Experiences with

Mitomycin

I scar up despite mitomycin and drops aren't doing the job of keeping IOPs < 10 as desired. One question:- my instructions tell me to use my drops on the day of the procedure. I would have thought it would be more useful to judge the degree of surgery knowing the "natural" IOP level.

July 23 Jan 24 bleb needlings .Feb24 steroid induced cataract occluded the vision IOP 26 .March 24 cataract removed and further bleb needling and mitomycin C . 2 weeks later IOP raised further bleb needling and avastin .2 weeks later this was repeated .

I’ve been having EMDA with Mitomycin treatment for the past few months ( initially once a week x 6 then 3 months break then monthly x6). On Monday I had a cystoscopy and NMP test and I’m NED. Very happy as this makes a year tumour free. Yay. I hope you’ve had good news recently too.

Hi all After my turbt in July I’ve been recommended EMDA with Mitomycin. There was one small tumour TaG1. But it’s my 5th low grade recurrence.

Hi everyone I’ve been having Mitomycin for almost 3 years now and despite a couple of small low grade recurrences have been recommended to stay on it. My 3 years are soon up but as my last recurrence was in July 2019 Ta G1 and G2 I feel it’s too soon to stop.

So there’s no change to my current treatment of Mitomycin. They said the tumour was small and well defined. I’m happy to be home and relieved still hoping it’s the last time it comes back. Onwards and upwards getting fit again after surgery.

The fourth return since 2016 looks like the Mitomycin isn’t working for me. I’m thinking BCG is the next step after the operation on 3 September. Hoping it’s another benign one like the last time 🤞🌻 Hope you’re having a more positive start to the week

Have had tumour removed and awaiting treatment plan possibly chemo using mitomycin into bladder or immunotherapy using BCG Wondererd if options might be limited due to having PBC?

I’m happy to say that there’s no new growth and the path report was NED 😀as the previous one was so small and G1 I’ve been recommended to continue with 3 monthly check ups and mitomycin. A relief I must say as I’d always seen BCG as a last resort.

I’d been on mitomycin monthly for two years after 8X mitomycin kick off. Previous tumours all non- invasive and low grade 2 or 1. Obviously i have to wait for the pathology to know next steps but I’m curious about what others have had. Does the reoccurrence mean BCG or a higher dose of mitomycin?

For chemo during the treatment he used MITOMYCIN-C. He filled my abdomen area with chemo for a long time. After the surgery I was able to get up the next day. I spent about 2 weeks at the hospital then was release to come back to Florida.

I have just had my week five session of my Mitomycin treatment, each week seems harder in respect of side effects of this six week program of treatment Last week I had a lot of blood and debris a couple of hours after leaving hospital, but this week no blood just a dull ache and feeling tired.

Big relief and good to know the mitomycin therapy and plant based diet are working. Best wishes to all and hope you get good news too soon!

The handling and disposal of the mitomycin-C should be per the hospital protocol for chemotherapeutic agents. Care should be taken to avoid contact with unprotected skin.

I am still bleeding, no clots, a week after my TURBT and mitomycin-C. I get pain but no burning when I wee, no temperature. Should I contact my GP or put up with it until I get the four week check up?

So a week after my Cystoscopy I had my first treatment, Transurethral Resection of Bladder Tumour (TURBT) and an intravesical infusion of Mitomycin-C.