I think that is too early to see any effect. My dad had his first CT scan after treatment at 3 months. His ended up shrinking but he never had an ultrasound done.
Re: Biliruben trending down - Need to pick a next step (1 replies, posted in General Discussion)
My dad did gem/cis treatment. It gave him a year. He was diagnosed at stage IV.
He tolerated the chemo very well.
Topic: Bile Duct Cancer and Myleoproliferative Disorder (2 replies, posted in General Discussion)
When I talked to my dad's nurse she said he had Myleoprolferative Disorder also. He had talked about also being diagnosed with leukemia.
Is this very common?
Well I finally got to talk to my dad's nurse. He passed in April.
He had extrahepatic bile duct cancer stage IV. The doc gave him a year with chemo....it was almost a year to the date of diagnosis that he passed.
They think it came from the gallbladder but can't be sure. He had physicals each year for his employment and nothing ever came up. The nurse said that even when he passed his liver enzymes were not abnormal.
This cancer is my enemy now. I have asked my company to donate to this organization.
Re: How much pain to expect with cholangiocarcinoma? (11 replies, posted in General Discussion)
I don't know if this helps....
My dad died from this cancer in April of this year. At the end he didn't describe it as "pain" but as discomfort. He used to say I know pain...I have had kidney stones. This isn't pain it is more like discomfort...having the flu.
Now saying that he was on a very high dose of morphine. He just was not able to sleep. Once they got the morphine dose almost figured out he passed away. Now he also had ascites and wasn't eating.
I hear you. I am 45 and my father died from this a couple of months ago at 66. I don't think they would give you a cancer screening. One of my dad's nurses said to get my liver enzymes checked yearly but some people have normal enzymes then find out they have stage IV CC.
Should I not drink at all (I like a glass a wine per day).....should I not ever take any medications.....I don't know. It seems like people are healthy and get this cancer. My dad smoked but he wasn't overweight. He was on BP meds but overall looked great and had a physical every year (although I don't think they drew a liver panel).
I don't know. I am having a problem coming to terms with this myself. I am just thinking at 66 I will die.
Hi Heather...I am in Round Rock Tx. My father passed away in April of this year. His CT scan showed tumors on his oementum and then he began having ascites. He turned quickly after that. I would say it was about a month. He was not eating and would projectile vomit bile. His body was basically shutting down at that point.
Originally they didn't think the ascites was a big deal but once drained it came back again quickly. He was probably drained 3-4 times before he passed. I don't think the ascites was a "sign" but I do think that the oementum tumors and his lack of appetite were.
I absolutely hate this cancer.
Does anyone know if Bile Duct Cancer is a primary cancer or if it develops from a primary cancer within the body?
My father died from CC April of this year. I can't stop thinking about how I may only have 20 or so years left until I get the cancer. How do others deal with this?
So basically there are no "set" symptoms. Even drawing liver enzymes doesn't seem to be conclusive as some have normal levels.
I am so paranoid about this since my dad just passed from it. I know it is a maybe maybe not but I am an analytical mind that can't deal with that.
I am just curious about this cancer. How were those of you with cc diagnosed? Was it via liver bloodwork, biopsy, etc? What caused you to go to the doctor prior to your diagnosis?
My dad went to the doctor due to the terrible itching he had and dark urine. It was then he had liver enzymes done and it was diagnosed by a process of elimination...no biopsy.
I can tell you what happened to my dad. After the gem/cis stopped working he was waiting for his new chemo. That is when he started to get ascites. They drained it then it came back a week later; drained it again. He was vomiting (projectile) and not able to eat or sleep. This continued and was hospitalized many times. This happened over the course of a month until he passed. He described it not as pain but as discomfort. Like having the flu 10 times over. He was not eating and dropped a lot of weight. He was very aware of what was happening and could continue conversations. The last week I think he was having some hallucinations but that could have been from the morphine. Along with the throwing up his kidney function went caput. Slowly his organ systems were shutting down.
After a successful year of chemo my dad has passed.
The last month of this was horrible. He was vomiting bile and not able to eat. He was in his home until the last week of this disease. He was moved to hospice and spent 2 days there before he left us. I was with him the 5 days before he passed and I am glad I was there. I feel he wanted to make sure I had all of his papers and was gone before he let go.
I am having a hard time grieving and taking care of everything. I really miss him.
