andie
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Thanks for that info Kris, I will tell Dad to keep drinking, but to be fair to him he’s good and does drink alot as the doctors advised him too when he was diagnosed.
Best wishes
Dear Jtoro,
Whilst I’m sorry you have had to find this site, you have come to the best place for advice and support.
My Dad was diagnosed with CC in April. His tumour is inoperable and hopefully when they can sort his stent out he will be starting Chemo Gem/Cis soon. Dad’s only symptoms were jaundice and at first they thought he had gallstones.
It’s a rollercoaster ride, with many different emotions felt. My Dad is staying positive, and has the attitude there is always someone worse off. I think this positive attitude and determination is helping him. Of course he must have dark and scary moments but if he does he never shows it, something I really admire about him. He had colon cancer 9 years ago, and it was touch and go for a while, 3 operations, chemo and radiation theraphy over 12 months but he kicked that cancer and is determined to kick this.
At the moment he is doing well, he’s eating as normal and going about his day to day life. The last few days he’s developed jaundice again, just as he was about to start chemo!, so our rollercoaster is going down at the moment but I’m sure once his stent is unblocked the rollercoaster will go up again!
I agree with Kris, your children are at the age where they are old enough to know a bit more. You will fight this all together but you need to be honest with them. Yes it’s scary, yes it’s devasting but each day is a blessing, time spent with family and friends, and whilst some days are going to be bad, some are going to be good too. Take it one day at a time and try and be positive and strong.
Sending big hugs and best wishes
Hi Kris,
My Dad is drinking lots at least 3litres a day, do you think this is helping his urine to stay normal?. As you say apart from looking yellow he feels fine.
If you don’t mind me asking when your stent was blocked was it due to tumour growth or just a build up of bile sludge etc?
Thank you Jemima, no itching yet and no change in his urine but he seems to have gone yellow overnight so perhaps that may change too. If it does he’s agreed to go to A&E.
Lainy, you do make me laugh but thanks for crossing everything including your eyes!!
I have everything crossed too, including my toe that I broke yesterday!!
Best wishes to you all
Dad booked in to have his stent done Wednesday. He has got to phone for a bed Tuesday, so everything crossed that there is one available!
He is starting to go yellow now so if there is no bed Tuesday I will be very tempted to take him to the A&E department. If his stent procedure is booked then it doesn’t matter if he has to sleep in A&E for 1 night!!
Keep everything crossed for us
Hi Kristy,
Was thinking about you today. I don’t blame you for moaning, a simple blood test should have been given so you know if blood levels are ok for chemo. It’s the little things like this that sometimes push me over the edge and make me want to scream.
Did the oncologist mention your partner taking a low dose antibiotics whilst on Chemo?. My Dad was advised by his Doctor to, it helps keep infections at bay in the stent whilst on Chemo.
Good luck for tomorrow
Best wishes
Hi all,
Dads clinical nurse is looking into local hospitals too. We should know one way or another tomorrow morning.
Fingers crossed !
Hi All,
Dads clinical nurse specialist is on the case and looking for a bed either at the QE or another local hospital. Dad just phoned and the secretary knew he was waiting for a bed, Kath the Clinical Nurse was in Clinic and her secretary said she will get back to him later to update him.
The Doctor on Friday was shocked when the clinical nurse told him no beds were available until mid/end July, I think he thought they would have Dad in sooner but if there are no beds then I suppose they can’t magic one, I wish they could though!
The Doctor did say to come straight in if fevers occur or he starts to feel ill. I know he doesn’t feel ill which is great BUT this chemo needs to start and I know the longer it goes on the longer it will take to come down. To be fair to Kath she has said this too but it’s the bed shortage that’s the problem.
It’s a pity he can’t take his own bed!
Hi Jemima,
Dad is on the list for an emergency bed if any cancellations come up but you know what the NHS is like, I can’t see that happening myself. He is also going to have to consider going to a different hospital if they have a bed first. He really doesn’t want to go to another hospital as he trusts the doctors at the QE, but i’m afraid he needs to get this sorted asap even though he doesn’t feel ill.
I want to take him to A&E but Dad won’t fake any symptoms!
I just hate all the waiting that we seem to be doing, hopefully we will get the call soonto say there is a bed
Best wishes
Hi Pam,
Sorry to hear your Dad isn’t feeling any better, but he has been through alot and it may take a bit longer for him to recover. My Dad only had biliary stenting and jaundice and it took him a few weeks to get back to normal. I’m no expert but from what I’ve read on previous posts I think your Dad urgently needs to get his stent replaced or a drain bag put in. This will make him feel much better as he needs to get his bile level down.
