wish I didn’t need to find this
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Glenda, the leakage is common. I used to put lots of gel around the wound, then layer gauze over the gel as the bile can really burn the skin. Your daughters will be fine as they will follow your example of strength. The waiting game is the worst but it won’t be long now. Stay strong! We are all here for you!
His drainage tube is leaking around where it comes out of his skin. From reading on here it doesn’t seem like an unusual thing to happen so I can manage not to panic while we wait for the on-call dr to call back. His temperature is normal and he ate more today than he has so I think that’s a good sign.
Sunday we go down to Baltimore for another MRI, they said the one done locally is not as high a resolution as what they can do and Dr. Pawlik wants a better one before the operation. I only wish they could have scheduled it the same day or day before the pre-operative appt. It’s 3 1/2 hours one way to Hopkins, so lots of driving time coming up again.
So far our daughters aren’t too freaked out about the whole situation, but I know the more often we’re gone the more it distresses them too.
Still waiting for the OR to open up on the 14th, which would be great. He’d really like to just get the operation over with, he’s so hoping to feel better after he recovers. But still we’re thankful that at least the 21st is a sure thing if not.
Sorry for rambling, but it is a little unnerving to wait so long for a call back from the on-call dr.
Hi Glenda,
This is great news! Great to hear that your husband is feeling better today and also that he is a candidate for surgery. I will be keeping my fingers crossed that the surgery will be a success and a ton of positive thoughts are coming your way. Please keep us up to date on how everything goes.
Best wishes to you and your husband,
Gavin
Glenda….Congratulations are in order on both accounts; your husband feeling a tad better than yesterday and of course the upcoming surgery. You might want to take your husband
Dear Glenda, another YIPEE post! I love it. Two in one night! Are we beating this or what??? Like I say, the fright has now turned to fight. Did you ever hear of a group of people who get so excited upon hearing the word surgery? Yes, this was a good day.
Thank you all for the encouragement. His surgery is scheduled for 9/21, unless the OR room opens up on 9/14 in which case they’ll move him up a week. Pre-op appointment is 9/7.
Thankfully he seems to be feeling a little better today.
I asked if he needed an oncologist and the nurse said they decide that after the surgery.
Reading the success stories on here has truly helped me, thanks to all for sharing them. Hope is a wonderful thing.
Dr. Pawlik is a great doctor and he is upfront with what he can and can’t do. We saw him a couple of weeks ago for my mother who has CC. Unfortunately, for her – her CC is inoperable. One of the oncologist nurses there recommended Muscle Milk as it has a lot of protein which help retain fluid in the muscles. Hope that helps. Sorry you found this site but it has so much great information. Blessings.
Glenda- and like all others welcome and sorry you had to find us. I am a CC survivor. I am alive because of two liver transplants. (Please read my story at thetelegraph.com under christmas miracle) My only sympton was itching and no jaundice, (just a great tan!!). My bioposy also was negative but my doctor knew that is twas wrong and immediately put me in Dr. William Chapman (he takes phone calls) care, at Barnes-Jewish Hospital in St. Louis MO. I am alive because of these doctors.
I was diagnosed July 31, 2008 and finally am “normal’. It has been a long 3 years,(the last rites tiwce) but we made it and life is sooo good!
Make sure transplant is discussed and if it not an option, make sure that it is ruled out by a doctor who believes this is a cure and option. There is HOPE!!
Lots of prayers-CathyHi Glenda,
Welcome to the site. I wish that you didn’t have to find us either, but I’m glad that you have joined us all here as you have come to the right place for support and help, and you will get a ton of support from us all. And if you have any questions then ask away and we will help if we can.
As the others have said to you, not everyone gets the itching that can come with the jaundice and the bile build up. My dad did get it and he hated it. Yes it is a very good thing that your husband is a candidate for surgery and I hope that his meeting with Dr Pawlik goes well. Many people are not able to have surgery after diagnosis and my dads CC was also deemed inoperable.
