WOW>>This board is so incredible..THANK YOU ! THANK YOU! THANK YOU!
I am marching in that hospital today with these posts in hand and I am going to read them to my husband.... WE are going to have a plan!....THank you everyone for all your information ....
WE should have the 2nd opinion early next week..and will keep everyone posted!! and probably a 3rd after that!!!!!! (Dr. KATO)
Thank you so much!!
Very Sincerely,
The Austin Family

Hello and I wanted to thank everyone for their responses..You are all so amazing..
WEll...so far My husband has been in the hospital..he rehydrated and yes that helped..The chemo was stopped after 1 session....He got sick and dehydrated and into the hospital he went as he vomited the morning of the 2nd chemo session. So here we are again..His spirits are pretty crappy, he is so defeated.he eats very little, and I mean very little.maybe orange sherbert.He will not touch any solid food..Said he is not interested. NOW, GET this... our local oncologist's associate told him that food will only feed the cancer..WELL of everything that was said..THAT Stuck in his head.....Truthfully I am so angry...what purpose did THAT serve? IDIOT!
Since speaking to that oncologists associate he has become so defeated..I am so ANGRY at that DR..I could kick him..It is just wrong! Wrong! Wrong!! I say shame on him!
We have a 2nd opinion from Dr Veach next week from MSK...and that will say very much..IT will most likely be a phone consult as there has been no new info since the first chemo...we are just in a holding pattern..we are trying to convince him to fight..not sure what he is thinking. but I do know he is terrified. Depending on what  Dr Veach says we will proceed from there, either within MSK or consult DR Kato.or refer us to someone else...within MSK
Our PT scan was not good..metastisized Stage 4...so ....we wait, we hope and we pray........

Hello,
I do not know what the specific numbers were for the Billirubin...but something has shifted..He feels better that he certainly was..Maybe because he is now hydrated..He just seems sooooooo much better...He has had 2 good days...has been eating pudding, Jello, Boost and sherbert..for now..
BUt "something" has shifted..Dr said the bad numbers are going down and the good numbers are going up...oh ..ok...we are waiting for the second opinion and maybe Dr Kato will get a shot too.....But we are liking whatever this small change is......please continue...and...to be continued......
THanks for all your help and support!
It is greatly appreciated!
The Austin Family

Well, We never had the 2nd week of chemo. My husband got very sick when he got to the Onc and vomited and off to the ER he went, and was admitted. He was severely dehydrated and bilirubin was high......so here we sit .W a I T I N G....
WE have decided to seek a second opinion from a Dr Veach at Memorial Sloane Kettering in Nyc... Does anyone know about him?My husband is too sick to go to NYC..so we have faxed all the info and will see what is said. They call this a mail consult, and as good as our insurance is, it is not covered..That, we cannot understand..What would be the difference???
Will keep you posted....Any responses would be greatly appreciated...
Thank you!
The Austin Family

We did not ask..And NOT doing Chemo was never mentioned.It was decided to give it a shot as long as my husband was strong enough and could handle it. They do the blood work  right there and he was strong enough for the second cisplatin Chemo tomorrow...so on we go...
I asked the ONC nurse and she said they never give a timeline..because everyone is different and one never knows..and you know what , we all agreed!
Thanks again for all your words and thoughts...
Sincerely,
The Austin Family

Thank you for your Post! WE will certainly read that! This was our first Pet Scan...and we are learning. THe oncologist nurse explained to us that this is a definite waiting period...and that is what we are doing......THank you so much for all the info that you provide for us..
Very much appreciated,
Sincerely,
The Austin Family

