Re: need help for my dad

Hi LoveDad....So so sorry you had to find all of us here ....just wanted to weigh in on Morristown Memorial Hospital....I did have chemo there with Dr. Stephen Schriebman for CC recurrence...he works very closely with a Dr Fine from NY Presbyterian...he is very aggresive and knows much about CC....just hope that this can help a very little bit....Hang in there and keep on loving your Dad....
Nancy

27 (edited by lovedad09 Fri, 07 Dec 2012 08:19:31)

Re: need help for my dad

We spent another day in hospital did nothing. Many doc came but the surgeon doc didn't come. His residence doc came and said per the CT, the tumor is very close to hepatic artery that the surgeon thinks too dangerous to do surgery. I asked recommendation, residence doc doesn't seem to have idea. said need to talk to family--us with doc. I said so where is the doc that never shows up??? I am not happy about the response at all. We still don't have much detail on what's going on. I got the CT report, and CT in CD. Will take to Sloan once my dad is discharge.

Today they said will talk to the surgeon and discover next step. oh yeah, that's the same answer I heard 2 days ago. We are here for 2 days nothing happened.

The big question I have is they put him in hospital because bilirubin is high. 3 blood tests, 15, 30, and when we were in the hospital the 1st day, it's 23. So from 30 to 23, dropped. I wounder if the stent wasn't working but now works a little? If we still need to drain bile outside of the body. I am mad that the surgeon said we need to take care of the high bilirubin; it's so high and dangerous.... ok, so we are in the hospital 3 days, this has not been taken care of or even talked about. I don't see they believe this is urgent any more?? I have a strange feeling... maybe the surgeon wants to know if my dad is operable, but found he can't do it, so he lost interested in us.

one oncologist came yesterday. said if we like to go to Sloan, it's great idea. he doesn't see confident about any helpful chemo suggestions. Said in general, it's Gem... and the 5FU? The 2 medicine I see often in this board. he said could help extend a few months live. very depressing. I asked if he can give us different treatment options to compare pros/cons/side effects.... like a menu that we can consider in restaurant? Maybe I asked too much, he said no. just Gem something and the 5FU...the standard ones. I am not comfortable with his answers that doesn't seem to work with my dad per his situation.

The radiation doctor also came yesterday. Dr. James Wong, chairman of radiation. He seems very optimistic and said the tumor is small. He has treated a lot of patients and many of them well under control, sounds very confident and promising. He said if we like to start, can do 5 days 15 min each day for while/maybe a month I forgot. I ask side effect... he said if my dad can't stand it, maybe start 2 weeks, wait 1 week. something like that. And he said his department is very high ranking, aim very well on the tumor.... Dad felt very comfortable and hopeful after heard from Dr. Wong. I hope it is so "easily" under control. I heard radiation accumulates. Some people start well, and later very weak. Not sure my dad already very weak.... can he afford to do that. But leave untreated is no good either. so tough.

Dr. Fong won't see us until my dad been discharged from current hospital. It's so waste of time staying here. I feel lost again about the next step.

Re: need help for my dad

lulu07 wrote:

Hi LoveDad....So so sorry you had to find all of us here ....just wanted to weigh in on Morristown Memorial Hospital....I did have chemo there with Dr. Stephen Schriebman for CC recurrence...he works very closely with a Dr Fine from NY Presbyterian...he is very aggresive and knows much about CC....just hope that this can help a very little bit....Hang in there and keep on loving your Dad....
Nancy

Thanks a lot! I'll try Dr. Schriebman. The Onc yesterday they sent told me no information but support my idea go to Sloan for help. maybe we are too hard to treat they gave up on us. CRAZY!

Re: need help for my dad

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

lulu07 wrote:

Hi LoveDad....So so sorry you had to find all of us here ....just wanted to weigh in on Morristown Memorial Hospital....I did have chemo there with Dr. Stephen Schriebman for CC recurrence...he works very closely with a Dr Fine from NY Presbyterian...he is very aggresive and knows much about CC....just hope that this can help a very little bit....Hang in there and keep on loving your Dad....
Nancy

In general how to did you find Onc that specializes in cc? I feel like all doc we met so far are doc "in general" sad

31 (edited by lovedad09 Fri, 07 Dec 2012 09:47:12)

Re: need help for my dad

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!!

