My dad diagnosed in April .
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Hello everyone. Hope you’re all well.
My dad’s condition has been deteriorating. The Docs at the Cancer hospital (which is government run), advised against the PTBD or ERCP as they think it would be of no help to his condition.
He was recently admitted in a private hospital as his bilirubin reached 14, he was very weak, slept all day and his intake was restricted to fluids. They treated him with antibiotics, albumin, sodium & potassium. His bilirubin is now 8.
At this hospital an oncologist informed us that this government run cancer hospital refuses to take up cases that are high risk due to the vast number of people they deal with.
We did an MRCP that shows a mild progression of disease with the tumor reaching the hepatic porta & involvement of the primary biliary confluence & resultant IHBR dilation in the left & caudate lobes of the liver.
A Gastroenterologist we were referred to, through the private hospital advised us that he would only have around 20 % relief from the jaundice, if, the stent was successful and it would not help with ascites or the disease. We would also have to consider the risk involved in doing an ERCP which could result in sepsis and other complications.
At this point it’s his comfort & quality of life that is important to us.
However, we’re really confused and stuck in making a decision considering the risks involved and his current condition, his body being so frail due to no intake of any solids, minimal liquid intake, ascites and being confined to the bed.
My mother is very sad, stressed out and tired to even think about what to do next. She’s just taking each day as it comes. This leaves me to make important decisions and make sure we’re doing all that we can.Hi Caroline,
Thanks for giving us some more info on your dad and I hope that when you get more info on Tuesday that it is good news that you get. And please let us know what they say about everything. Hoping that the meds work for him and that he starts to feel a lot better very very soon. Have a look at the nutrition board that we have here on the site and you will find lots of valuable info and posts over there about foods that will be of use to your dad.
Stay strong and remember that we are here for you.
My best to you and your dad,
Gavin
Caroline…..sorry for the confusion, I erroneously thought that you had mentioned a metal stent. Did the physicians replace your Dad’s plastic stent? The tapping you are mentioning is (in this case) the same as paracentesis. It might help to only give your Dad small meals high in protein in order to regain his strength, but some things are more difficult to digest so you would want to watch out for that.
Hoping for Tuesday to shed a bit more light on the situation and for your Dad to be comfortable.
Please keep us posted. We care.
Hugs,
MarionThank you so much everyone for your time & support. I’m located in India & since I didn’t find a local forum, I joined here & I’m glad I did.
So, the stent inserted in April, that is blocked now, was a plastic one. He was discharged from hospital today & the docs have put him on meds to drain the fluids. He’s very weak & although he has an appetite he cannot stomach much due to the ascites. He’s now on a zero salt diet.
@ Marions thank you for asking theses questions. Is tapping & paracentesis the same? He had a bag attached for 3 days, during which a liter of fluid was drained per day along with intravenous albumin. The fluid has gone for testing, the results aren’t out as yet.
The docs told my mum today that neither the PTBD nor the metal stent would be of any use at this stage. We have to see them on Tuesday to discuss this further/ treatment options.
I’m hoping his body is capable of going through any further treatment.Caroline….I too am sorry to hear of your Dad’s problems. I am wondering why percutaneous transhepatic biliary drainage was recommended when a metal stent already has been inserted. Has cleaning out the stent been discussed or the possibility of inserting plastic in the metal stent?
By managing the ascicities do you mean that a paracentesis was performed. Was the fluid tested for infection? Sorry for asking all these questions?
Hugs,
MarionHi Caroline,
Welcome to the site. Sorry that you had to find us all here and I’m sorry to hear about your dad, but glad that you’ve joined us as you’re in the best place for help and support and you’ll get loads of each from everyone here.
Stents can clogg over time, 3 months or so for a plastic one and around a year for a metal one. Do you know what type of stent your dad has, metal or plastic? Plastic ones can be changed and metal ones can also now be cleared out. Has your dads med team talked about that option? You are right in that chemo will not be done when a stent is clogged as the chemo would not be able to leave the body once in according to my dads onc when he had a clogged stent. Hopefully once the clogging issue has cleared up chemo will be another option and no, I do not believe that your dad has lost a lot of time here.
The ascites is something that needs to be dealt with now and here is a link with some info on it for you –
Is your dad on any medication for this? Unfortuantely ascites are quite common with this cancer and there are a ton of posts here on the site about this.
I know that things are disheartening for you right now but please do not give up hope. We are here for you and know what you are going through right now. Please keep coming back and let us know how things g for your dad, we care.
My best wishes to you and your dad,
Gavin
Dear Caroline,
I too want to welcome you to this site. I can’t advise on this matter as I have no experience with stents but I am sure others will chime in who do. Please hang in there and I will say a prayer for you and your dad. Please keep us posted on your father’s progress….take care.
MelindaWelcome Caroline. Glad you have joined us, but sorry you had a need to. Can’t add much to what has already been said, but to tell you to hang in there., Things will hopefully settle down and a treatment plan will be put into place for you dad. Please let us know how things are progressing. You have find the best place to be for support and information regarding this disease.
Darla
Dear Caroline, welcome to the best place to be for CC support! I am so very sorry about your Dad but don’t feel time has run out as this is a very tricky Cancer, some times it seems it has a mind of it’s own. Hopefully after the bile ducts clear again and the antibiotic is working Dad’s team will come up with a treatment plan. I know it is very scary right now but it sounds like they are following the route just as our Doctors do here. First thing is to take care of the stents and fluid. I promise you that when Dad is feeling better and a treatment plan is in place your fright will turn to fight. Hang in and BE STRONG you are not alone, we are all here for you!
Caroline, I can “hear” the frustration, fear, desperation and sadness in your words. Don’t assume that you’ve lost out on time. I know that is fear and frustration talking. Where is your dad being treated? Get that 2nd or even 3rd opinion. I know that there are others on the boards who have more information about that than I do….getting records to someone for another opinion as quickly as possible and they may have some other ideas as well. I’m sure there will be other responses soon. For now, from me, welcome to the foundation website. You will find an incredible community of compassionate and knowledgeable people who have in one way or another been touched by CC. We all “get it” here and don’t judge.
Hello everyone. Hope this finds you well & I extend my sympathies to everyone battling this disease.
My dad was diagnosed with CC in April on the emergence of jaundice. He has an 8 cm tumor in the right lobe. An ERCP was then performed to insert a stent. A resection was suggested by the surgeon whose care we were under. However the laparoscopy showed that the cancer had spread to the left lobe as well. The surgeon washed his hands off our case with no further guidance.
We decided to try chemo. However with a whole re-consultation with oncologists and subsequent tests that had to be conducted, we’ve probably lost out on time ? The jaundice has returned as the stent is blocked and this time, with ascites. He’s been in hospital for the last 4 days to drain fluids and undergo an intravenous course of antibiotics. The docs suggested a PTBD followed by the insertion of a stent. However after 4 days the fluids have come back and now the PTBD cannot be done as it could cause internal bleeding and other complications. As a result, chemo if off as well as the bilirubin is still high .
Some docs are of the opinion that the ascites could clear up with a “medical management”. But we’re very confused and lost. This is all so disheartening with a bad news mounting and nothing in our favor.
Thank you for reading my post. I look forward to your views.
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