Mitomycin

Hi Tweenies . Never had this treatment myself but know it is designed to help mop up any rogue cells and help prevent recurrences. Many posts here on the subject. Some people have varying types of side effects while others sail through it. I am sure others will be along to share experiences. I had a lung nodule and was told they are quite common. They just monitored it for me and it has never changed in years. Best wishes.

Good afternoon Tweenies. I had 6 mitomycin in July last year and follow up cystoscopies . The first cystoscopy was clear , the second showed some red patches. I had a TURBT two weeks ago and await results of biopsy. I’ve had no side effects in this time, best wishes, John.

Hi Tweenies, I had my 2nd TURBT Sept and finished my 6 Mitomycin the week before Christmas. I had no major side effects to the treatment because it goes direct into your bladder via a catheter, it doesn’t get absorbed into your system as it would if it went into your blood stream. The only thing I noticed was my palms were a bit itchy and went a bit dry, but that’s a normal thing that can happen to some.

It’s more embarrassing than anything else…. And be aware it comes out purple when you wee it out.!!
best wishes

Julia x

Hi, My OH had Mitomycin. It was supposed to be delivered heated, the idea is it is more effective warm. But his bladder wasn't having any, it just spasmed it straight back out. The nurse had to wash him down as it is quite burning on the skin, purply-blue liquid everywhere. So the consultant said just give it cold. He was supposed to keep it in for I think it was one hour. But with each week the time he could hold on got shorter. First a towel and plastic bag on the car seat and complete new joggers on arrival home. Then got tena pants, still a hasty shower to remove the irritant residue. Despite all this, and a couple of 'red patch scares', all that was about five years ago and he has not even had any recurrences. Whether connected or not you must decide for yourself, but I will say we do anyway eat a fairly 'clean' diet, ie mostly organic, not much processed food, and carefully chosen vitamin, mineral and anti-inflammatory supplements, non fluoride toothpaste, no mercury fillings, etc. ALWAYS check with a pharmacist before trying any such.

The original cause of his bc is thought to be anti-epileptic drugs which he needed at high dose and in unusual combination for decades of his earlier life. [I once started using his pee in water on tomato plants, it caused the leaves to grow twisted and deformed, mine didn't...], the used drugs are obviously being stored in the bladder all the time on their way out. His drugs have been altered and reduced as he has got older without further seizures.

Can't say he was aware of any particular side effects other than a bit of tiredness next day, not a problem being retired.

Hope this helps

denby

Hi Tweenies , I've has 4 Turbts , and one nephrouterectomy as the cancer cells spread into my ureter hense a kidney removal. After my 3rd turbt I was given mitymicin , it was OK and I managed to keep it in easily. I did forget once and left it in too long so had pain for a while so don't do this. Unfortunately it didn't work so gad my last Turbt Nov. Was due to have the mitymicin again but warmed up this time as its more effective but today my cystoscopy showed more cancer so awaiting g my 5th turbt. Luckily its all superficial  in my bladder but very recurrent so sadly has become part of my life !