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I think it is common with liver problems and bile build up. We were told it varies with each person the effect it will have. For example, you could have it built up a great amount and no confusion or very little build up a lots of confusion. My dad ended up being hospitalized because he couldn’t remember who we were or his birthday etc. Of course he was feeling so poorly and his billiruben level had shot up too. The doctors hadn’t told us this could happen either. Personally, I believe doctors often treat symptoms that arise not knowing if the person will experience it at all. Which is a good thing to not add medication to the mix it if will not become an issue. It just did with my dad.
Thanks for your post. My dad has been taking lactulose for a few weeks now ever since has last hospital stay. So far so good. He is a lot less confused and has been able to stay out of the hospital the longest amount of time all summer. Knock on wood. He had a dose of Gemzar last week and will hopefully have another next Monday. The clinic will do blood work before treatment. My dad, however, has had more pain recently. He is taking morphine pills that really help. He gets extremely tired easily. He is still eating but very light. Since May he has lost about 30 pounds. His doctors wanted him to go into hospice but he wanted to give chemo a try. He has been really brave. I see a gradual decline each day. It is difficult to see so many things taken away from him little by little
My dad had his first dose of gemzar on Monday. Yesterday was one of his best days and today is one of his worst days. He is just not feeling well. No energy and has been in bed most of the day. He is also really down because his brother was not able to come visit him from out of town as planned today. He is noy coping well today at all. It hurts to see him so miserable. I would do anything for him to feel a bit better. Bummer.
Manish- My dad sounds like he is about the same place. He was diagnosised in May. We are not moving forward anymore. His cancer is in the biliary tract, tissue outside (liver), gall bladder, and head of pancreas. He tried a surgerical resectioin and it was not successful. They didn’t take anything out not even his gallbladder. He is on his second plastic stent and they will not insert another one. They are not even considering a drain bag. His billirubin level is around 8. He was suppose to begin chemo a couple of weeks ago and that was postponed due to infections. We go to the onocologist this Thursday to see if he is still able to have chemo. I think it would be too hard on him. My dad has very little energy and snoozes most of the day off and on. We’ve even had home health hang a saline bag Monday, Wednesday, and Friday for rehydration. They doctors at the hospital want him to go into hospice and he will have to make that decision after talking with the onocolgist Thursday. Best of luck to your dad and you.
Hi All, my dad’s scan showed the stent is in place. Whether or not it is doing its job is another question. They are going to decide tomorrow on an external bile bag to drain bile. My dad’s billiruben level is still high at about 9. He is also going to receive IV fluids next week at home on Mon. Wed. and Fri. through home health. The doctors really want my dad to consider hospice. My dad wants to see the onocologist for a consult first. (He was suppose to start chemo but never got there.) My dad has had such a busy difficult summer. He told the nurse this morning that he’d pay for Red Lobster if she would get him out of there. His confusion is a little better, but the doctor told him this morning that he shouldn’t drive anymore. He is quite a character.
They did a scan of the stent today and we have not been told the results. Last week he was in the hospital with a GI infection possibly from the stent replacement the week before. He has had 2 plastic stents. The first one probably shifted or got blocked because he had a attempted resection. This stent who knows? The GI doctors that usually work on him are on vacation this week. I believe one of them is on call and will do any procedure that is needed. She is a female doctor and is top notch. We don’t know, at this point, what they will decide. We are waiting for them to get back to us this afternoon. My dad has been a trooper this whole summer!
Thank you so much for your responses and helpful information. He is taking lactulose in the hospital now and the confusion seems better. I will ask the doctor about the antiobiotic. He has another issue though. Last week in the hospital his biliruben level was 3 and now it is 10 and climbing. It seems his two week old stent (plastic) is having issues. The doctor doesn’t think it is disease progression at this point. They are deciding what to do. I’m concerned they will insert an external drain bag. They have not tried implanting a metal stent, though.
Well my dad was suppose to begin his chemo tomorrow, but I had to call a cancel his appointment. He is in the hospital with a blood infection. The doctors are now trying to determine if it is an infected port or an infection Of his GI tract. They took a blood sample from the port for culture growth. If it comes back positive the port has to come out. If not, which we are praying, the infection will be treated with cipiro for two weeks. They will then draw cultures to make sure the infection has been killed. We are still unsure if he will be able to get a chemo treatment while being treated for the infection. One doctor says no chemo until infection is gone. Another says chemo can begin once the infection is under control. It was really difficult to cancel his appointment. He is taking everything pretty well considering.
Thanks, hope I wasn’t offensive with the pot hole comment. It’s just our way of dealing with this chain of events. My concern is if this infection is determined to be chemo port related it will have to come out. This will delay my dad’s chemo by about two more weeks. It will mean another port will need to be placed on the other side or possibly a pic line, which I have heard are good. Good news is they are consulting with his oncologist while he is in the hospital and an infection control specialist to determine the source of the infection. I can’t hardly bring myself to call the oncologist’s office to cancel his appointment for Thursday but will do so tomorrow. She will probably come into his room tomorrow anyway.
Thanks, my dad has experienced these chills in the past before diagnosis and now recently. He has a slight temperature of 99 with the last few occurrences. He did not want to go to the hospital and came up with the idea of home health services to come and draw his blood with a doctor’s order. (He has been hospitalized 3 times in a month) It worked and luckily the results for infection were negative. Also with the chills, my dad’s jaw shook uncontrollable for a short time. That was hard to see him go through. I’ve used this site so much in the last couple of months. Everyone has been so helpful.
My dad tried an attempted resection this June. Nothing was able to be done because the surgeon discovered that the cancer had spread to the pancreas. The surgeon said he would not have gotten any clear margins plus he would have had to perform a whipple, as well as a resection. The surgeon said it was not in my dad’s best interest. My dad is going to begin chemo, gemzar, next week. He is experiencing chills and a slight fever at night if he has exerted himself during the day. We thought his new stent was infected and had blood work. No infection, though. He has had chills before diagnosis and thought he had the flu. This happened several times. I feel like some times we have moved very fast on all of this and then other times we are sitting still in the water. Hope you and your dad get some rest.
My dad just had his plastic stent changed and so far so good. He had chills and a low grade fever yesterday. We were concerned it was an infection so we called the doctor and home health care will draw some blood today to see if it is an infection. He is feeling a bit better today. He may have overdone it the day before as he went for a drive on his own with stops at two stores! This disease will give bouts of chills and fever, but we know stents are forgein to the body and can cause infection.
I read somewhere on this site water with lemon can thin bile.
Thanks for the posts….to answer a few questions….my dad is 75 with multiple health problems. The oncologist he is seeing is well recommended. She has viewed all operating notes from my dads attempted surgery. I believe she has chosen gemzar only because she believes it will give him quality time. I guess I wanted to know if there is anyone out there who has had gemzar only and what has been the result? Ex: how was it tolerated?did it keep biliruben levels down? Did it manage pain well? Extend life? Etc….
Thank u all, my dad called me today while I was off. My sister was with him. It was so nice to hear him talk a mile a minute. They gave him some blood to boost him up. He will get out of hospital tomorrow and then a fun 4th with the whole family. ( we have a rather small one). Hope everyone has a great fourth too. Thank u all for listening. It has really helped get through these roller coaster days.
Thank you all….and good news! My dad received a new stent tonight. (plastic) Hopefully tomorrow he will be on the road to some great days! My younger sister and her two girls are flying in from California on Saturday. We are so hopefully that our dad will enjoy their visit. It is such a relief to know he will be able to eat soon and enjoy life! Thank you all for your posts.
