Thanks for all the answers and kind words everybody. The pain is a little more manageable for him right now. Upon discussion with his Doctor, we increased all the pain killers and that seemed to work, at least for now. Doctor said once it stops working, we will put him on Fentanyl.

Gavin - Thanks! We got my dad's pain medicine in liquid form as well now. Sometimes he was having a hard time swallowing the pills.

My dad has been in a lot of pain for last couple of days. We are giving him a lot of morphine and diloudid due to which he spends most of his day sleeping. He is not talking much either. At this point, is there anything else that we can do to make him feel better?

Like always, thanks for all the love, support and advice.

thanks,
Andy

Thanks for all the information and kind words everybody. We ended up signing for Hospice last week. So far, dad has been okay, though when he get shoulder pains, it's sever. He has an appetite and enjoys his ice-cream couple of times a day. We had a big Father's day celebration yesterday, where most of our family was able to make it. He was pretty happy.

Again, I really appreciate all the support I get on this forum.

Thanks Lainy. We just called the Hospice service and we are going to sign up for it.

My dad's shoulder pain is getting worse. We are trying to treat it with Dilaudid and morphine but it's not working too well. He also had a high fever last night (we gave tylenol for that). My mom is still reluctant to call hospice care but I think we absolutely need to sign up for it at this point. Mom thinks that calling hospice care is the end, which is probably the case. I think my mom needs couple of days to emotionally accept it 

In the meantime, is there anything else that we can do for his pain?

Thanks for all the advice. I really appreciate it. Dad had a better day yesterday. He had some visitors and he was able to sit with them and talk. Mom is still reluctant to sign for Hospice but my sister is a nurse and she has taken some time off to be with him 24/7. 

Kris - I may send you an email if I have a hospice related question. Sooner or later, I'm pretty sure we will have to sign up for it.

thanks a bunch,
Andy

Thanks a lot for answering Lainy! It's a tough situation. I will keep you posted. We got him a walker and a wheelchair. I think getting him a hospital bed will help eventually.

Kindest Regards,
Andy

I have only posted couple of times in the past but I often find myself referring to the discussion boards here every time I have a question about my dad who was diagnosed in May 2013. It was stage IV Cholangioncarcinoma that had metastasized in his gallbladder and liver.   

Over last two years, he had undergone chemo, liver resection surgery, radiation therapy and more chemo. He was in and out of the hospital a lot but his (and my family's) goal was always for him to live as long as he can. Two weeks ago we had a dreadful conversation with his oncologist where he informed us that there is no therapy available for him anymore. He suggested comfort care. Couple of days after that his ammonia levels went up, he had internal bleeding and we took him to urgent care where doctors said that he might only have a few days. They said that he might not leave the hospital. He got lactulose, hydration and blood. That made him feel better and he was able to come back home.

We had a meeting with the hospice nurse this past weekend who gave us all the details on the program. She said that he will be able to go on hospice the same day he signs the paper. My mom is reluctant for him to go on hospice, mainly because she is denial. Other reason is that in the past blood transfusion had made my dad feel better and hospice won't allow that. Currently my dad feels tired/lethargic, he is aware but is sleeping a lot. His shoulder is hurting (on a scale of 1 to 10, he says the pain is 8. We are giving him dilaudid) - we suspect that it is due to a pulled (or weak) muscle. He constantly has a fever that we are treating with Tylenol. It seems that his weakness is a result of fevers.

Should I try to convince my mom to let dad go under Hospice care or should I wait and see if his situation improves?

I'll appreciate all opinions/suggestions. Thanks!

My dad was diagnosed with stage IV cholangiocarcinoma in May 2013. Since then, he has gone through several rounds of chemo, liver resection surgery, saw his cancer come back, more chemo, more radiation therapy and then some chemo. In the process, he has been hospitalized quite a few times because of side effects, heart problems etc.

Recently he develop a bad case of hand-foot syndrome. He also has a sore on his back. He had fevers but they have gotten better. We brought him to the hospital two days ago and they admitted him. He is not talking much and spends most of the day sleeping. He got his last chemo 2 weeks ago.  It's tough but I'm trying to get a realistic answer on if these are end of life symptoms or if these are just side-effects of chemo?

I just want to add - I have spend numerous hours reading discussions on this forum. And I'm extremely thankful to everyone who have shared their experiences on this dreadful disease.

Thank you so much. Those are exactly the two medicines they are using. They started Heparin yesterday and will start giving him Coumadin tonight.

I wish I found this website/blog earlier. It's better late than never. I'm on the site because my dad was diagnosed with this terrible disease earlier in the year and I will like to share his diagnosis/treatment so far -

My dad was diagnosed with advanced stage (stage 4) 'Gallbladder Cancer' in May, 2013 that had spread in the bile duct and right lobe of the liver (we later found out it was Cholangiocarcinoma after his liver resection surgery). Most surgeons at the time told my dad that he was inoperable and oncologists said that there is no cure. He had a plastic stent placed right away that helped with his jaundice. The stent clogged after 2 weeks and was replaced with a metal stent. We live fairly close to New York city and decided to go to Sloan-Kettering Memorial hospital. My dad's primary oncologist is Dr. Kenneth Yu. My family feels a great connection with him and he is a great oncologist. He told us not to lose hope and to take one day at a time.

From that point on, my dad received 4 cycles of Gemzhar/Cisplatin chemo treatment (2 weeks of chemo followed by a week off). The ct scan that followed these 4 cycles showed 20% shrinkage in the tumor. Our oncologist discussed my dad's case with the surgeons at Sloan-Kettering, who still thought that my dad was inoperable. At that point, we met with Dr. Myron Schwartz (great surgeon, seems to genuinely care about my dad) at Mt. Sinai hospital and he was willing to operate on my dad. We took the risk and my dad was operated on November 11th, 2013. He had a resection of his liver, bile duct and his gallbladder was removed. They also removed 12 of his lymph nodes, out of which 3 came back positive from the pathology. It was also found at this time that he had cholangiocarcinoma. He was discharged in a week.

After being at home for a week, he complained of pain in the abdomen and spiked a fever. Since then he has been in the hospital. CT scan showed a blood clot in his super mesenteric vein (connected to his intestine). I'm not sure if the blood clot is a result of his surgery or cancer or both. He is being treated with blood thinners at the moment at Mt. Sinai hospital. We are praying that blood clot goes away and he can come back home soon. We still take one day at a time.

andy