1

(82 replies, posted in Introductions!)

It's been a very tough month for my family. My dad has passed away last Sat in the hospital. He stated in the hospital for 3 weeks, went to nursing home for 2 weeks. Just 1 month after he went to the hospital for the drain.... It happened so fast. I scheduled a radiation re-evaluation appointment for him but it's too late. Maybe it's not that bad... radiation is not comfortable anyway.

I hope he's in a good place, happy and rest. I appreciate everyone's support! I'll check back this forum and show my support to others too. take care!

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(82 replies, posted in Introductions!)

My dad's figures pretty much stable. Getting little better and better, but not quickly a lot better. I am afraid they'll stop treating him even the infection .... I found out Dr. Diehl's mom also very sick and he left town. No wonder there was a bit of delay during the time we were in the hospital. Anway...

Doc said because the liver function not good, we can't treat the cancer; because of the cancer making him weak, liver function is not good. This is catch 22. We asked doc to help ask again why can't we drain the right side. If right side is also drain, it must be able to help bring the numbers better. But innervation radiologist doesn't agree to do it. Reason is not very clear, but some doc said not safe to do it. May kill him right away if not aim/drain the right spot? Doc will help ask innervation radiologist again...

I have talked to my dad all I need to tell him. He told me to be brave. ......Praying.

Kristin, sorry to hear your story. It made me cried. My dad also has cc, just found out a month ago. He's old and weak while obstruction been going on for a month, he seems weaker. He had one side drained last Friday, seem much better, but today doctor said even it's improving, but he doesn't think it's improving fast enough it's an indication of liver function is not going to be good enough for treatment. I don't know what to say and I don't quite believe it.

One thing I've learned is, if your dad decided to have some treatments, go for consultation asap. May or may not start soon, but if he wants to do something, start early when he's stronger. Starts later he maybe weaker, would have less options.

You are in my prayers.... take care.

4

(82 replies, posted in Introductions!)

Thanks... I can only wait and see how it goes...

5

(82 replies, posted in Introductions!)

I asked the nurse, she said liver function came down a little today. was 80 in the past few days, today 60. bilirubin was 18 for 2 days, and 13, and now 10. She said they have not found heart detect. I see numbers improving, but not sure why doctor said it's not working. Doc said if left drain is working, the bilirubin should come down in 1-2 days. My dad's bilirubin staple for the 1st 2 days and come down a lot.

My guess maybe infection after they put in the drain in his left side that makes the numbers/heart rate/blood pressure swing. But bottom line is he's improving. He was not allowed to eat until yesterday and not allow to eat again. Any human being will be weak without eating. I need to be sure ask the nurse to have Dr. Fong look at my dad's whole case, not just dial a phone to call.

I am really hoping some doctor in this world can help him. Praying........

6

(82 replies, posted in Introductions!)

Thanks Pamela. Yes he's on antibiotic and on call doc said he's on the right one. They are doing blood culture to find out more.

I feel hard to believe he's so weak cannot take any treatment. I am not ready to lose hope yet, but doctor told me I should.

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(82 replies, posted in Introductions!)

I got a called from Dr. Diehl and he said my dad is very weak and ill. liver function is not good, otherwise; his bilirubin would have dropped in a day or so. It's dropping, but not dropping fast enough, means liver function damaged too much. He said my dad may have a heart detect last night. Liver function not good, my dad is weak because of the cancer. We can't treat him because liver function is weak. On top of everything, maybe a heart detect, if not heart detect, it's even worse means infection somewhere we don't know. ????? Conclusion is... he doesn't think my dad is qualify for any treatment, such as chemo or radiation. He said any chemo or radiation will kill him. He said my dad could have only days or weeks left. This sounds too crazy!!! I asked 2nd opinion with Dr. Fong. He said he's happy to speak with Dr. Fong if he calls. I told Dr. Fong's nurse...

I can't believe what's going on here..............it's hard for me to believe what I have heard. I don't know how much I can trust what I heard....My dad didn't have so many problems before he came in the hospital. Now we have so much going on. My mind is blank. I need to bring my mom in ICU tonight and my husband need to come visit. I am so upset.... I can't believe... still can't believe what he told me.

What should I do next??? What can I do now to help my dad? I don't want to lose him. I love him so much.

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(82 replies, posted in Introductions!)