As to nutrition, we have a nutrition board here that will be of help to you –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=12
This page may also be of interest to you –
http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Eatingwell/Eatingwell.aspx
Please let us know how the meeting with Dr Pawlik goes. We know what you are going through right now and we are all here for you.
Best wishes to you and your husband,
Gavin
Glenda…what a smart thing you did by driving to the ER of your choice. Once in the system of the medical institution the road becomes easier to navigate. Dr. Pawlik is a great advocate in re: to furthering the research into this cancer and he has vast surgical experience.
Negative brushings are not uncommon in fact; I have been told that it occurs in excess of more than 50% of the time.
The good news is that the drainage is successful and that your husband did not experience the accompanying itching associated with bilirirubin build up. BTW someone explained to me the reason for the itching. Bilirubin forms crystals on the skin and it is these crystals that cause the awful itching.
Fingers are crossed for a positive with Dr. Pawlik and please, keep us posted on the results.
All my best wishes,
MarionHi Glenda, You will find great support on this board! Yes, like Lainy said not everyone gets the itching yet for some it’s the first sign.
I am so glad your husband is able to get surgery. I am sending positive thoughts that everything goes really well. Tell him we are all here cheering for him.
When my Doug’s appetite has been poor and energy low he always seems to enjoy fruit smoothies which I make with vanilla flavoured protein whey powder (can buy at the drug store), fresh and frozen fruit, milk and fruit juice blended together. The frozen fruit makes it cold or you can use ice cubes. I have made him ones with bananas, peanut butter, whey powder, milk and ice cubes too. The whey powder was recommended by Doug’s doctor.
Best wishes to you and your husband. NancyGlenda,
I’m very sorry about your husband’s diagnosis. In regards to your question about nutrition, I drank 2 ensures a day after my liver resection to help gain my weight back. They were easy to get down even though I wasn’t really hungry. Best of luck to you!
Hello Glenda and welcome to our wonderful family but sorry you had to join us.
You are doing an awesome job, just wonderful. Not everyone gets the itching with the jaundice. It depends where the CC is located and what it may be blocking. You are in the best hands at John Hopkins and when we hear a yes to surgery that word is music to our ears. I will leave the nutrition part to our members are are very well versed in that area. You might also go to our search engine at the top of the page and type in Nutrition, many past posts will appear.
Wishing you good luck and please let us know when surgery is scheduled. You have come to the right place, we care!I’ve been reading a lot of the posts here and must say I felt I was able to breath again after reading some of them. The first research I was doing was giving absolutely no hope.
Anyways, my husband, who is 46 began in July with pain and jaundice, went to a local hospital, they did a ct and immediately suspected cc as his bile duct was blocked. ERCP to put in a stent and take brushings. Path came back clear and so we thought it was perhaps a benign issue.
Last weekend he started turning yellow again. finally got the results from his MRI which said the stent had come out but the good news was no tumors in any other area could be seen. I called Hopkins and tried to get an appointment the next day with Dr Pawlik but was told this was impossible, had all his info faxed to Pawliks office. Drove to the ER at Hopkins, he was admitted and over the next couple of days had a drainage tube inserted, the next day he had to be upsized as he wasn’t draining well enough, almost had to have a second tube inserted on the other side but finally his bilirubin dropped.
So, we are back home for now, he has to call tomorrow to set up an appointment with Pawlik’s office for surgery to resect the bile duct and possibly part of his liver. We don’t have staging info yet nor even the results of the brushings and clamshell biopsies taken at Hopkins but Dr Pawlik has no doubt that this is cc. And believe me we tried to get them to give us some other possible reason for the blockage.
From reading here, it appears it’s a good thing that he is a candidate for surgery. Trying to find the positives in this.
One thing I’m wondering is he has never and still doesn’t have any itching. Not even before the first stent when he was extremely yellow. Isn’t that unusual?
He’s extremely tired and has no appetite since yesterday. Any suggestions on diet that will try to get him built up in strength before undergoing this major operation?
Glenda
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