Hope
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Molly so sorry for the dx . Mom had such bad itching I ended up after trying everything Sarna was good but did not last. I found Dermarest over the counter it works instantly and last for several hours. Good luck Prayers to you and your family
Mom is back in hospital after a little accident over the weekend but I feel this is the best place for her to be! Doctors aren’t happy with the steint and are saying that the bilirubin levels. They havnt gone down as much as they had hoped! They are keepin a very close eye on her thankfully and are confident that they will find out the problem via ultra sound! Please god this works all the news is going for bad to worse but maybe it’s better to have all the bad news now rather than a few months down the line! Surely our prayers and novenas will
be answered??? This site is full of hope and has made me much happier!Hi Molly,
Welcome to the site. I’m sorry to hear about your mum but I am glad that you have joined us all here as you will get a load of support and help from us all. And please feel free to ask any questions that you will have and we will help if we can.
I know how you feel, I felt the same when my dads CC was diagnosed. His CC was deemed inoperable and he also had a metal stent inserted and had PDT as his treatment. My dad also had the itching and it can take a few days for the stent to start working as it should and to get the bile flowing again. Once this happens, hopefully your mums itching will stop.
I do think that it would be good for your mum to get a second opinion, or even a third one. Especially so when you say that your mums doctors don’t seem to be up to speed on CC. Did your mum ask them how experienced they were in treating patients with CC? Hopefully Gerry (hollandg) will come along at some point and can offer more on doctors in Ireland.
My best wishes to you and your mum,
Gavin
Hi Molly,
From experience with Dad the doctors should be taking blood each day to check the bilirubin levels. On each occasion Dads went up a few days after the procedure due to inflammation but once this had settled down it did fall quiet quickly. His jaundice though seemed to take forever to fade but his bilirubin was in the 400s. I’m sorry i can’t help with the itching as Dad never had any.
It did take Dad a while to recover from his first stent procedure but he had been in hospital 5 weeks, so I think that added to it.
Is your Mom eating? My Dad had to have ensure/fortijuice drinks after his stent procedures as it took a while for him to get his appetite back.
Has your Mom got a external drain in? My Dad had these in after his stents were put in. They were removed a few days later once they knew the bile was flowing. On one occasion when it wasn’t going down they took him back down to have a cholangiogram. This is were they put a dye through and check if the bile is flowing, as sometimes stents can migrate. When your Mom has her drain removed ask for painkillers before they take it out as it can be quiet sore afterwards.
Tell your Mom to drink alot. This helps flush the bile out of the body. dad drinks 2-3 litres a day and I do think this has helped. My Dad also has hot water and fresh lemon juice every morning and night. I’ve read it helps thin the bile.
If you have any more questions please ask, and if I can’t help you I’m sure someone else will be able to.
Best wishes
Andrea
The cancer has been shown to have sprees to the liver and the stomach lining! I’m not sure what the b level is yet to be honest I feel that they are very out of practise in this area as there are so few cases! We hope that she is releived of the itching and the yellowness soon! How long does it usual take for this to improve? She is very strong and up beat but after the steint been put in 3 days ago she’s very tired down and not as strong or motivated! Any Advice I will take!!
Hi MollyB,
I can 100% understand how you are feeling right night, but finding the people on this site will be a great help to you.
My Dad never really itched much with his jaundice, still doesn’t, which is odd really considering most people do. Have you asked the Doctors for anything to help with it?
How high is your Moms bilirubin level? I know Dad needed to get to 50 before they would do chemo. Once the metal stent is in it should start dropping daily, but don’t be alarmed if it rises or stays the same for a day or two. This happened to my Dad each time he had his stent fitted (he’s got 3) and was caused by imflammation after the stent procedure.
I would get second opinions asap, my Dad was happy with the chemo route after being told he was inoperable but he was never able to have it due to his bilirubin levels never falling to 50. If I could go back in time I would have pushed him to seek more opinions. We have been told now that looking at my dads august scan another doctor may have assessed him for surgery, that’s where we are going on Monday.
Also try the http://www.AMMF.org.uk site, it is the UK cholangiocarcinoma site, and there are links and advice on who to contact on there too.
Keeping everything crossed for you and never give up.
Best wishes
Andrea
Molly, I just remembered its “hollandg”. Go to the search button and type in hollandg or to the User List and his posts will come up. He is extremely nice!
Dear Molly, welcome to our wonderful family. We are so very sorry to hear about your mom. The doctor should be able to give you something for the itching. Also, ice packs help. Here in the U.S. we have a great lotion called Sarna which really helps with the itching but not sure you have it there. Can you tell us about the diagnosis you received? Where the cancer is located, how large it is and why the doctor feels surgery cannot be done? We do recommend 2nd and 3rd opinions if needed. You might want to seek out a doctor who is a little more familiar with this Cancer. I know we have someone else from Ireland and if you use our search engine at the top of the page and type in Ireland you may fine him. Yes, I think it is a man. You can also use the seach area for other questions. We are sorry you had to find us and wish you the best of luck.
Andie, My mom was diagnosied with bile duct cancer last Week ! My world fell apart as surgery was not an option! All the doctors could offer her was a metal steint and chemo but we are not sure when this will start! She had the steint put in a day and a half ago but is still itching like mad at night time only! We hope and pray that all this will turn around for us, it was meant to be so simple (gallstone blocking bile duct) but for the last week every piece of news we get is bad! We are considering getting a second opion off doctors in the UK as we are from Limerick, Ireland and bile duct cancer is very rare here about 10 cases a year we were told! I hope ur dad is keeping well!
Andie:
Love and Prayers are coming your Dad’s way from Wisconsin! Please keep us posted on your dad and how things are progressing for him!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Thanks all.
I keep telling myself that there wasn’t any change between earlier scans, but I’m just so scared it’s going to be a “sorry we can’t do anything”. For the moment I’m holding on to the bit of hope we’ve got, as I’m sure Prof Lodge wouldn’t want to see Dad if there wasn’t a bit of hope.
As for the NHS and second opinions, I agree. Sometimes certain Doctors need to realise there may be other Doctors better. If it wasn’t for this site I would never have heard of Prof Lodge! and so far he seems in such a different league to most, when he couldn’t get the right scans he requested the CT scan himself! how kind. And only waiting a week to see him is also impressive.
Will keep you updated
Love to all
Remember Andie, nothing much change for your dad between the previous two sets of scans did it? It must be slow growing. I love the NHS but the slowness of everything drives me wild. And they don’t love patients suggesting treatments or second opinions do they!
Keep the hope up, you’ve really done your dad proud.Keeping everything crossed for your dad as well Andie. And hoping that your prayers will be answered for Christmas. That will be the best Christmas present ever.
Hugs,
Gavin
Within the last 2 days we have recieved news from the two Doctors I’d sent Dads CT scans to for second opinions.
We are going to see Professor Lodge in Leeds Monday regarding a surgical approach, and Dr Gaya has replied from the cyberknife centre to say cyberknife may be an option too.
Both results will depend on Dads new scans, so fingers crossed there hasn’t been much change in 3 months. If these scans prove ok then next step is a PET scan.
It may come to nothing but at least we will have tried everything, and who knows a miracle could happen and Dad could be here next year to hear stories of our holiday in Florida, something he really wants to hear about.
I keep telling myself if there was no hope the Doctors wouldn’t be wasting there time in seeing Dad.
Keeping everything crossed our prayers will be answered for Christmas.
Best wishes to all
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