Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

New here................

birderwife
Posted by

Firstly I am not the patient  - my husband is the one who has been diagnosed in March with T2 invasive bladder cancer after a TURBT.  A few weeks later he had a scan of his upper body to make sure the cancer had not spread to any other organs, it hasn't BUT he was found to have an aortic aneurysm.  He was told this by his Specialist Nurse who said it was large and would need stenting.  So then the weeks of waiting started.  He was told, again by his specialist nurse that because his ejection fraction was only 51, this is because he has a congenital heart murmur, that he was unsuitable for chemo.  The problem has been since that we think ( we don't know) that the vascular surgeons were not told of the cancer diagnosis.  We eventually saw the Oncology Consultant at the nearest hospital that has an Oncology Dept on 13th May and he starts his Radiotherapy with Carbogen and Nicitinamide this afternoon.  Four weeks.  He has an appointment at last with the Vascular Surgeon at our local hospital on 19th May.  He has been self catheterising since the end of March as he has retention.  He sounds as if he is a wreck but he is an extremely fit 72 year old, who plays badminton and runs around with our four young grandsons.  He keeps our large half acre garden pristine and never stops.  I am so worried that because of the three month delay of getting any treatment he is at risk of developing metastases.  The Oncology consultant told us that by having the Carbogen treatment it would increase his success rate from 25% to 50%, which still sounds very low odds to me.

Anyway at least the treatment has started.

rily
Posted by

Hello 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

Best wishes to All,   rily.  What is a Community Champion ?

birderwife
Posted by

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.

birderwife
Posted by

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.

birderwife
Posted by

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?

Crustybladder
Posted by

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

What if the Hokey Cokey IS what it's all about?

birderwife
Posted by

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.

sueCC
Posted by

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

Sue Xx
birderwife
Posted by

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.

rily
Posted by

Hi . 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. 

Best wishes to All,   rily.  What is a Community Champion ?