Re: need help for my dad

Hey, little Grasshopper you are learning very quickly. High Bilierubin is caused because the bile has no where to go, it is blocked, so stenting needs to be done, the sooner the better. I am just curious why the external stent is being put in through the back and not the side? Just a side note...you don't have to copy over in to your post what we post as there is a button at the bottom of each post that you click on and it says Post Reply and will take you to a message window. Will save you time.
Makes sense that Dr. Fong won't see Dad until he is stented. I hope he gets the stents today! He will start to feel better so he can make that trip.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

33 (edited by lovedad09 Fri, 07 Dec 2012 09:52:17)

Re: need help for my dad

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

Re: need help for my dad

Excellent! The radiologist usually does the procedure. They will give Dad a little twilight sleep and then the tube is inserted with the guidance of some kind of Xray machine, OMG, can't think of what it is called. Great on Dr. Schriebman! Our members are terriffic, yes? Now I am getting happy too! Please let us know how the procedure goes.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

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!!

Re: need help for my dad

His not eating right now is not that important they will give him something lite after the procedure. Just having a lot of that bile come out, he will feel so much better and eventually feel more like eating. My guess is be will get something like a turkey sandwich and some juice! Anxious for the results. You are not dumb you have a ton of stuff on your mind!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

Hi lovedad,
First of all, I don't like you calling yourself stupid. You have so much on your mind and are so stressed. Please cut yourself some slack. Secondly, it makes me sad that you feel you cannot count on the doctors. That would be a sign for me to find someone else. There are cancer centers that have very caring doctors and nurses. I say this because my daughter has had nothing but the best care with very compassionate doctors and nurses. It really bothers me that you feel they don't care. Hopefully, Dr. Shriebman will change your thoughts about doctors. I hope everything goes well. My thoughts are with you.
Love and hugs, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: need help for my dad

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...

Re: need help for my dad

You have a lot of patience, too much, wish I could be like that. I would have made a list from beginning to now and taken it to the Hospital Manager. But now I would wait until dad is ready to leave. These infections can take a few days and the infection coming on could be what gave Dad the chills.Teddy used to get the chills (RIGORS) so bad I would put 3 blankets/quilts on him and crawl on top. Along with  the chills a high temperature is not unusual. Then straight to the ER.  He should be put right on anitbiotics and make sure a blood culture is taken. If he gets the chills again ask for a couple of heated blankets.Remember now that you are the boss and they all work for you.
Don't get heated with them but do it nicely as Dad still has to be there. See if he can get some hot soup for dinner and maybe a turkey sandwich. Teddy always was able to eat right after the stents. And most important is to see to it that antibiotics get started today. Teddy would get Levaquin through the IV! Let me know. You are doing good, better than you know, hang in, be strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

40 (edited by lovedad09 Fri, 07 Dec 2012 19:39:29)

Re: need help for my dad

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!

Re: need help for my dad

Please ask what Meds they gave him and ask if they did a blood culture as you want to know what kind of infection it is. Teddy's was ecoli and it was between his aborted Whipple and the real deal. When the ambulance got him to the hospital his Blood Pressure was 55 over 40 with in an hour of the IV with MEds he was already better. Thank you so much for such a high compliment but I am not a Medical person, I listen to my gut feelings, they will almost never steer you wrong. It is a good thing to put him in ICU as over a weekend the Hospital is usually not as highly staffed and this way he will be watched more closely.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

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!

Re: need help for my dad

The reason to know what kind of infection it is and what they gave Dad is so that if at any time it should happen again you can tell them what he had and what the Meds were. Go sleep wonderful little daughter, you did enough today and you need your rest.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

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.

Re: need help for my dad

YES, there is a need for the blood culture so that if it happens again they will know immediately what to give him, as there are different antibiotics that all work differently.Teddy was given LEVEQUIN and it worked immediately to stop the chills and fever, nothing else did. You have a right to know what they are using and doing!
Who is this Doctor and it sounds like he talks to you like a child.  When Teddy got these infections he started out in ER and they confered with his Oncologist. An other important reason to have an Oncologist. I sure hope things are better today and I hope your little one is feeling better.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

46 (edited by lovedad09 Sun, 09 Dec 2012 08:56:46)

Re: need help for my dad

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!!

Re: need help for my dad

I just am at a loss for you! Teddy always got something light to eat after stenting. In fact we would stop on the way home and eat at a restaurant. Did you get hold of that Dr.Shreibman? I would think if the stent is not metal they could remove the internal stent and then put the external stent on the right  side. Teddy never had metal stents and his were changed often so why could this internal stent not be taken out? Now here you are getting different answers. I am sorry to be negative but I am very concerned. I would still make a list of all that has happened, take it to the Hospital Manager and tell him/her that you want your father moved to a Hospital of your choice and that they should pay for that move. Above all make sure they understand that you are dealing with a rare Cancer and have had no straight anwers yet. If you decide to do this keep a copy of your list for yourself. This just does not sound right to me at all.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

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

Re: need help for my dad

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.

Re: need help for my dad

Good luck today and I am hoping Dad starts turning around. Is there another Hospital you can go to if they take hiim by ambulance.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.