Progression signs of Bile Duct Cancer

Discussion Board Forums Introductions! Progression signs of Bile Duct Cancer

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  • #94856
    positivity
    Participant

    Carole,
    This is the place to share and be emotionally free as this is a very difficult experience in life. I am glad for this forum and for all the people who participate. You have done an incredible job by helping and sharing! It is a heartbreaking experience to see a close family member to get weaker, but remember you are present and helping, that’s what counts! Also, remember the poor prognosis in the beginning, but he outlived it.

    I started with the battle of chemo side effects and hope one day this is not the standard first choice in treatment. It’s interesting his RBC and WBC was not impacted, since that is a prime concern with chemo. Have you gone to another doctor? I wonder about pain. Does he do anything about this? Have you tried Cannabis oil? It seems if his blood count is normal, there should be something left to be done. (my opinion, not a medical professional)

    Regardless, take one day at a time and grieving is different for everyone, and maybe the kids need space to absorb everything. (not knowing nature of relationships) Maybe you can get advice from a children’s therapist on how to explain and work with your 5 year old.

    #94855
    darla
    Participant

    Dear Carole,

    Vent all you want or need to. It does help to get it all out there. I’m sorry things aren’t going well, but the fact that his blood counts are normal is a positive thing. It’s hard to know how things will go as this disease seems to affect every differently and is hard to predict. You are doing the best that you can in what is probably the worst situation you have or ever will have to face. Everyone deals with these things in there own way, so all you can do is be there to help and support in any way that you can, as we are all here to help and support you in any way that we are able to.

    Have you considered getting a second opinion from a different oncologist? Just a thought.

    Keep making the most of everyday, making more of those memories. Stay strong Carole you can do this and we are all here to help.

    Hugs,
    Darla

    #94854
    debnorcal
    Moderator

    Dear Carole,

    First, I want to belatedly welcome you to our group, I read your initial post a few weeks ago and have been following your husband’s story as time permits, but my time has been completely absorbed with a family issue that didn’t leave time for anything else, even postings here.

    I am glad that you found us because, as I’m sure you discovered, understanding, searching for treatments, and managing this disease is a monumental task., and we on this board collectively have a lot of experience and we can guide and support you. It sounds as though you have been doing an excellent job of guiding your husband through this nightmare. I wish there were more treatment options available to him at this point in the progression of his disease.

    I am glad that your husband’s immune system has not been impacted- he would be feeling worse if it were, and I am glad he has far exceeded his doctor’s prediction made back in August. Nevertheless, it does sound as though he is in late stage progression, which I am sure is heartbreaking. My prayers go out to you, your husband, and your entire family.

    Regarding the adult children in your family, of course I don’t know them or the family dynamics, but I do know that serious illness of a parent is a very difficult thing for all children to deal with, regardless of age. We all experience impending loss in our own way. For some, it is too painful and they may put an emotional wall up or try to keep busy and ignore the pain. Whatever their particular approach is, we can’t control the actions of our adult children. I would suggest you let them know that, even though it is difficult to see him in this situation, it would make their dad so happy if they would visit and maybe help with a task. (You have probably already done this). Then they will choose to spend time or not. For your young daughter, my heart just breaks. Talking to her in an age appropriate way about what to expect, and reassuring her that you are healthy and will be there for her, may be helpful. Just talking with her may give you some insight into her unspoken worries so that you can address them.

    I am sorry for the long message. I am keeping your family in my thoughts. Please lean on this group for support. Thank you for keeping us updated.

    Debbie

    #94853
    carryall
    Participant

    I know it has been a few weeks since posting. As an update, I met with my husbands oncologist to have him give me his honest feedback on my husbands situation. The first thing we discussed is if the chemo is actually working. The reason for this is since switching the type of chemo, it seems my husbands amount of fluid being drained just continues to increase. for four weeks now it has been between 8 to 8 1/2 liters of fluid. This is due to his liver not functioning correctly. The first week when he started this different round of chemo was 5 liters. His oncologist did agree and has ordered a new cat scan to see if the orange sized tumor in my husbands bile duct has reduced in size since the last cat scan. He did indicate that the difficult thing to predict with my husband is that his white and red blood counts are normal. His immune system has been perfect throughout the entire time he has been undergoing chemo. When my husband was first seen by the oncologist, he was in complete liver failure, completely yellow. The oncologist had given my husband 2 weeks to 2 months to live. This was last August 30th 2016. The Oncologist continues to state that my husband still being here is a complete miracle. All he could say is that if this chemo is not working, there is no other chemo that he can put him on and that there will be nothing we can do for my husband. He told me that my husband will continue to grow weaker and weaker and eventually the cancer will take him. At this point I am appreciating every day that I have with my husband and making the best memories that I can. It is so hard to watch him getting weaker and weaker. His adult children don’t seem to care to come around and help him with anything. They act as if he is already dead, especially his oldest son. It hurts so much because I know that he needs their help with so many things. He wants to make sure that all of his projects are completed so I wont have to worry. I keep telling him it is ok, but I know it is really frustrating him. He gets dizzy a lot and most recently passed out at the store. His five year old is now afraid her mommy is going to die and that she will never get to see me either. This is tough. Thanks for letting me vent. Thank you for the support and love

    Carole

    #94852
    marions
    Moderator

    Carryall……my heart breaks for all and especially for his little girl.

