Bile duct cancer

A support group for anyone affected by bile duct cancer to come together, share experiences, and ask questions.

Bile duct stent replacement question

raptor13142
Posted by

My husband is scheduled to have his stents replaced on the 6th.  Can anyone share what kind of effect this has with any side effects, progression of CC, and are there any questions that I need to be asking before or after the procedure?

Mouse52
Posted by

Dear Raptor

Hope all went well. My husband has had 5 stent replacement operations. They placed a metal stent in his duct on the last one. Watch for infection..the stents get clogged easily. A good thermometer is your best friend. As for the stents doing something to the cancer....I don't think they do anything. This is such a tricky cancer...we live week by week. My husband was diagnosed with inoperable cholongio carcinoma in August of last year. He is on palliative chemotherapy. He experiences a lot of problems with digestion and nausea...but still here, still fighting this beast. Hope this helps and so sorry you are going through this too!

raptor13142
Posted by

Mouse52 thank you for your response.  The ERCP went well.  They also used the spyglass and found 5 more spots further up. I guess that this is to be expected.  The stint replace timing was good timing because he was starting to show the same symptoms that landed him in the hospital the first time.  He is feeling better now to the point that we bought a new truck Wednesday he got what he wanted and i have to admit that I like it too.  For a couple of days it was extremely nice not to be thinking about this cancer!  I do think that it did take its toll on him because yesterday he was sick and extremely tired.  I made him an early dinner, did his meds earlier than normal and he went to bed around 3pm and slept through the night.

Mouse I have a few questions for you, if you don't mind.

1. Why did they switch to metal stent? Is it because blockages were happening faster?

2. We do have an appointment with Oncology within the next couple of weeks. Did your husband start chemo right away or do they wait until it was needed for pain?

3.  How often does he have chemo, is it the standard IV for 2-3 hours and wear the pump for 3 days?

4. Is it weekly, bimonthly or once a month?

Mouse52
Posted by

I am so glad he is doing well! My husband had the typical symptoms (that I now know everyone has) last year. He went to a liver specialist and then it took forever to diagnose the cancer. Inoperable CCA. 

1) The Doc inserted two metal stents because the plastic ones kept getting infected. It happened four times after chemo. They were also worried that the cancer would close up the bile ducts permanently. He has two metal stents. He was infection free and ironically after I replied to you we ended up in hospital on Thursday because they had to put a stent in his duodenum because the cancer has blocked it. He is eating and feeling great today.

2) He started chemo straightaway. Two weeks on, one week off. IV Gem/CIS. Four hour infusion. He also injects himself with white cell count boosters for the five days of chemo weeks. I was told by the oncologist if the chemo is not given with regularity the cancer cells respond by growing faster. We will continue chemo until it doesn't work anymore. It is called palliative chemo and is there to keep him alive.

Bottom line if it is inoperable once they start chemo they have to continue. There is one standard treatment to begin with Cisplatin and Gemzar. When those become innefective they move to Gemzar and from there to another one. Everyone responds differently to chemo. Sometimes my husband feels okay, sometimes it wipes him out.


I hope this helps. It is so overwhelming at first. Feel free to ask questions. Evergone's journey is different  with this cancer. I asked all the same questions you are asking when this started.

raptor13142
Posted by

Mouse,

Thank you for answering all my questions and yes, it does help.

