Hi, new here.

Hi RKH40 and welcome to the group. Good to have you on board with your experience. I took a different route to you but we have a variety of experiences here. I know what you mean about the cancer bubble and so this is a good place to talk to others who understand. Best wishes.

Thanks for the welcome

Hi RKH40,Welcome to this friendly group.I hope you will find it helpful.It sounds like you have been through a lot in the last year.I’m sorry to hear you have had bad side effects from the immunotherapy.I hope the steroids help.We have other people here who have neo bladders.I had the op but have a stoma,the recovery was tough emotionally.I think most people have highs and lows following such major surgery.Best wishes Jane

Hi, thank you. The steroids  have made a difference already but its only a week & a bit in so far. Also, told yesterday that I won't be having anymore immunotherapy as toxic reaction has been too severe and could cause much bigger problems if it were to return. Probably like most, was determined to get through all the treatment on offer so outcome is not what I expected but i understand reasons. My 4 doses will have to do!

Hi,That is a shame but I suppose they cannot risk you having an even more serious toxic reaction.Good that the steroids are helping.My partner has had to take them for ulcerative colitis and I had them for Pericarditis.They helped us both so I hope they work for you.Love Jane 

Hello RKH0

Welcome, this is a really nice group.

I was diagnosed with a stage 3 sarcomatoid urotheleal carcinoma , recently removed by radical cystectomy. & ileal conduit. 
I am about to start immunotherapy as currently there is no option for chemo as this particular type is chemo resistant .

Same frequency, every 4 weeks for a year.

The treatment has just been licensed for use.

im sorry to read you have suffered the side effects & hope you make a good recovery.

Will you resume treatment once the steroids are finished.

Wishing you lots of luck with the treatment 

Millmount 

Hi, thanks, unfortunately,  the immunotherapy has been stopped and won't be resumed. The dangers of another similar toxic reaction outweigh the remaining benefits of immunotherapy. The steroids will do their stuff hopefully and I can get on with living with my new friend, the neobladder  I hope your treatment goes well. Best wishes

Hi RKH40,

Sorry to hear you've had a hard time with the side effects of immunotherapy. I too had similar side effects. You may be fine but the steroids seem to make me a little knocky, sharp, snappy. Nothing major but worth being aware of in case they affect you similarly.

Good luck going forward....Del.

Ok, thanks for the heads up.How long did you take them for, I'm on an 8 week reducing dosage course?

The same as you i think. I started with ten a day (all in one go) then eventually down to nothing. We all react differently to medicines and you may well be fine. I just found myself a little more reactive than usual. I was aware of it though which helped. Once i'd finished with the steroids i was fine again.