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

Just to let you know that my Ronnie did really well on his first BCG. In and out in 20 mins. Did not feel a thing and had no pain after at the loo. So i just hope the next one on Saturday goes as good as the first. He managed the 2 hours and was told to drink after the first hour. We managed to get home in 50 mins so all was well. Thinking of you and David. 

Take care and stay safe

Regards Renny

Good luck tomorrow My husband was originally given an antibiotic called nitrofumantin the side effects were awful sickness migraine type headache feeling really unwell after just 2 doses so switched to straightforward penicillin which was fine and did the John

best wishes

Wilbertx

Hi Wilbert,

Well what a morning, Ronnie took a sample to the clinic and it come back with infection again. So they said we will do another one to check if it is still there and low and behold no infection. So he got his second dose. Ronnie was told not to bother takeing a sample in and they will check in the clinic instead. They gave him a script for guess what, yes the same as you said was given to your husband. But they said they will phone me up and let me know wether they wont him to take them on Monday. I think they are going to have a word with the doctors first. Anyway i was so pleased he got the second dose after all.

I asked if there was anything i could do to change the way the samples could be done over the weekend but they said they had staff working 24/7 and they were so busy trying to catch up after the covid that it was a 3 day wait for a result. Also there having a new lab built at the side of the clinic that will be worked better than the one they have at the moment. So i will leave it at that ( for know )

They have canceled his dye ct scan on his ureter  for Monday. Ronnies cancer nurse said he should not have dye pumped into him while he is having BCG so he will have that in about 5 weeks time. 

Talk about all change 

Take care stay safe

Regards Renny

Hi Renny

So pleased Ronnie got his second dose of bcg.If he has to take the nitrofurantoin try taking it will a glass of milk I was talking to a nurse friend earlier and she said it might help 

BCG treatment seems to stop various things John wasn't able to have his flu jab for a period after he had had treatment 

Hang on in there resilience and adaptability is definitely required

love and best wishes

Wilbert x

Hi Wilber, Thanks for the info on the milk i will bear that in mind if they decide to let him have them on Monday. But if Ronnie has the side affects your John had then i will ask them to change it. Ronnie was at the toilet every half hour when we got home yestaerday. But he did manage to keep the BCG in for 2 hours so that was good and no burning feeling. I am hopeing it calms down today as getting up and down all the time takes it out on him. He will be 82 on the 1/7 so not getting any younger. Thank the lord he is quite fit for his age. 

Well i can hear him getting up. The family call him the 10'0clock man so i will go make our breakefast.

Let me know how your John goes on next week. There's a nurse that works in the kidney department that checks us in at the clinic so i am going to pick her brains next week

A big warm hug from us

Renny

Hi Renny

Glad  things went well

I must admit we rarely get up.before 9 30 am 

Good idea to speak to kidney nurse 

Keep me posted We are having a weekend in Yorkshire (we are in Lancashire ) because John fancied the steak and kidney pudding  at a hotel we used to go to with friends who lived over that way Sadly no longer with us I'm happy as there is a large outlet store nearby and I like to shop but like a bargain  even more 

Take care 

Love and hugs 

Wilbert xx

Well we are in north Yorkshire in Selby. Hope you have a nice weekend in our beautifull Yorkshire and enjoy your pudding. We were both born in West Yorkshire but prefer the North and the village life. Have a good time.

Stay safe

Renny

Wow coincidence We are staying near Skipton off to Harrogate tomorrow and then to Scarborough Scarborough  last minute decision just a night then back home xx

When we go to Scarborough with stay at the Southlands hotel. It belongs to a coach firm called Shearings. We go hotel only and make our own way there but you can get a coach holiday as well and they will take you on trips. Harrogate is nice we go to Betties for afternoon tea. Have a good time and stay safe

Regards Renny

Hi 

more promising news today Has a long discussion  with consultant and John is having 6 weekly installations of mytomicin into his bladder which might kill of the tumour but only slight chance Still worth a shot However it is not aggressive and multi disciplinary team think it has been there for a couple of years after the mitomycin consultant  will wait 6 weeks then have a look with ureterscope and  if he sees anything will laser it off and replace the stent He thinks John has at least 2 years before the cancer escapes and a lot can happen in  that time We are feeling much happier 

Enjoyed our trip to Harrogate and Scarborough 

take care

love

Wilbert x

Well a bit of good news for a change. I am so pleased for you both cos i new you was not looking forwards to seeing the consultant. Theres light at the end of the tunnel and it does sound promising. It's the not knowing that is the worst feeling. Like you say there finding new stuff all the time. I have read on the Mayo clinic web site about the treatment in America. They use it a lot.  Ronnie had his stent out because he was having the BCG so i dont think they will put it back after the treatment as he has to go for the dye CT scan on his ureter to see if it's changed at all. All this waiting is doing my head in. Glad you enjoyed your break in Yorkshire. You should try a few days in the lakes it's beautiful. Thats if you havent already been. Well Ronnie is getting his 3rd dose tomorrow so fingers crossed there will be no infection again. Keep me informed of Johns progress wont you. Stick in there.

