scab , doc said its normal , due to start BCG in a week , doc is also sending me for a thorax CT scan to be on the safe side. stressful times.

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