Topic: Need Some Insight...How Long Please Be Honest (3 replies, posted in General Discussion)
My dad was moved to hospice. He is continually vomiting bile and can't eat. How long can somebody last like that?
He doesn't have an obstruction...all of the xrays and CT scans were negative for that. He is getting ascites. He has lost about 50 pounds and looks 90yrs old and he is only 66.
Typically what can I expect???
Topic: Please tell me I am doing the right thing.... (10 replies, posted in General Discussion)
My dad was diagnosed with Stage IV bile duct cancer last year. Well he has taken a turn for the worse. His urine output is only 150 mls per day, he has recurring ascites, can't eat, isn't sleeping well. The doc says that his intestines are not working causing the intestine fluid to go into his stomach which he throws up...brown/green stuff. He isn't eating. His creatinine is 2.8 which the doc says his kidneys are going downhill. He is more alert today after the parencenthesis.
The decision was that he was going to hospice care in a nursing facility. I feel guilty. I have to take power of attorney he wants me to pay his bills. This seems to be so technical and cold at this point. Getting stuff ready for him to die. The doc said his heartrate goes up (120) and bp goes down 70/39. She says he doesn't have long (maybe days or weeks)...but again he perked up after the belly tap. When I saw him last night and the nights before I thought he was on his way to heaven...
My father was on gem/cis and then they found some nodules on his omentum. They continued the gem/cis then did a scan. The nodules grew and they saw others. The switched him to oxaliplatin and 5FU.
Their thought was that since some grew they were becoming resistant to the gem/cis.
I talked to my dad today. He is angry...well angry is an understatement. He doesn't feel well and is on oxaliplatin and 5FU. He says he goes from bed to the couch and vice versa. This is his first round of this chemo. He says if he doesn't feel better he is going to stop. He says the NP doesn't listen to him, doctors dont do anything, wants to just die....
I am thinking of maybe starting (or suggesting) Hospice to him. Can they prescribe pain, nausea meds? Any other ideas? I think he is not going to last with this. He is always angry and he has a right.....this cancer is horrible.
My family has no history of cancer. That is why it was such a surprise. Now my dad smokes...that may play into it somewhat. He did work at a nuclear power plant...as a guard. From what I read this is just a mutation that occurrs--not inherited. I have read that they think that maybe it shows in families because they are exposed to the same thing that caused the cell mutation but a lot of times it is just a spontaneous occurrence in one person.
How do others deal with maybe getting this cancer? Are you extremely worried or because the cancer is so rare not really concerned?
Does anyone have a mother or father that has had bile duct cancer and then found out that they have bile duct cancer?
If so, how did you find out?
The Nurse Practitioner for my dad said all I can do is go for a physical and have them check my liver enzymes.
Iowagirl-who is your doctor at Mayo? My father is going to Mayo also. He does not like the doctors.
Does anyone have any good ideas for the relief of neuopathy (besides stopping oxaliplatin). My dad is starting this and I want to be able to give him some ideas.
Well I talked to the NP. That was good. I told her that I was going to take a more active part. My dad is shy so he would say I feel bloated and not really explain. I told her ya he is pretty shy and where you or I would be Hey I am so bloated I can't take it....he would say I feel bloated.
I also told her he is scared and we need to help him. Overall she said he is doing well with treatment and is doing much better than she thought he would...he was initially diagnosed with Stage IV Bile duct cancer.
Ok my dad is in the hospital with recurrent ascites. I talked to his nurse practitioner at Mayo in Rochester. She said she was going to visit him today. She didn't visit! I am having serious reservations about how good Mayo is at this stuff. She didn't even call him and she has been on his case from the start. He never sees his oncologist only this nurse practitioner that works for the oncologist.
I tried to call her. Being it is 6pm she is gone for the day and the phone just rings!
The Gem/Cis that he was on is no longer working and they are going to switch him to 5 FU.
Please help with some suggestions.
My dad is going in to get his port inserted. He will start Oxaliplatin and 5-FU next week.
He is feeling really tired he says and nothing tastes good anymore. He says he feels like he has the beginning of the flu every day. I think he is ready to say no more.
Is there any suggestions for the tiredness or the flu-like feeling? Any suggestions on food?
Well my dad went in for his chemo with a lot of bloating. They did a CT scan. They found a spot on his liver and his pancreas and the nodules on his omentum grew.
They now want to do Oxaliplatin and 5 FU as the chemo for a secondary defense. They said this will work for about 16 wks then there is nothing they can do.