My husband has the opposite problem He was treated successfully with bcg for bladder cancer and he has been clear for 6 years Following blood appearing in his urine a couple of months ago a tumour was found in his ureter Kidney and ureter  removal  not an option as kidney on tumour free side has low function due to previous  kidney stones Consultant reluctant to do anything  other than monitor and laser recurrence whilst it remains  in ureter but it will at some stage get out and the treatment will be palliative 

Would you let me know what treatment you have had and the details of the trial

Good luck with you future bladder treatment 

best wishes 

Wilbert

Hi Wilbert

I only have a single functional kidney.

After surgery to remove tumour my treatment was chemotherapy using gemcitabine and carboplatin over 4 sessions.

The trial was POUT and you can find details online by downloading article from the Lancet. It's a bit technical but contains interesting survival statistics.

Hope you will find something useful in it.

Mofski45.

Hi Wilbert

I only have a single functional kidney.

After surgery to remove tumour my treatment was chemotherapy using gemcitabine and carboplatin over 4 sessions.

The trial was POUT and you can find details online by downloading article from the Lancet. It's a bit technical but contains interesting survival statistics.

Hope you will find something useful in it.

Mofski45.

Thank you so much I'll have a look

vest wishes

Wilbert 

Hi 

I am 55 year old woman and in Jan thought I had aww infection 

turns out was a tumour in ureter so in April had tube and kidney removed as kidney was not working. 
I can't find anything hardly on TCC it's totally freaked me out. 
mom now recovered so well from op but as stage 3 high grade ( margins were clear ) chemo suggested. We were told to look at pout trial. 
I am starting on Friday the same 3 months and same 2 chemos. How were you on it. ? I'm dreading it as I feel and look so well. But if it helps prevent return ? Although bladder I think is different isn't it ? I had mitomycin chemo into bladder a week after op. Need cystoscopey every 3 months. Consultant said likely to return in bladder. Any info gratefully received. Thanks 

Hi Waspy,

I was lucky to have only a few side effects during chemo.

I'm 77 and my oncologist expected I might find the treatment difficult as the chemo be quite aggressive for the body.

The only serious one was acid reflux and I had to be checked out at local A&E.

Given medication and problem solved.

Other side effects were bad constipation and extreme tiredness. I completed treatment end of January but still have tiredness. Think it's probably CRF (cancer related fatigue).

I had great expectations based on the POUT trial and was very happy when oncologist said I was cancer free. Unfortunately, I was quickly disappointed as first telescope check after chemo showed small bladder tumours.

Having discussed this with two consultants it seems that ureter tumours are very aggressive and there is a reasonable risk that bladder cancer will occur.

Your oncologist should be able to give you more advice/info on this.

I'm looking ahead to my mitomycin sessions and hope they work. 

Try not to focus too much on the chemo side effects you might find them much less daunting than you think.

One of early worries was I don't like cannulas and I was really pleased when the nurses immersed my hands in a basin of warm water to identify the best veins to use.

It was almost completely painless after that.

Let me know if you want any more info on anything.

Mofski45

Hi. Thanks so much for replying. It's good to hear from someone with same condition. 
When I had my 6 week check my consultant shocked me by offering chemo as was never mentioned prior but same as aggressive and likely to reoccur so offered. Kind of got my head around it now. Feeling so well I just want to carry on with some work etc. guess I'll have to wait and see. It's only 9 weeks since kidney and ureter removal and I ran 5k in race for life today. She also told me likely to return in bladder 50-50 chance. 
so same as you I think. Good luck. 
did you loose hair ? 

Hi,

After yesterday's post I remembered a few more side effects which you may experience.

Frequent periods of insomnia, at one point I was given sleeping pills. Only for a short time.

I developed mild peripheral neuropathy which meant I lost some sensations in soles of my feet and developed an ungainly walk.

This might be important for you from a running point of view. 

I didn't lose hair, probably because I didn't have a lot to start with!

What did happen was my eyebrows turned dark brown and my grey beard developed black streaks.

Hope chemo won't be too difficult for you.