Hello..My Husband is 58.
..We started Chemo after Christmas..Dec 27th..Gems and Cisplatin...WE go tommr for another round of Cisplatin..He got the hiccups on the 2nd day after chemo and that started the vomiting..but not too badly..He sleeps all day and barely eats at all....but drinks water to take his meds..which are for the pain..Perhaps he has had a BOOST liquid drink, a few mouthfuls of broth and a few sips of a milkshake..He is not interested in eating..He just goes back to sleep..
The Chemo nurse handed us the results of the PET scan as we sat waiting..
I wish I could understand the scale of the SUV's in ranges like 6.5,4.5,1.2-1.7...TRuthfully we would love to get another opinion and of course hoping chemo will halt, albeit,temporarily some metatasis..and of course, hope, prayer and miracles....never say never...BELIEVE!.....But Here is the news!
This is a brief summary:
Periportal adenopathy SUV.6.5
Periperiphal peripancreatic Lymph nodes SUV 4.5
para aortic lymph nodes near left renal hilum measure 11mm short axis SUV5.2
Innumerable bilateral hilar and mediastinal lymph nodes SUV as high as 5 with anatomic size in the 8-12mmshort range axis
2 left upper lobe pulmonary groundglass nodules 9mm with SUV1.2-1.7
Left cervical level 4 lymph node has SUV4.2
Numerous Osseous lesions, including mid-sternum,multiple spinal sites(including bilateral T5 pedicles) left more than right ribs,and scattered about the pelvis with SUV3.7-4.2  (no specific risk for pathologic fracture)
IMPRESSION: Findings Are compatible with widespread lymphatic parenchymal and osseous metatastic disease!

If anyone has any insight or any suggestions or anything..Our Family is all ears!..So let us know any thoughts or any anything!!!
WE thanks EVERYONE is advance for all your prayers, hope, insight a!nd knowledge!
Very Sincerely,
The Austin Family

OH..and as an addendum to our previous post...is that Mr Austin (my husband) has the stents and they are working beautifully.He was jaundice..but has regained his color...so that is good.....I see so many people speak of the ERCP procedure..so we can check that, for now, off the list! Thank you ALL so very much..We spend hours on this website..learning, learning, learning!! It's amazing!!!!

Hello Everyone,
I wanted to thank you all for your quick responses.WE are amazed and thrilled to have found this website and all of you!!! Thank you all VERY much! My husband is resting, and is on Dilautin and morphine(pill) for pain. He has no energy, and barely eats and has a problem hiccuping..which we were told to give antacid for.It only helps slightly. In the past 3 months he has lost aprox 55lbs as they were trying to find the problem!
Our problem here seems to be TIME!!!!!! The oncologist says we can start treatment Christmas week or the first of the year. We need a pt scan as the baseline for treatment. we only know he is stage 4 and in the lymph node in his liver ( or near) it. The port will be put in Monday..BUT we have to wait a week or 2 for the PT scan.. to start the chemo..MORE WAITING..Did I misunderstand that we have time.????? I don't think so .WE are getting so frustrated because we wanna get going..The port is in Monday and now we have to wait for the PT scan to start????? The oncologist is making us wait..WE are trying to respect the oncologist and her office ( where they will administer the Chemo)..but we want to get going....She also said they are very busy...Truthfully we want to get to Dr Kato in Nyc..but are waiting!! Waiting, Waiting! Waiting,...we waited for Jefferson to release results of the biopsy to the oncologist and turns out it was just sitting on somebody's desk for weeks..so it will be 2 months soon....more metastisizing???..More waiting...more time........
I guess you can tell we are at our wits end......Please tell us your thoughts..
It's friday night...so we want to start making A DEFINITIVE PLAN and that includes getting or consulting with Dr kato...but I'm sure he'll need the pet scan as well.....Please let us now...Thank you all very much..The Austin Family and Friends..

We are in total shock!~ WE just got back from the oncologist and were informed my husband has Stage 4 Cholangioma Carcinoma. WE live in Pennsylvania, with easy access to NYC, NJ, Phila and JOhn Hopkins..so all hospitals are within driving distance. WE are starting chemo MOnday with Cisplatin/Gemsitabine.....WE saw a local oncologist and she told us..there really is no cure and  that this is all just basically palliative care.
He had so many tests for months and finally thru Jefferson they inserted a camera and this is the diagnosis. There was not a giant tumor, this originally looked like scar tissue and was difficult to diagnose..so we waited 4 months to get this final diagnosis...but it is in the binary ducts.
If anyone can point us in any direction as where to go for a second opinion, please post! We are learning as much as we can. but are hearts are broken and our heads are spinning....He needs to get a pt scan to see if other lymph nodes are affected..Please share your thoughts!!
thank you......The Austin Family and friends