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Hello birderwife and welcome to the group. Sorry to hear of the extra complication your husband has on top of the bladder cancer. A positive is that it appears to be confined to the bladder. We are all familiar with the long waiting times, it never gets any less anxious. I had radiotherapy, but am not familiar with Carbogen and Nicitinamide. I had 5FU chemo alongside the RT. Good to know he is otherwise quite fit as this helps. My stage was T3 and the radiotherapy worked for me. I am now several years down the line, so best wishes for your husband

Thank you Rily, just waiting for his return from hospital, he didn't want me to accompany him today as he had to take the Nicitinamide at 2 pm and then had a wait until 4:40 pm for the radiotherapy with Carbogen.  Unfortunately there is one lymph node involved which is very close to the tumour site and will hopefully be zapped at the same time.  As I said before, he is extremely fit for a 72 year old and and we are are hoping this will help him.  It is very good to hear of someone who has had successful treatment.

Thank you Rily, just waiting for his return from hospital, he didn't want me to accompany him today as he had to take the Nicitinamide at 2 pm and then had a wait until 4:40 pm for the radiotherapy with Carbogen.  Unfortunately there is one lymph node involved which is very close to the tumour site and will hopefully be zapped at the same time.  As I said before, he is extremely fit for a 72 year old and and we are are hoping this will help him.  It is very good to hear of someone who has had successful treatment.

Well Thursday was the first radiotherapy appointment,my husband had to be at the hospital at 2 pm to take the anti-sickness tablets (2) and the Nicotinamide tablets - 10!  yes TEN large white tablets! Then a two hour wait for the tablets to do their job and then the radiotherapy.  By 9 pm that night he was saying he had a headache which we put down to dehydration as he didn't drink much in the afternoon.  He had a bad night and he got up feeling very apprehensive about taking the 12 tablets.  He took them struggling with each tablet.  We left for the hospital an hour and fifteen minutes away from us.  He said his legs felt like jelly and he slumped into a chair in the waiting room and I went to the reception desk to tell them he was feeling very unwell.  A Radiologist came and took us to a private room and he laid on the bed while she questioned him about how he felt.  She knew him from the day before and asked was he the man with aortic aneurysm.  She then went off to speak to a consultant but couldn't find one but managed to find a registrar doctor who hooked him up to a monitor to check his vital signs, which were normal.  It was decided it was the Nicotinamide that had upset him.   By this time he was feeling slightly better so they agreed he could have the radiotherapy .  Thank goodness they did, the tablets didn't go to waste.  We got home at around 2:30 pm and reckoned that it had added an hour to the day.  My husband was still feeling unwell so went to bed for at least two hours but when he woke could not face food.  At least he has two days off now .  My question is how do people deal with the nausea and is there a best time to take the anti-sickness drugs?

Hello birderwife

In my experience the nausea goes away after a few days and starts again after the next day of treatment. At least the anti nausea pills prevented any vomiting. I had to take 60 tiny pills a day for 3 days after each chemo session and just followed to dosage advice given by my chemo nurse.

It's a grim time for some of us while undergoing the treatment but it will be over and eventually I felt much better, as I do now, nearly 3 years later.

He does need plenty of fluids and whatever he fancies to eat, small amounts and often worked for me.

I wish you the best for this difficult period in your life.

CB

Thanks for your reply Crustybladder.  Unfortunately my husband only has the weekends off so he is not looking forward to Monday at all.  I think he made the mistake yesterday of taking the 10 large tablets at the same time as the anti-sickness drug, so Monday he will take those an hour before the 10.  He's been told by the Consultant Oncologist that his chance of success without the Nicotinamide tablets and the Carbogen gas will reduce to 25% instead of 50% so of course he wants to battle through.  2 treatments down 18 to go!   I'm so pleased you're well after three years and thank you for your good wishes.

Aww bless you both, what a horrendous time you both seem to be having, I’m so sorry but I’m no help to you, just wanted to send you my best wishes and hope he’ll soon feel better X

10 radiography treatments done, 10 to go.  Still struggling with nausea from the 10 Nicotinamide tablets he has to take before the treatment, not helped by the hour's journey to the hospital.  Also now using five to six catheters a day as he has lost the ability to pee on his own, probably due to the radiotherapy.  Anyway, onwards and upwards.

Hi birderwife. Halfway there. I have been looking at Nicotinamide and the side effects do look to be nasty. Nearly the weekend and a short break. I know how tiring the daily visits can be , but hopefully worthwhile in the long run. Best wishes. 

Today was meant to be the last day of radiotherapy - 20th session.  I dropped my husband at the door and went off to park the car, which took longer than expected, usually I walk into the waiting room and he has already gone through to the treatment area but today he was still sitting there.  Apparently there is a limit on how long he has to wait before the effects of the Nicotinimide wear off so he was getting a bit agitated with the wait.  His appointment time was 12:25 pm  but he was called at 12:55pm.  I sat and waited and the time ticked by, 30 minutes, 45 minutes!!!!  After an hour I walked through the double doors into the unit to find him sitting in the changing room fully dressed looking very depressed waiting for another day's suppy of tablets. Apparently the team had tried twice to scan and treat him but had failed to get the machine in the right position.  He was asked to go back tomorrow at around 5 pm but as it is the County Show that day we thought it best to wait until Friday when the traffic will not be so bad.  He was told his bladder was the wrong shape?  I have suggested that perhaps our hour long journey to the hospital may be the problem and perhaps he should stand up and walk around the waiting room rather than sitting down.  So our celebration of the end of radiotherapy has been put on hold hopefully only until Friday.  Anyone else had this problem?