Thanks Kris! The Sloan nurse told me if Dr. Fong sees my dad, he can also walk us to ONC. One day can see 2 doctors usually. Sounds great if we can work with someone locally, not NYC every treatment, that'll be great.

Dr. Schreibman seems good so far. He seems very much willing to work with NYC doctors. I like it.

Right now, my dad is back to ICU, I don't know what's the next step is. Trying to find out more. Hospital experience sucks. Horrible place.

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(82 replies, posted in Introductions!)

My dad was perfectly fine yesterday before I left to pick up my son. Doctor allows him to eat or drink.After I left, they changed his room. He said he's really cold, the nurses didn't know how to use the warm blanket.... and he chill again. The doc said breathing number not as good, sent him back to ICU again. I am so mad. Nobody calls me or explain to him what's going on. No translator phone was used. I am still trying to find out why they moved his room last night before ICU. This place sucks!!

One good thing is my dad's bilirubin is dropping. 18 over the weekend, 13 yesterday, 10 today. hopefully, it can drop more so that we can leave this place and seek for more treatments.

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(82 replies, posted in Introductions!)

Thank you Kris! What does pump do?

How long will you spend each visit in Sloan? Can surgon app + onc app in one day? I am closer to Sloan then you are. I'll take dad to Sloan, but he can't get out of here yet. Hopefully, we fix it soon. It's a hard commute to NYC no matter where people are, but I'll do my best.

The residence stopped by again said radiologist thinks right side smaller bile branches maybe blocked so much that the bile doesn't go to the main right duct. Radiologist doesn't think it's worthy to put drain or multiple drain there. Seems like radiologist gave up on draining the right side.

I asked them please talk again. We have to have a plan to do something. bilirubin 18 is still high...  this seems simple but why it's so difficult.

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(82 replies, posted in Introductions!)

So strange... I clicked submit, but seems I lost my post. Anyway...

Today Dr. Schreibman came very quickly in the morning. He seems good, most importantly, he tells us what we should do first, control the bilirubin down to below 3, we will have much more treatment options. right now, bilirubin is still high can't do much. Thanks God !!! Finally, there is a doc can tell me what we should do because ... not I ask doc should we do this or do that? He talked to the surgeon team. They'll find out more from radiologist since right side still not sure how's going and bilirubin doesn't drop/staple. To me it's a sign that left maybe ok, but right still blocked so bilirubin stable. I asked a few times, residence came, and more waiting... Dr. Schreibman recommand Sloan and Columbia Presbyterian too. Said can help us make appointments if we need. Sounds great. He seems good so far. Hope he'll be more in charge of my dad's case.

The orange mucus culture hasn't come back. STill testing. But Dr Schreibman said it should NOT be tumor spread, doesn't go to lung usually... Thanks God!!! 1 less thing to worry about.

Hopefully, radiologist can get back to us sooner so that we can drain the right side and move on to next treatment. We got stuck in the hospital here can't do anything. Dad is not happy with the nurses either. They don't help much, but if family members are here, they pretended to be nicer. Some really bad, some good. We want to get out of here asap.

12

(82 replies, posted in Introductions!)

Still no food is allowed. Will ask about it tomorrow. I seem to have a cold too. sad
Going to sleep. Hopefully tomorrow can bring good news. Whatever it is as long as its good news.
Thanks!!

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(82 replies, posted in Introductions!)

Dad left ICU. We were happy for a little while and then he cough with orange mucus once. pneumonia or what??? very angry. Tomorrow, I'll talk to all doctors/nurse about this. They are testing the culture for mucus. I hope dad is fine. Hopefully, it's not a big problem.

This whole experience sucks!!! I can't believe I am so unlucky one thing after another.

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(82 replies, posted in Introductions!)

The on call doc will look at the X-ray or films and give me some idea. Monday will talk to the radiologist and the surgon doc about the right side. Its hard to get in touch with doctors.
On call doc thinks he can eat need to confirm. They think he can leave icu today. Hopefully he will do much better soon. We want to leave the hospital ASAP too.

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(82 replies, posted in Introductions!)

I don't see how possible we can change hospital. It's a big move while he's with external drain on left side still under treatment for antibiotic/infection somewhere. I don't think he wants to move either. It seems dangerous to make a move right now. But next time, I'll ask Dr.Shreibman if we can go to St. Clare hospital, where he also goes to. That one seems to have nicer nurses. I had my 2 babies there, and they were very kind.

