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  • in reply to: My Dad and questions #45467

    Hi Libeco,

    I’m so sorry you had to find us, I understand what you are going through. My
    Mum also had a bypass surgery along with metal stents and it worked for almost 2.5 years.. For about 6 months she had an external drain so I do have some information on how to handle external drains. Coming to your questions:

    1. External drains are def more prone to infections which lead to cholangitis (bile duct inflammation due to infection) but then keeping the area dry and clean really helps. My advice for you is to keep checking the dressing to see if it’s wet and gooey, if it is then get it changed as often as required by a qualified nurse. I do think it’s better to have a nurse who’s got some experience with external drains, etc. Also I learnt to change the dressing and sort of clean up the area myself. I don’t know about any redness near the area, I don’t think it’s a cause of concern but do check with the doctor.

    2. Chemotherapy at low doses is not recommended since it won’t be effective, that’s what my doctor told me. Also if he has high jaundice chemotherapy is not suggested at all. He’s 88 and I can’t say how he would be able to take any side effects of chemotherapy as well.

    3. The end stage is very difficult to say, for my mum she had high jaundice, ascites ( fluid collection in her abdomen and legs) and she stRted feeling very tired, didn’t eat much, slowly became immobile and then lost her consciousness. Basically these are symptoms of end stage liver disease, I can’t say exactly about your dad because it’s different for each person.

    4. Cherish every second you have with him, talk to him about all the good things, make him laugh and feel better and that you are there for him. The one comfort they will get is seeing loved ones around them happy with their lives, and being by their side.

    I wish you and your dad, mum all the best!


    in reply to: Conflicting information on CC #45402


    My mum was diagnosed with extrahepatic cc in oct 2007, she was absolutely normal after her bypass surgery and stents without any symptoms till march 2010, she passed away last month. There definitely does seem to be 2 types of cc, one very fast and the other slow.. It hurt me so much when I read posts here about a lot of people dying pretty fast from diagnosis.

    You are def lucky to have a slow growing cc, and I pray and hope for your well being!


    in reply to: Mom was diagnosed Sunday 11/21 #44603

    Hi Julie,

    I’m sorry about your mum! I just wanted to give you some advice:

    1. Have you got a liver function test done recently after placing the external drains? it’ll tell if the drains are working, if her bilirubin is coming down which is important.

    2. Is surgery possible if the bilirubin levels come down? is that the only reason she hasn’t been taken into surgery yet? find out from the doctor.

    3. Find out from the doctor about stents to unblock the bile ducts, if they are required.. I’m not sure if they’ll stent the bile ducts before surgery.

    4. If surgery isn’t possible discuss the possiblity of starting chemotherapy with an oncologist (bilirubin levels need to be low to start chemo).

    5. Can you give us more information about your mum’s condition.. where exactly are all the tumors seen? what are her symptoms?

    Be strong and always remember, never lose hope! My mum was diagnosed in 2007, and the doctors gave her 8 months but she went on for 3 years mostly with a very good quality of life! Also make sure you take a second or even a third opinion.

    I wish you and your mom all the best!


    in reply to: Mum’s 3 years from diagnosis #44372

    Thanks so much everyone for the lovely replies! It makes me feel so much better.


    P.S – I’m not a girl, I’m my mum’s second son :)

    in reply to: new member #44281

    Hi Ziggy,

    What chemo regime is your husband on? Does he have any stents in place to relieve any blockages? Why does your doctor think a transplant isn’t a viable option? does it involve the blood vessels?

    My mum was on 11 cycles of gemox (gemcitabine & oxiplatin) and she never really had any adverse side effects. The time she had her chemo, her stents were patent for almost 18 months.. so I would think chemo definitely helped. I also think your husband should start trying alternate therapies (homepathy or ayurvedic, etc).. my mum started homeo and ayurvedic too late, that’s what I think.. I’ve heard of these alternate therapies working.

    I feel that his fatigue could be because his liver has taken a beating because of the disease as well as the chemo. He can also start taking milk thistle and dandeloin tablets from Nutrilite, which helps in the functioning and regeneration of the liver.


    in reply to: Scan results for my mum…confused and annoyed #44319


    If the primary tumor is in the pancreas, then it’s pancreatic cancer and not cholangiocarcinoma.. If it is, then pancreatic cancer can be reversed completely with chemotherapy.. That’s what I’ve read!


    in reply to: Please advice – mum’s condition #44159

    Gavin & Marion,

    Thanks for responding. The nurse is with her 24 hours, but she of course isn’t qualified enough to assess the situation as such. But then mum was in almost the same sleepy, tired condition when the doctor saw her on Tuesday, he told us she’s experiencing liver failure and the toxins in the body are all collecting and affecting her brain causing her to be sleepy drowsy all the time (severe end stage liver disease has affected her cerebral function).

