Progression signs of Bile Duct Cancer

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.

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

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

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

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