Stay safe take care

Love Renny

Well a bit of good news for a change. I am so pleased for you both cos i new you was not looking forwards to seeing the consultant. Theres light at the end of the tunnel and it does sound promising. It's the not knowing that is the worst feeling. Like you say there finding new stuff all the time. I have read on the Mayo clinic web site about the treatment in America. They use it a lot.  Ronnie had his stent out because he was having the BCG so i dont think they will put it back after the treatment as he has to go for the dye CT scan on his ureter to see if it's changed at all. All this waiting is doing my head in. Glad you enjoyed your break in Yorkshire. You should try a few days in the lakes it's beautiful. Thats if you havent already been. Well Ronnie is getting his 3rd dose tomorrow so fingers crossed there will be no infection again. Keep me informed of Johns progress wont you. Stick in there.

Stay safe take care

Love Renny

Thank you 

Good luck tomorrow Hope Ronnie's treatment goes ahead Keep me posted John's treatment also relies on his urine being  being infection free 

Absolutely  agree the waiting is awful does my head in too 

love 

Wilbert x

Hi, just got back from the hospital and they wasnt going to give ronnie the BCG as there was a micro of blood in his sample but no infection. She asked if Ronnie had any side affects and he hadnt so she went to see the doctor and he said give him it. She said that the BCG does that to the lineing of the bladder but should not have further BCG because if there is an open wound the BCG could get into his blood stream and he would end up in A and E. She said he had the same micro of blood last week but the head nurse never said anything and it was given last week. So today he only has to have the BCG in for 1 hour then to the toilet. Just got home in time for that. Did your John ever have trouble like that when he was having the BCG. 

Love Renny

John occasionally had  microscopic blood and or lycosytes in his sample which indicate low grade infection but they never said he couldn't have the bcg They always asked if he felt well

Wr always had the same nurse to do the treatment and it was all she did Not my idea of a great job but takes all.sorts So she was obviously very experienced and on one occasion John said a Dr came in to ask her advice

Think your team are being ultra cautious 

I have seen on Macmillan  bladdercancerforum people recommending Robinson's lemon barley water to help calm things down John always drank and still does lots of water 

love 

Wilbert

Thanks for that it's made me feel better that other people have had the same symtoms. Yes the nurses really know there stuff and we have every faith in ours they really look after Ronnie and me. They always ask me into the office with Ronnie for a chat before he has the BCG. When we go in  I am praying to god they are not going to say HE'S GOT AN INFECTION again. I really dont wont him to miss any more. It's a long way to the hospital IE 42 mile return. But we wouldnt wont to go to any other. The other hospital nearer is York but there is only 2 mile in it so we picked the one we know best as we are from Leeds originally and he is still under Mr xxxx from when he had the Prostate cancer 19 years ago. Ronnie has his PSA done every 6 months and i phone his secretary and she puts the reading on Ronnie's account for Mr xxx to see. That way we dont have to go to Leeds and take his time up. It's a good set up and we know that he is still been watched over.

I make sure Ronnie drinks 2 50 mil bottles of water every day. So he doesnt do too bad with the 3 big cups of tea and orange juice and 2 coffee's a day. 

Well off to make the tea. We still eat at Spanish times.

Take care and stay safe.

Love Renny

I remember our nurse saying bcg makes the bladder very angry and inflamed 

It's good to stay with a consultant and staff you know continuity is  so important 

Enjoy tea 

love 

Wilbert x

Agreed

Goodnight

From a very tired Renny

Hi Wilbert

Ronnie had his 4th dose of BCG today and all went well. No infection but still a micro of blood in the urine but not a problem. She said they would be conserned if there was clots so very pleased he got that over with. She gave hime a blood test to do at our little blood bank thats in our  hospital in Selby. It's a walk in one so just take a number and sit and wait. I dont know why she wants that doing. Most likely for the consultant for when he goes for his camara up after his 6th dose. 

I noticed the picture of you and your John on your profile,  it's lovely. I will put one of me and Ronnie on mine if i can find one. 

Let me know how your John goes on wont you.

Take care. The covids back 

Love and best wishes 

Renny

Hi Renny

John

had his first mitomycin yesterday and all went well

It hasn't irritated his bladder like the bcg did but he had a headache and felt tired Think mainly down to the  stress of not knowing how it might affect him Its put in the same way as the bcg I'm glad Ronnie is getting on with it ok

He was out on his bike twice last week which he enjoyed 

The photo was taken on 1st June in Playa Blanca our 54th wedding anniversary I'm not great with technology and was playing about as I saw you had a photo on

Take care Must admit I'm now wearing a mask sometimes if I think it warrants it

Best wishes 

Wilbert xx

Hi so very pleased he has no side effects to speak of lets hope it stays that way.

We have been to playa blanca for the day. We went over on the Fred Olson ferry from i think it was furaventura. Nice place very quiet.

Off to do the washing while Ronnie has a nap.

take care 

Big hugs to you both

Renny

Thank you

Great photo of you both 

Hugs back

Wilbert  xx