    You may want to inquire with the oncologist and your husband about the possibility of involving Hospice. My husband refused, but most others are open to the idea. It’s a great organization and with their help you are supported in numerous ways.

    With all the sadness there is a preciousness in that you can focus solely on each other and make everlasting memories.

    My heart is with you

    Hugs and love
    Marion

    #94851
    carryall
    Participant

    Hi everyone, thank you to your honest responses,

    I appreciate all the information you have provided. I know that my husband is on borrowed time and realize this is his last summer and hope he is here to enjoy with our family. Every week he has the fluid drained from his abdomen it increases. The first week he went in it was 5 liters, the next week, 5 1/2 and so on. Today he had 8 liters drained.

    My husbands next appointment with the oncologist is this next Tuesday. I plan to go and want to meet with him individually as we will have my husbands almost 5 year old daughter. It breaks my heart that she will not have her daddy for much longer. I don’t want her to have to hear the conversation I need to have with the oncologist.

    Thank you again, for all your love and support.

    Carryall

    #94850
    tiah
    Member

    Hi Carryall,

    The experience with my mother was she went from feeling fine and on chemo, (gem/cis) to progression and ascites. She had a total of 4 paracentesis but only survived 6 weeks once ascites developed. We really wish we were told earlier how much time we were looking at. Unfortunately she was unlucky but some people do survive longer, however her kidneys started to fail as a result of the liver failure.

    We had to take her to hospital because she became confused (due to low sodium and also accumulation of ammonia because the liver wasn’t clearing it). They treated a suspected infection which may have been introduced when having the drains. Unfortunately they couldn’t treat the liver failure.

    Keep an eye out for any signs such as internal bleeding, confusion, vomiting, jaundice or fever as these are symptoms of infection and severe liver disease, and go to the hospital straight away. Sit the doctors down and ask what time frame you are looking at, however it can be very difficult to predict.

    All the best

    #94849
    darla
    Participant

    Carole,

    I agree with Marion on this. It is time for the oncologist to stop avoiding and give you his honest opinion of what is going on and a time frame. You both deserve to know what his prognosis is.

    The ascites is generally a sign of end stage disease, but as Marion said the time frame is hard to define. As you probably already know from reading on this site, every case is different and there is no real way to put a time frame on things but the oncologist should be able to give you some idea of where his disease is at and what to expect. The more you know the better it will help you to prepare for and understand what is going on. I think you need to have an honest and open discussion with the oncologist and let him know that you want to know what is going on and what to expect.

    Hoping you will be able to get some answers soon. Please up date us as to how things are going when you can. Take care.

    Love & Hugs,
    Darla

    #94848
    marions
    Moderator

    Carryall……your mother in-laws oncologist correctly identified the abdominal fluid retention (ascites) related to liver scarring. Most often ascites is related to portal hypertension i.e. high blood pressure in the veins that bring blood to the liver.

    Ascities can also be caused by an infection, inflammation, or perhaps an injury to the liver.

    Based on my personal experience and numerous discussion with patients and physicians, ascites most often is a sign of of late stage disease.

    From what I have learned there is no definite timeline anyone can give you. I recall a lady on this site who had weekly abdominal paracentesis (fluid removal) for 2 years. However; she was an exception. I don’t think you are looking at years, but several months would not be out of the question.

    I really think your oncologist should have a heart to heart talk with you. It’s not fair to avoid the question.

    Hoping for others to chime in on this sensitive issue.

    Hugs and love,

    Marion

    #13287
    carryall
    Participant

    This is my first time posting to this site. My husband was diagnosed with Bile Duct Cancer last August. What is the progression signs to look for? His cancer is non-operable They are concerned because they saw some nodules on his abdomen.

    For the past four weeks he has experienced bloating and has had 5 -6 liters of fluid drained each week. Is the ascites the first sign of the end? If so what can I expect…I really want to know how this is going to generally progress.

    His oncologist doesn’t really answer my questions. Another oncologist that I my mother in law spoke with the other day indicated that the ascites is due to the liver not functioning properly. I guess I am looking for anyone who has experienced these signs with a loved one as to really how much more time I have with my sweet companion. I make every moment count, but I really want to be prepared mentally.

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