Vixen123
Posted by

Hi mouse52. I wish i'd thought to come on this forum last August. You seem to be experienced in this awful, evil disease. My lovely, brave mother died last October from bile duct cancer. She was 82. Had COPD. Which is a very serious chest condition. We thought that would end her life. She used to carry a book in her bag with DNR written in it. Plus she had asthma. But when she started getting new symptoms, which i'm not going into. We were so worried. She suddenly lost her sweet tooth & found certain foods too rich. She loved her cream slices. So when she started rejecting them. I knew something wasn't right!! Anyway. She was in & out of hospitals with different things. Was diagnosed last August. Then brought into UCH to have a stent fitted. My mother was a retired nurse. A very strong, brave & kind mother. Never moaned about her chest condition throughout her life. So when i saw her worrying & scared. It really terrified me. The stent didn't work. She had the most awful itchy skin. Drove her insane & was covered in bruises, her skin was so delicate. The evil disease changed her personality. Made her very aggressive in the hospital. So unlike her. She kept ringing the police & told them she was being beaten by the staff. (She wasn't!) she was just so confused. I couldn't bear to see her like that. She was my best friend. Anyway. She was going to be offered palliative care of Chemo. But the awful tumour had blocked the stent. Which in turn, caused sepsis. She was much too ill to start any treatment. Every day i was desperate for her to start the Chemo. But every day she got weaker. My lovely brother came over fr the States. Stayed on a mattress next to her bed in an awful room at barnet hospital. I couldn't do it. I would have had a breakdown. She was drifting in & out of consciousness. I went to say my goodbyes. The worst thing i've ever done in my whole life. She opened her eyes as i walked in. Then closed them. So, so weak. I pulled down the side of the bed. Stroked her hair & put my arms round her. No reaction. I'm glad. If she had cried, i would have collapsed. Kissed her hair & she she'd been the best, most perfect mother im the world. Told her don't worry about us. That i loved her so much. That i was grateful she was my mother. I had to go. I was ready to collapse. Heart wrenching. My brother & i went outside for some air. When the air hit me, i felt drunk. The relief was instant. I'd got to say goodbye to the most important person in my life. I'm now in my 40's. but i lost my lovely father when i was 17. He went out one day. Never came back. He had a masdive heart attack in Epping Forest. I never got to say goodbye to him. So being able to get closure with my mother meant everything to me. 

My lovely, special, strong, funny mother died 6 days later, on the 28th October. Roughly 6/7weeks after being diagnosed. Awful shock. But i'm glad she didn't go on suffering for months or even years. We all know how evil & devious this horrible disease is. It grows quietly, not showing it's ugly head until much later. 


Sorry to have droned on & been so depressing. But it does help to get things off your chest on here. Good luck with your husband mouse52. He sounds like a very strong, brave & determined man. I really admire that. You must be very strong emotionally aswell. Look after yourself too. X

Mouse52
Posted by

First, I am so sorry you lost your mum and Second you are not droning on. We all need to let it out and I am so glad for this site because it really helps to know that I am not alone. Thank you for your kind words. My husband is very brave and I wonder how he endures everything that this cancer is doing to him. I hope you have found some peace after such an awful experience and that one day they find a cure so people like us don't lose the ones we love to this hateful disease.

Vixen123
Posted by

Hi Mouse52. Hope everything's 'steady' with you at the moment. I can't sleep. That's why i'm so grateful for my tablet. Not sleeping pills! I'm watching Corrie with a cuppa at 2am. It's great. Perfect when you're feeling rundown. I had a dream last night. I didn't see my mum. But i heard her. She said my name & sounded worried. I'm going through a rough time at the mo. I have arthritis. Plus glaucoma & i suffer with iritis. Another eye condition. I went for an appointment at Moorfields eye hospital, glaucoma clinic on Monday. Was checked out. Said my eyes were good. Quiet at the moment. I couldn't believe it. Was so relieved. I would have rung my mum straight away. She would have been so happy. She went through alot with my health. I've had arthritis & iritis since i was 21. She was always there for me. So when i came out of the hospital, i felt a tinge of sadness. Bought some 'comfort' food instead. The next day i woke up with the most awful throbbing pain in my right eye. The iritis was back.  I'm on steroid eye drops every 2 hrs. So frustrating. But that's what emotional stress can do to your body. I'm also worried that i might either be developing diabetes or early menopause. Going to my GP today. Both have similar symptoms!! Really worried. That's why i feel my lovely kind mum 'came to me in my dream'. She sounded worried & when i woke up, there was a white feather lying next to me. Also. One Sunday. I was relaxing. Reading in the lounge. When i heard my clock radio turn on. Not very loud. But i went & turned it off. It kept turning itself on. 3/4 times. 9 days after my mum's funeral. I think she was saying she was ok. I hope to God she's Resting in Peace. She was such a kind, generous strong person. It's awful when awful things happen to good people. I wish you & your brave husband all the luck in the world. Email anytime you're down or bored!!! X