My Introduction
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Flowerlover……..I believe it is a control issue and it is justified. It is easy to feel betrayed by our bodies when it impairs our daily lives. Although you feel left out, I think your FIL wants to control his illness as best he can. You are doing everything right by supporting him in whatever he chooses to do. It is unlikely for the ascities to recede and I don’t believe it is advisable to recommend a second or more opinions from additional specialists. Dana Faber is an excellent institution treating a high volume of Cholangiocarcinoma patients. Your FIL is in good hands.
Hugs,
MarionThank you all for your responses. My FIL is still in the hospital and they haven’t drained the fluid yet. i think they are checking to see if it is cancerous. It’s so hard to see him in pain. I would love to get him to another doctor for a 2nd or 3rd opinion but he won’t go. A family meeting isn’t possible even though all the kids are on the same page and get along. My FIL is used to being in charge and he wouldn’t tell us anything at the meeting and would be angry if we pushed him for answers. It’s like he is ignoring that he is sick. I wouldn’t want him to live like he can’t do anything and I wouldn’t want to be talking about his disease with him every time I saw him but it would be nice to know what the doctors told him, what it is recommended that eat or not eat, do or not do. I understand keeping his routine makes him feel better but I worry that he over does stuff and ends up in the hospital. For now we will take care of what we can without asking and try to keep his spirits up. Thank you again.
Dear Flowerlover,
I’m hoping others above answered your question, but wanted to chime in as well and welcome you to our group. Although my father (and even my husband) push the limits of what I think they should be doing, it is very hard for them to admit limitations. I also had one 89 year old relative tell me that she hated to give up doing things because she realized she would never get that capability back.
Best wishes to you and your family,
CatherineWelcome to the family, FlowerLover. We are a great family but one not everyone wants to be a part of. Matt is correct in that the fluid in his abdomen is called ascites and it is a sign that the liver is not working properly. The liver starts to get a hard and not process well so fluid/blood back up and then the clear part of the fluid in the blood leaks out into the abdomen. Normally the fluid is not infectious although once in awhile it will get that way from something else. Draining it is the only fix. They can put a permanent drain in and it can then be drained at home. As far as what he should eat, increasing his protein intake will help drawn some of the the fluid back into his blood.
Also watch closely for changes in his behavior. The liver cleans ammonia out of the body and if its not working properly then the ammonia builds up. It can cause changes in the brain which would manifest as a significant behavior changes often paranoid, call be hallucinating, agitated or some people get real lethargic and sleep a lot. If these start happening then I would get him to the ER.
One thing your husband could do is talk to his father about what his goals in life are now. Does he want to have everything do to prolong his life or is he just looking to love as comfortably as possible? I would recruit any other family members that are a part of this and have a family discussion so every one hears the same thing. If he wanting to fight then definitely a second or even third opinion. However if he wants to just be at home and be comfortable then it might be time to talk about hospice. They can keep him at home and comfortable. The sooner you can start that the better they can help.
As for mowing the lawn and overdoing it….that’s a man thing. My husband was still trying to do things he shouldn’t be doing even in the week before he passed. Your FIL is probably frustrated adn angry at the whole process…..and being a man makes it worse. He wants to stay busy and keep his normal life. I would say let him do it as long as he can…..yes, he is hurting and yes, he probably should let someone else do it but he still can. In the long run it probably won’t matter much. You might offer to make some easy to fix meals for in the freezer. Then just wait for when they need help and rather than offer to help just do it….or hire a lawn service for them.
Sorry things are so rough. My husband battled this for two years and there were times I shook my head and grimaced as he tried to do something…..his fingers and hands hurt so bad when he got cold but he was still hanging Christmas lights.
Good luck and keep us posted.
KrisV
Dear FlowerLover. I am so sorry to read about your FIL and agree with what Matt has written. Dana Farber is experienced with CC but sometimes another opinion from another ONC can be valuable. With that said, one of the most difficult things in life is to change places with our parents. Mine also were very independent but the time came for me to let them know I am here to take care of them now and sooner than later they really depended on me which is what I wanted. I am wondering if FIL is in any pain RX? I would be more comfortable with the situation if your husband could talk to the ONC and find out for sure what is going on. The only thing I have which may be of interest to you is a List of 10 signs the end is near. If you feel you want that just send me an email on this Board by clicking on my name to the left. Honestly I feel that you may need a family meeting to let them know that you want to be part of their team and that they cannot do this on their own. Best of luck.
Welcome to the site and I’m sorry to hear about your father in law.
The abdominal fluid buildup is called ascites and I believe that it is an advanced symptom of the cancer metastasis and it’s overall impact on the body. I believe the only relief for it is drainage (peritoneocentesis), which is temporary.
Has he gotten second and/or third opinions on treatment?
I’d highly recommend it, if not. Especially from one of the leading Cholangiocarcinoma institutions like Mayo Clinic (MN), Johns Hopkins (MD), or MD Anderson (TX)…
I’m sure others will chime in to welcome and provider their experience. Good luck and keep us posted!
-Matt
My father in law was diagnosed with a Klatskin Tumer in July 2014 after presenting with jaundice and gray stool. He was told it was inoperable. He had stents put in in August 2014 and began a round of Chemo and then Radiation. He tolerated the treatments well and other than some fatigue felt good. In October he started a pattern that seems to repeat every four to six weeks. He develops a high fever, ends up in the hospital and on antibiotics. The medicine clears the infection and they send him home. He has had his stents replaced 3 or 4 times already.
Recently a new symptom has occurred. After his last fever, antibiotic, hospital stay he went home and a after a couple of days he became very bloated from fluid in the abdominal cavity. He went to the doctor who tested the fluid for infection and then proceeded to drain 6.5 pounds of fluid. He was then released home. Unfortuneatly, he almost immeadiately became bloated again. This past weekend (over two weeks since the last drain) we were very busy with my daughters college graduation and dad participated in as many events as he had the energy for. He gets tired so easily. His belly continued to grow. He looked like he was 9 months pregnant with twins. The graduation was out of state so my husband drove his parents home and they drove directly to the hospital. He is being treated at Brigham and Women’s/Dana Farber in Boston. We believe he is getting good care. They have tested the fluid again. He has an infection but I’m not sure if the fluid is infected. They are treating the infection and then after that will drain the fluid.
Here is where I was hoping the group could help. We are a very close family but my in-laws are very independent and private. If asked they decline any help. My father in law cut his rather large lawn last week over 3 or 4 hours rather than call my husband a stay at home dad to come help. If we just stop by and try to do yard work we are sent packing. It is difficult to balance respecting their choices with worrying that he is harming his health by over doing. Because of their privacy we have no idea what he should or shouldn’t be doing or eating or how we can help. It’s scary for us all not to know what is happening and what if anything we should be doing to help. I have been trying to find out what symptoms or side effects we might see or expect as his disease progresses. Is it normal with this disease for him to develop an infection and fever on a 4 to 6 week schedule? What about this fluid bloating? What’s causing it? If we ask him or my mother in law its no big deal and the infection or bloating isn’t likely to happen again.
Could someone recommend a book, website etc that can help us understand the “typical” if any symptoms of the disease as it progresses. What is this bloating? why is it happening? Anything he should do or not do to keep it from happening again. Any information would be so appreciated. This man is so loved and a patriach of our family. Dealing with disease without any information makes us worry even more. Thank you in advance for your counsel.
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