andie
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Welcome to our CC family,
Whilst my Dads story isn’t exactly like your brothers, he was diagnosed in April after 2 months of Jaundice. His tumor is extrahepatic (outside the liver) and inoperable. He has had no treatment so far as he keeps having problems with his metal stents. His last CT scan showed no change from his original in March. So in 6 months no change with no treatment.
My Dad is luckily in no pain, your brother has been through alot with his operations, perhaps the pain is through this and not the CC. Perhaps you could discuss pain relief with his Doctors.
Best wishes to you and your brother
Dear Margaret,
I am so glad you both enjoyed your trip to Florida an you escaped the hurricanes.
8Ibs Wow, that is brilliant weight gain, and as you say worth the trip itself.
We are going to Florida next year, mainly for the theme parks though (my 9 year old is so excited!) and Bubba Gumps is on our list to visit after we have been to Universal. My son is desperate for a Run Forest Run sign for his bedroom lol!
Keep Kickin that Cancer!
Much love
Andrea
Thanks Kristin,
I don’t think my Dad would like one as he already has an illeostomy bag BUT if the internal stent doesn’t work perhaps it may be an idea they could use to get his bilirubin level down for chemo. If Chemo shrank the tumor enough then perhaps it could be capped off or took out. My mind is probably working overtime but we just want chemo to start. Never thought I’d be wanting a loved one to start chemo so bad!
Best wishes
Andrea
Hi Lainy,
Just to say I am thinking of you both.
Glad the football is in full swing and Teddy can watch his favourite TV, you did well to get him to watch Americas Got Talent, if sports is on I have no chance with the tv remote!
Much love
Andrea
Dear Alv,
Welcome to our CC family. I have been visiting this forum since my Dad was diagnosed in April after he became Jaundiced in February. He was also told 2-3 months with no treatment, guess what, he’s still here and he hasn’t received treatment yet! Unfortunatley he keeps getting blocked stents which are making his bile level to high for Chemo, but apart from being jaundiced he feels well, has good appetite and his getting out and about like he did before his diagnosis. The only time he loses weight is when he has to go in hospital and have stent changes.
Your Dad is doing well, try and focus on that and take one day at a time. I know that can be hard as whilst I’m always positive in front of Mom and Dad, at times I’m a wreck at home.
My Dad is always positive, even when he’s had setbacks, which have been quiet a few the last months, and I think this attitude helps so much in the fight.
Dad will be having Gem/Cis like your Dad and we were told it could be given for 6 months max before a break would have to be given. In your Dads case it is already doing the job it is supposed to be and more. We were told to hope it makes the tumor stay the same, a shrinkage would be a bonus!
Best wishes to you and your family
Andrea
Good luck Kristin,
I will be keeping everything crossed for you, and hoping those wimpy tumors will be blasted away.
Best wishes
Andrea
Marion,
Dads report mentions Extrahepatic CC. Whenever they drawer a picture for us it is always a Y shape, and Dads tumour sits in the middle of the Y, outside the liver near the gallbladder. They said if it had grown anywhere else, due to it’s size it wouldn’t have caused jaundice (it’s 1.8cm) but it has grown right in the middle, therefore causing a blockage. We did find out it caused his shrivelled Gallbladder as the bile stopped going there and caused this to happen.
Would it be a Klatskin tumour? I did mention to the oncologist but he said he was getting too technincal, ge only knew it has Cholangiocarcinoma. I have never asked the Doctors as they always say Extrahepatic CC.
The lastest is Dad is booked in next Tuesday for them to look at his stents, they are thinking of doing it via ERCP instead of the usual PCT. They also mentioned Dad being on antibiotics all the while to help stop the infections. They have given him Augmentin antibiotics, inhope that it is an infection and this will clear it up, they have told him to keep his Oncolgy appointment tomorrow so he is still in their system. He is very down at the moment as once again chemo has been cancelled and he is obviously not looking forward to another hospital stay. Mom is also finding the set backs very hard.
Best wishes
Andrea
Thank all,
Whilst my Dads tumour is small, it is inoperable due to being close to portal vein/arteries. This may make Radiation not an option but I will still ask Dad to mention it to the oncologist Wednesday. Dads tumour is in the Y section on the bile duct.
Best wishes
Hi Linda,
I’ve been doing a bit more research and I have found that they use it for PSC, it’s part of the ABC Regimen:
Repeated cholangitis attacks are sometimes managed by a rotating antibiotic regimen often termed
Sorry I can’t answer your question, I’d just checked your post to see how your Mom was doing.
Have you got a telephone number for the oncologist, perhaps you could give him a call to discuss your concerns, or even the Chemotheraphy nurses may know.
I hope the anti nausea drugs manage to keep it under control and she enjoys her week off chemo.
Thinking of you
Andrea
Thank you Marion, I knew Rick had posted before but I couldn’t find it! I will take the info with me today when I meet with Dads Doctor.
Thanks Jemima, I am so glad your Moms chemo is going well, hopefully she will not have any stent problems, my Dad just seems to be unlucky with them. I have contacted Dr Gaya Re: Cyberknife. He did mention before that he would like Chemo to be given first but I have explained that Dad doesn’t seem to be able to get to that stage. There is no limit for the bilirubin level with Cyberknife, so we may have to go down that route. The only problem is the price as we would have to go private. We will see what today brings then have to decide as Dad has gone since February with no treatment.
God Bless you too Bob
Best wishes to all
It’s a no go, once again. Dad’s bilirubin is 90, up from 68 2 weeks ago. It has been exactly 8 weeks again and it has started to rise. Can’t put into words how I feel. Mom is upset and Dad is frustrated. We have appointment to see doctor Friday pm to see what they say. Seems we are never going to get to chemo at this rate. All things are going round my mind, could the stent be blocked again already? could it be an infection (but Dad feels well, no fever etc) or could the dye he had during CT scan irritated his ducts. More waiting.
Best wishes to everyone
