HIVEC Heated Mitomycin

Halofan . Hi Angela. HIVEC is something that doesn't come up here very often. We have seen some good results in the past. As it enhances the efficiency of the Mitomycin, I don't know why it is not used more. Hopefully someone with experience of it will be along to help. 

Thanks rily, i was literally about to ask you to bump the post for me to see if i would get any replies ! You must have psychic powers :) 

Hope some one can give me some insight 

much love Angela xx

I had 3 instillations last year in between the bcg treatment. It was easy, much easier than the bcg as they only leave it in for 30 minutes and then empty your bladder and there is no pain with rushing to the loo like with bcg. 

Thanks Bumblebee49. I really appreciate you sharing your experience. I didnt know they could give it in between bcg. I have been stop start stop on bcg due to ongoing long covid and catching covid again. I know that the bcg is the gold standard for nmibc high risk , i have slight concerns that i am missing out on the best chance by not having the bcg, but realistically i dont feel great most days and to get just a normal cold knocks me off my feet, i dont think i would complete the 6weeks induction. I suppose at least the mitomycin  doesnt affect the immune system in the way that bcg does ? 
may i ask why you had the 3 rounds of hivec in between the bcg ?  Are you back on the bcg now ?

much love Angela xx

Hi Angela, my OH was given the heated Mitomycin, as it is considered to be more effective warm. However his bladder simply would not tolerate it warm. Ie it all came straight back out in a nasty spasm and the nurse had to do a big mopping-up-and-washing-down job, as it causes a burning sensation on outside skin as well as presumably depending on the bladder sensitivity, inside. It's got to be strong stuff to do what it does in a fairly short time I suppose when you look at it like that. So when informed, the consultant said just give it to him cold then. Which they did. He still found from week to week he could hold it for less and less time, but it has worked nevertheless.

So I hope this is some encouragement to any who are offered this.

Hi Denby, thanks for this , its good to know all experience good and not so good isnt it? At least I know the cold stuff works as well. I will be well read if thats the next step 

much love to you

Angela x

Hi Angela, I am not sure, if I had stayed at my local hospital I would only have been offered bcg but as I was sent to Guys to discuss bladder removal and I did not want that at all I was offered bcg/mitomycin combination. I have asked about if I would be given Mitomycin again and the nurse said no as studies show it it not effective if you are having the Bcg treatment but no sure how true that is. I WILL CONTINUE WITH BCG MORE COMING UP THIS MONTH. I just hope that what ever they give it keeps this nasty desease away. Good luck with your treatment. 

Sorry didn't mean to do capitals was rushing off to work. 

Hi Bumblebee49, thanks for this, its interesting to me that initially i was told i could only have bcg and now its changed to mitomycin. I will ask if I will ever be offered bcg again , and how much mitomycin i will be given. I assume as you are off to work , you are not getting side effects / minimal which is brilliant. 
Whatever , you are absolutely tight, whatever it takes to get rid of it. Good luck to you too . angela xx

Hi My Partner has had bcg twice and 2 weeks after each of his treatments he gets an infection.

He's now been offered Mitomycin, but his nurse is concerned that following bcg and bladder size reduction, mito may actually reduce his bladder size more, and so we are in a waiting game, as there is no further alternative available treatment. however in the early days he was advised you cannot die from bladder cancer.

. Do any of you have any tips i can give him to keep his moral up. i'm typing this for him as he doesn't have access to internet except via myself. i am also going through an alt cancer treatment, in case yu wonder. thank u