How long can people eat or drink after external drain? I am so concerned. Nurse said his system needs to rest, so cannot eat/drink. Otherwise, will hurt him more. We really need an ONC to take control of the situation... Hope Dr.Shreibman can help us. Praying...

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(82 replies, posted in Introductions!)

Dr.Shreibman was not available Fri when I called for the app. Monday morning I'll call the nurse to schedule an hospital app so that he can come see us. I think at this point, I need to tell Dr.Shreibman that we decided to be treated here in NJ near home with him. After we consult with Dr. Fong in the future, we'll get the Sloan's ONC for 2nd opinion.

GI doc did the right side plastic stent, internal, didn't work. Another doc/maybe Radiation department doc did the external drain on left side, working. This external drain doc said because the right side has a stent, he cannot do the external drain in the right side. Is this true? Does the right side stent has to be remove/ERCP again, before he can drain from right side externally?

For placing stents, doctor allows dad to eat, ERCP/out patient procedure. But he has external drain on the left side, doctor said he cannot eat or drink anything. Not sure when he can eat and drink again. He's so weak and felt hungry. I am getting crazy... While doc comes in different time that I am not here, they didn't give him translator phone either!! I need to complain about that.

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(82 replies, posted in Introductions!)

The nurses in morristown hospital are so so. under staff. About half of the nurses are good, but the other half, not paying attention. called for a long time no showing up. Some don't provide much care, have the cool feeling too. Some on call doctors are very meant to patients. I cannot believe hospital like this Ranking #1 in US news. They have big advertisement in the hallway... Maybe the standard is low. sad

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(82 replies, posted in Introductions!)

I found out they gave my dad antibiotic: Zoson? and Vango? My dad's fever was under control right away so more then one doctor said no need blood culture.

Dad's bile duct in left side of the liver drains ok, externally. But the bile duct in right side, with internal stent, didn't drain outside while the stent is not quiet working. The doc who did the external drain said cannot do right side because stent's in. These 2 days, nurse said bilirubin been very similar, 18 something, liver function still high. 18/80? While the residence of the surgeon came in, I told him bilirubin been similar after external drain. He said because right side still blocked. It's dangerous if right side still block isn't it? I asked what to do? He said could be replace a stent or drain externally on right side. I said the doc said because of the stent, cannot drain externally on right side. So sounds like it may need to do ERCP again to take the stent out, drain the right side externally?

I am so frustrated with all of these... My dad didn't eat anything since Thursday night, Fri had the drain they didn't let him eat/drink anything. He's very weak and felt hungry. If they need to redo the ERCP/drain right side externally.... means my dad may not be able to eat this coming week??? it's exhausted and very tired for him. We haven't started any chemo or radiation yet and he's so tired and weak because of the draining....

Have the first doc done the stent wrong so it's not working? I hope my dad is not mistreated. Very very frustrated.....Anyone has any idea when internal stent doesn't work, how to fix it? Any way to drain outside but no need to take the not working stent out? Thanks!!

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(82 replies, posted in Introductions!)

Doctor said he had antibiotic so no need to do blood culture. I heard they may do one anyway in the morning. Not 100% sure. Is it because he's not in cancer center so doc is not familiar? He chill again. With heated blanket, he is ok after a while. Is there different antibiotic for different infection? If same antibiotic, chill  be treated the same way regardless where the infection then the blood culture may not be important?

Nurse said he has a great night. Blood pressure went up. Chill/shaking they didn't think its a big deal.

I am so tired. Got home found my 3 yr old sick again. His dad took him to er. Seems stomach virus. So frustrated.

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(82 replies, posted in Introductions!)

Doctor is not here. Told the nurse about checking blood culture. She said will tell doc and see if it's necessary. It's getting late that I am so tired. Thinking to go home. It's so frustrated that I need to ask doc if they should try this or try that...

Dear Lainy, you can try medical as new career. big_smile Many members here seems very knowledgeable too. Thanks a lot!

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(82 replies, posted in Introductions!)