I think the UK do measure bilirubin levels differently but my Dads Oncologist and surgeon have both said if he gets the dark urine, itching and yellowness in the eyes he needs to get his stent sorted. Once this is sorted and your Dads levels return to a normal level then Chemo can start.
I don’t think Chemo will be given if your Dad is too jaundiced as the liver won’t cope with the toxins. Perhaps another member may know what the limit is for the bilirubin level, in the UK it’s 50.
If I was you I’d write a list of all the questions you want to ask in advance as sometimes when you get in the meeting rooms your mind can go blank. If you are not going in with your Dad perhaps you could write them down on his behalf and tell him to give them to the doctors, this is what I do.
Good luck for tomorrow
Hi,
My Dad will be having Gemcitabine and Cisplatin. Day 1 he will have both, Day 8 he will just have Cisplatin then he has 13 days off. They are hoping to give him 3 cycles then scan to see if it has worked. This was the treatment that came about from the ABC02 trial and has proved to be succesful in advanced cases compared to just Gemcitabine alone.
My Dads CC isn’t in the liver it’s contained in the bile duct outside the liver.
Good luck to you and your husband with the Chemo.
Hi,
Our local hospital that my Dad was sent to when he was admitted for jaundice told him there was no treatment available and more or less to go home and live what few weeks he had left.
The local Liver hospital, The QE Birmingham, looked at Dads scans and though deemed it inoperable due to it’s location (though very small it is round important veins and arteries, surgery would be too risky) had agreed to start Dad on Chemo. They were able at the time to get a stent into Dads bile duct, something that our local hospital had trouble doing. This got rid of Dads Jaundice and up until last week that kept it at bay. Typical of this rollercoaster ride the stent has decided to block just as chemo was about to start aarrgghh!! We are now awaiting an emergency appointment for a bed to become available so Dad can have his stent unblocked.
Dad wasn’t keen on second opinions for surgery as over the last few years he has had a few, and I think the fact that the operation due to tumour location could be more life threatening than the cancer itself put him off. He had colon cancer in 2000 and this resulted in 3 operations and most of his colon removed. He recovered well from this and was cancer free for 9 years until this little beast decided to pop up. I think because he feels so well he doesn’t want to undergo another operation that has more chance of not working, which I can understand. He was happy with the Chemo choice as originally he was told no treatment was available.
We have looked into Cyberknife but have been told Dad must have a response to chemo first. I’m hoping that because it’s slow growing and at the moment very small that the Chemo will help keep it under control. We were told if it had grown anywhere else it would have gone undetected, luckily it chose to grow just so that the bile duct became blocked and the jaundice issued the warning signs.
My Dads is extrahepatic, have they said where your husbands is as this can make a difference to surgery/treatment options.
I will be keeping everything crossed for you that you get some answers, and I’m sure more members will be offering you some more advice soon.
Keep positive
Dear Kristy,
What a rollercoaster of a year you have had. I’m sorry you have had to find this website but the people on here are so helpful and kind and they will do the best to help you.
My Dad was diagnosed in April when he became jaundiced, no other symptoms, and luckily he still feels well. He was due to start chemo Gem/Cis but his bilirubin has gone up again and he needs to have his metal stent unblocked. My Dad is being seen by Dr Bramhall at the QE Birmingham but they have told my Dad his tumour is inoperable so we are hoping that the Chemo will work and help to prolonghis life.
Looking at this site these are a few contact details for the UK
Dr Valle, Christies, Manchester
Dr Peter Lodge, St James, Leeds
Prof David Cunningham, Royal Marsden LondonDr Valle was involved in the ABC02 trial which is the trial that made Gem/Cis standard chemo treatment for CC in the UK. Dr Valle can be contacted on 0161 446 8106.
I hope the above helps.
Best wishes and Good Luck
Hi Pam,
My Dad was diagnosed in April and is awaiting Chemo. I’m not sure where you are from but we are in the UK and they won’t do Chemo if the Bilirubin is above 50. My Dad had a stent in April and unfortunatley it decided to block just as he was about to start his first cycle of chemo. The previous week it had been 45 and then it rose to 75. He is now waiting for an emergency slot to become available to have the stent unblocked.
One thing I’ve learnt is this CC is a rollercoaster and you really have to take it one day at a time, which is really hard for someone like me who likes to plan everything!
Have you asked the doctor to prescribe Ensure drinks? They do fruit flavours or milkshake style ones. This helped my Dad to gain the pounds he dropped whilst in hospital due to being nil by mouth for various cancelled procedures. Luckily Dad never lost his appetite and still continues to eat well but these helped give him the kickstart to put on weight.
Wishing you and your family all the best