    He told us that gradually she’ll slip into a coma and that’s about it. I still haven’t got through to the doctor to find out about the IV fluids. This is so hard for my family and me. It pains me so much to see her like this.

    in reply to: Please advice – mum’s condition #44156


    Thanks for responding, we have a full time nurse to take care of her. On Tuesday, our doctor told us to take her home and keep her comfortable.. he said there isn’t anything we can do now, she’s on lasix shots for the ascites and urine. Couldn’t get through to him right now to find out about the IV fluids.

    in reply to: Has anyone tried or heard about liver dialysis? #44044

    Marion & Patty

    Thanks so much for helping me out with this!


    in reply to: mum’s liver failing #43975

    Thank you everyone for all the support, I really appreciate the help and advice everyone’s given me. I’m trying to spend as much time with her as I can, she’s become so unresponsive and weak, it troubles me so much, makes me cry all the time, killing me from within! I wish god could take some of my life and give it to her.

    She did everything she ever could for me, I remember every moment everything she ever did for me, for my dad and for my brother! It’s so upsetting that she’s only 56 and I’m just 24, I never ever thought I could lose my mom at this age, always thought I would see her grow old with me!

    The hospice movement is still in it’s infancy in India, I just checked on that.. we are getting a nurse to stay at home to take care of her.

    Thanks everyone for everything!


    in reply to: Mom’s high bilirubin levels #43167

    Thanks for responding.. I just spoke to the doctor, and he said the same thing that her liver needs to recover from the constant assault it’s undergone because of the infection, blockage and antibiotics. But he’s not sure if it actually will ever recover, and that we have to accept all this.

    She hasnt been checked for any abscess, that’s a good point, will take it up with the doctor.

    Hope your dad recovers, and I wish you and him all the best!


    in reply to: Mom’s high bilirubin levels #43165

    Thanks for responding everyone.. They’ve cultured the bacteria, and also he’s finished 2 courses of antibiotics.. But still has fever at least once a day. We just came back home from the hospital, they’ve drained the fluid out. Doctors say the drain isn’t clogged, and there is infection, but the bilirubin is high because her liver isn’t functioning as well because of repeated clogging and infections.

    They say we should give it sometime for her liver to heal, and hopefully it will heal! The Fever is better than before, but then they say we can’t give get more antibiotics now.. So hopefully tht will subside on it’s own! Is there any medication to improve liver function?

    in reply to: elevated bilirubin, normal enzymes , no itching! #38685

    Hi Marion,

    Thanks for responding!

    Why would you say my mum’s case is one of the more unusual ones? Is it because of the way its progressing? are bypass surgeries not common for cc?

    Thanks for all your wishes!


    in reply to: elevated bilirubin, normal enzymes , no itching! #38684

    Hi Gavin,

    Good to hear from you too! Mum’s undergoing the same thing right now, sudden jaundice and no itching unlike when she got diagnosed in 2007.. any idea why that happens? I never thought she would get jaundice even with all the ducts draining.. strange!

    My doctor spoke about cyberknife, he said we could give it a try, and he also said we can try PDT.. but he said it might or might not help.. we never know. Cyberknife and PDT are both available in India (cyberknife was always available here but I didn’t know about PDT till my doc told me.. but I think it will be the first time using PDT at least for cc in Bangalore). I also consulted 4 other doctors, one said cyberknife doesn’t work for cc.. and others said we can try.. one more said chemo wasn’t an option again since she already had chemo (gemox).. one more doc recommended that we should contact one Dr.Nomura in Nagoya, Japan since that’s a reference centre where cc cases around the world are directed to ( they supposedly have the most experience dealing with cc in the world). I’m so confused with all these opinions!

    Also, i tried contacting hospitals in the UK for PDT, I got information that PDT trials have stopped and is not used as a treatment anymore because of high mortality rates.. is this true?

    Thanks so much for responding Gavin! My best wishes for you too!


    in reply to: Metal stents blocked #37190


    Thanks! Mum is feeling much better now. She’s had permanent metal stents all the time (mesh expandable type), she’s never had any other type of stents, and it did last for 18 months (jan 2008 was the first stenting, the second was in july 2009). The approx time they say for the stents is 8-10 months, but it all depends upon the growth of the tumor and other factors (biliary sludge, granulation tissue, strictures, etc), so you can never say!

    Mum had a CA-19-9 blood test almost 2-3 yrs back (3 months after diagnosis), and it was totally normal and within range. My doc says those kind of tumor marker tests for cc are not reliable, so they can’t be used for any kind of diagnosis for cc, they are very high in some people and absolutely normal in others (like my mum).

    Best wishes to you!


Viewing 15 posts - 1 through 15 (of 22 total)