Dear Lainy, you know more then the nurses and residence doctors here. My dad is having infection. Right before drain the bile he had a fever. After drainage, his temp lower, but blood pressure very low, 80's/40's. They see fever + low blood pressure, said he has bad infection. Put him in ICU!!

after he's in ICU, they gave him a lot of fluid from IV, and some medicine. It seems the blood pressure is much better. He's very tired and sleepy. They said he had fever 100.4 F but when I tough his head, he doesn't seem to have fever at all. I think it's getting better.

The drain bag is working. He's happy with it. I hope he can get much better asap so that we can start seeing Sloan doctors.

You are so right! I need to be on the driver side. I am sure that surgeon lost interested in us after the CT. I couldn't believe doctors are like business men, if there is no deal, his door is closed. I need to take more control of it from now on. Thanks!

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(82 replies, posted in Introductions!)

My dad is in the room having the bile drain. The doctor who does the procedure told me he just got the call a few hours ago for this procedure! So the past 2 days nobody helped us scheduling anything! I am so mad. I should have pushed them harder. Cannot trust them at all.

Also my dad was shaking big time 1 hour ago so weak today since morning. When he's in the room waiting for the procedure, he has a fever!!! Seems like the bile obstruction is very serious and some infection started. He wasn't given any antibiotic during the time in the hospital either.

The doctor who does the procedure said he can only do left side drainage. said if left side is good, will return a lot of liver function. And he said since bilirubin high, liver functions will be damaged, not sure how much can recover??? this sounds crazy too. I am waiting and see how it goes...

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(82 replies, posted in Introductions!)

They scheduled the drainage procedure this afternoon. but my dad didn't eat breakfast was planning to eat lunch. They said from now on no food and drink till the procedure's done!! I am so stupid. I should have asked before... i forgot. sad

He doesn't feel like eating and doesn't care much. But he's so weak, without meal, even weaker. I hope next time I can be more alert planning ahead. Cannot count on doctors... this could have been plan much better but nobody really cares except us.

Yes, people here are great!! I've learned a lot from all of you. Thank you very much!!

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(82 replies, posted in Introductions!)

Thanks a lot Lainy!!

I complained to everybody that comes into the room and ask what do I need. Finally nurse said the residence doc told her that they are planning/scheduling the draining bile outside the body. Not sure why last time surgeon said the back not the side... I'd think should be the side where the bile duct located, otherwise; how can it be possible to drain anything other then blood. Maybe when doctor said back... he meant drain into a bag? Maybe I hear it wrong. He doesn't mean it. It seems like radiologist will do it not surgeon doctor. I can see he totally lost interested in us. Therefore, I don't think he'll do the drainage procedure either.

I talked to the nurse if she can help schedule appointment with Dr. Stephen Schriebman, lulu's doc. nurse refused said has to be surgeon doc referred. I don't get to pick doc whoever I like, maybe in the hospital... ok. I understand here is not restaurant. I called Dr. Stephen Schriebman's office and his nurse said Monday if we are still in hospital, doc will swing by, if we are discharged, we'll go to his office. Finally making little progress.

Dr. Stephen Schriebman's 2 offices are very close to my home. Hopefully will work out good smile

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(82 replies, posted in Introductions!)

Lainy wrote:

Dear lovedad.How is dad feeling today? Do you think he can go home and make a trip to SK? How far is it for you? Honestly I would feel the same say you do, there is one more thing you can try. Go to the office of the Hospital Manager and lay it out on the line and  let them know his rare Cancer needs some correct answers and you feel you are being washed off! This one says this, that one says that and the other one doesn't know! They should never have accepted him as a patient if they cannot treat him.  Also, did you read the post today from LuLu? You might ask to see Dr. Schriebman, she used him!

I am glad that I am not the only one that feels frustrated about this set of doctors... the radiation doctor seems good. he's very promising... maybe overly optimistic because cc is a rare cancer that may not have a lot of doc has experience.

Dr Fong said he won't see us until dad's bilirubin is been taken care of. He must worried that we got so excited for the Sloan appointment and jump out of the hospital just go see him. He has appointment today or next next Monday. I don't think we can make it today. Still waiting for what's going on with the surgeon. I am afraid any step we choose is incorrect.... just so scared.

But the bilirubin is high. The drainage outside the body won't be too wrong to do isn't it? even 23 is high.

I am looking for the nurse to have them help schedule an appoint for lulu's onc. need someone has experience cc, not experience in general. Thanks!!