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Dear Lee, My husband had the stents and they do help right away. The yellow color takes a little time to leave as I always compared it to a dye on the skin. Teddy had his stents changed every 6 weeks to about 3 months. Like Marion’s husband, he too would get infections about 2 times a year and his temperature would shoot up to 103 and he was so chilled I couldn’t get him warm enough. After the 1st one I learned to just call an ambulance to get him in to ER. The reason for the ambulance was if you go by car they sit forever in the waiting room. By ambulance they get right in. From his records ER knew to start him immediately on an anti biotic drip and the one they used for him was Levaquin which seem to work by the next day. Best of luck. The ONC told me after the 1st time that if his temperature ever shot up to 101o to get him in.
Lee……I assume your husband has a plastic stent and is feeling significantly better by now. Efficacy of the stent is about 6 weeks to 3 months. Metal lasts significantly longer and follows different procedures. Stents are rather small and porous and have a tendency to clog with sludge and will need to be replaced accordingly. Signs of a blocked stent generally include an elevation in temperature. I took my husband’s temperature on a daily basis (just to be sure to not miss the signs of an impending infection.)
The Cholangiocarcinoma Foundation urges all patients to request the biliary emergency card. The information can be found here:
http://cholangiocarcinoma.org/biliary-emergency-information-card/
I hope for others to chime in and share their personal experience with you as well.
Hugs,
MarionThanks, Marion!
It has been a hectic couple of days. My husband has not been feeling well for the past several days and developed Jaundice (his total bilirubin was 8.4 this morning) over the weekend. He was admitted to the hospital last night and had ERCP done this morning. They found a stricture in the distal bile duct and the common bile duct is dilated from 4cm to 13cm. They put in a stent to drain. I am wondering if anyone would share your experience with stent, jaundice, etc. Thanks!
Lee
Lee….a warm welcome from me to you as well. Thought to help you out by using the Search link: hepatic liver infusion pump and the below popped up:
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=1244482557
Radiation will give you many more hits, as there are various treatments available. Please do not hesitate from asking questions, as nearly always someone with be able to share his/her personal experience with you. I also wanted to mention that you are the first reporting treatment with combination of:
1. monoclonal antibody (Avastin)
2. a BRAF inhibitor (Keytruda)
3. protein kinase inhibitor (Tarceva)
I wish for continued success.
Hugs,
MarionHi Lee,
Welcome to the site. Sorry that you had to find us all here but glad that you have joined in with us here as you are so in the best place for support and help and will get loads of each from everyone here. Have you tried using the search forum function at the top of the page? You can type in what ever you want to and it will throw up posts containing what you are looking for if they are here on the site. The posts on the site are all by our members so you will be able to read others experiences with various treatments etc.
It will probably be a bit quiet around here for a few days with it being Easter but I know that you will get support and help from all of us here.
My best wishes to you and your husband,
Gavin
Dear Catherine,
Thanks so much for sharing the information. I hope the CT scan for your mother next week continues to be good news.
In terms of seeking second opinion, we had consultation with Dr. Gores at Mayo Clinic a couple of years ago and his second surgery was done at the Memorial Sloan Kettering in October 2013. We are currently considering going to MD Anderson for consultation on radiation therapy.
Historically, my husband did not respond to cytotoxic agents as well compared to the targeted therapy. He is now on Avastin, Tarceva and PD-1 inhibitor (Merck’s drug). His last check of CA19-9 three weeks ago was slightly decreased, and he is scheduled to have CA19-9 checked next week. We are hopeful that the combination works.
Lee
Dear Lee,
Welcome to our board. I did see that Lainy shared some links with you in another thread. My mother had Y90 (radioactive spheres) which has so far worked very well for her. We were fortunate in that she only had the one tumor so they were able to target the treatment in one location. We find out her CT results next week and hoping that she still has no viable tumor.
You mentioned that you’ve already been through many different drugs- has your husband had genomic testing done? And, if you’ve had the chance to read some of the posts here, you’ll see that second opinions are often very valuable. Where is your husband being treated?
Best wishes- we care and we’re here to support you however we can.
Catherine
I am Lee. My husband was diagnosed with intrahepatic cholangiocarnoma in November 2010 when he was 49 years young. He had a left hepatectomy in December 2010 with negative margin followed by adjuvant therapy with Gem/Cis for 6 cycles. Unfortunately his disease recurred in September 2011 with PET scan showing multiple lesions in the right liver. Since then, he has been treated with numerous regimens including cytotoxic agents (chemotherapy) as well as targeted agents. He responded to each regimen initially, however, the response to each regimen was almost all short-lived. Among all of the regimens he has received so far, the best response he has ever had was the combination of Erlotinib (Tarceva) plus Bevacizumab (Avastin) that kept his disease stable for 9 months. He had another surgery in October 2013, which removed several lesions and ablated a few lesions. He has been treated with several different drugs/regimens since then. We are now looking for next treatment in case the current regimen stopped working. I am wondering if some of you could share your experience with radiation, Hepatic Artery Infusion (HAI) pump or any other treatments that show promising results. Thanks in advance!
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