MY DADDIE :( == hilar cholangiocarinoma
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My biggest concern is the blockage in the Y branch. How many time did the radiologist try to place the stent in? It took them 3 times to finally to get a stent thru my blockage at the Y branch.
Hang in there,
Jasonhuong-my….at this point, nothing should hold you back from exploring both options and then making a final decision when all information is given to you. When is your Dad to start radiation and chemotherapy treatment?
Hugs,
MarionMy Daddi–>
Please give me some advice on this decision. I just talked to Dr.Chapman office and talked to nurse Velva specifically about my dads condition, she asked to send all his file and scan to the office. I would love to do so but before, I need to clarify something. Is my dad absolutely inoperable???. If he is, then the liver transplant would be the option to go, but what if the doctor will do the resection after CT/radiation? THen which is better, the resection or the liver transplant. Since i’m so new to this– I’m not sure what to do in this decision. I do know one thing that the protocol for liver transplant is when patient is absolutely inoperable and should I just send my dads data in for Dr.Chappman to review and he will then determine from there? Dr. Chung which told me my dad tumor site is at the Y-site which is hard to resect, said that he want my dad to do Chemo and radiation and would review if my dad is operable or not later on. Should I wait for this, letting my dad go through this CT decision or should I just go straight to Liver transplant.?.. What if the size will go down and be resectable later, then is it a wrong idea to have the liver transplant be in process??>.. this is my biggest concern. Please respondhuong-my, I am so sorry to read your latest report. First may I address the external tube. My Teddy had one and it really was more comfortable if you can hold it up a little by pinning it to a shirt under his clothes. Also it does pull a little on the skin and we found a cream at the Pharmacy to help with the irritation. I forgot the name but your Pharmacist can help you with that. It must be cleaned around the site daily then apply the cream. After a while Teddy was comfortable enough to golf with the tube. I would tell the ONC about the pain with the tube, maybe something slipped and it needs to be looked at.
As to what to do now, if you are unsure I do feel a 2nd opinion is in order. Not only will you feel more secure but you will never look back and question it. One more suggestion, when you visit the Doctors always have a list of questions ready to ask and then you won’t forget anything. Wishing you the best on handling all this. Be Strong.HI Stan and everyone in the forumn. Update one DADDIE..
** We just met with DR. CHUNG and unforntunately Dr. Chung said my dad has to be on Chemotherapy, the operation “resection” would not go as plan b/c it seems the tumor is in the ‘branch”… HE hope the CT will decrease the size to a resectable size…. … I don’t know what else to say, other than I dotn’ know what to do now… .. I coulnt’ ask any more question and would like to know how positive is this and should I get a 2nd specialist to determine the tumor site. I would like your advice on thiS? …. My dad sseem to be very weak for C-T , he had lost 10lbs and I can say can’t walk right due to the tiredness adn the pain from The “EXTERNAL” tube that they placed in him to drain the bile since the “stent” doesn’t work… —I’m really frustrate right now… should I entirely trust on soley Dr. Chung…?? Is he workign with a group of specialist to decide on this??? and what is my best option after this?? Should I gather the data and pix and sent it somewhere else to confirm the resection descision prior my dad starting on chemo???…. –> We have a meeting with the “radiology dr” this afternoon to talk about my dad C-T plan and see if he is able to get the C-T… …
If a second option is best, which is a great place that have team of expert on this and the resection, I really want him to be resect b/c the external drain seem to give him so much pain… Please help
As many have already said, I would call your father’s doctor and describe what is going on. He may very well send you to the ER or hospital for more testing.
That gives the doctors the best chance to do what needs to be done to keep the May 14 surgery date.
I am glad that you were impressed with dr Chung; I have had 8 surgeries and he is the best surgeon I have been involved with. I will be praying for your father and your family on the 14th.huong-my, It will all be up to the Doctor when he sees him. If Dad gets worse in the meantime, again it is up to the Doctor. Your Dad is suffering, the headaches could be from not eating. If he is loosing a pound a day that is not good as you are starving to death. Like I said I know. It took weeks to build me up enough to go home and it has taken 2 months to get back to normal, and I still get very weak. I am pretty sure they will not do surgery in that condition. They even had me on the cardiac floor as the first week they were afraid I would have cardiac arrest. I could not hold down even water and when I would start to talk I would get dry heaves. I am not a Doctor but having just gone through this I would guess in his present condition they would not do surgery but if he was in the hospital he at least would have a chance. Keep this in mind, when you get sick like this your mind is not clear and he will not be making the best decisions for himself. You become disoriented, and you feel your brain is not working. Like I said, I was just in that position and it is not good. Be strong! P.S. My daughter pushed me the whole way and I would never have made it without her making the decisions, it gets that bad.
Hi everyone== Thanks again for the response and support. I”m glad I join this forum that have such rich experience and knowledge regarding to this.
My dad’s concern for is that if he were to be admitted to the hospital after the ER visit, would that affect his surgery date. which is on the 5/14. In addition his pre-operative clearance date is this following tuesday. The pre-operative clearane is when his primary doctor will look at his overall health with lab values and etc to determine if he is healthy enough for surgery. If this also got push back then it might affect his surgery date.
huong-my, I have not heard of the headaches, but in my humble opinion, I would take him to ER. If he is not eating it IS very possible to loose 1 LB a day, It just happened to me with another Illness. It took 2 weeks of IV in the hospital to build me up enough to go home. He has to be as well as he can be for the surgery. PLEASE do NOT give him any Medication of any kind without first asking his Doctor as you could do damage. I know this is so hard especially when we reach a point where we have to tell our parents “THIS is how it is going to be”. You have to give him lovingly, some tough love. I would take him to ER today or call his Doctor today! Be strong.
Hello Huong-My,
Sorry to be so late in posting a note to you , but I wanted to welcome you to the board (I am sorry you have a reason to be here) and tell you that we are all here to support you (as you can already tell I am sure). I am a 3.5 year survivor of extrahepatic CC, so there is hope and you should always hold on to hope.
From the sound of your last post, I would suggest going to the emergency room. The symptoms you are describing don’t sound familiar to me in regard to this cancer and may be a sign of something else (perhaps vascular?). it is important for your dad to stay healthy so that he can fight this disease and you should tell him that going to the ED is not a sign of weakness, but of taking control and getting things taken care of.
Please either go to the ED or call the doctor about his headaches and throbbing.
Sending good thoughts your way….Hugs.
-Randi-Stan- and everyone that reply :: thanks so much for everyones comment and suggestion…. Here is my update…
=== My dad seem to be resectable, the nurse call to let me know to call dad’s primary doctor for a “pre-operative” clearance and it will be this coming tuesday. She also said to wait for a phone call – the dr will placed a tube from outside into his liver to drain the bile and said that this will direct him for surgery. The set date is 05/14… Dr. Chung– seem to be very knowledgable, and after reading Stan’s comment, I thank you for giving me some thoughts into this. and I agree– he seem to be very clear and firm in his stands and ability. He explained everythign very clearly and I think i will give him a try, My dad’s condition , fatigue, headache and N/V is getting worse with losing weights, I think I couldnt’ afford to switch him around at this time. I will gather his info in need after the surgery though. …. Dr. Chung suggest that my dad has to stay healthy, eat and not to lose weight and be ready for surgery. However, THIS IS MY CONCERN AS OF RIGHT NOW>>>
DADDIs condition scared me this past few days after Wedns talkign to Dr. Chung…. today is Sunday — My dads keep complaining of headache, severe headache, and he felt his body so uncomfortable and fatigue tired… I can see the veins showing on top of his forehead – moving adn beating, in touching it i can feel the heart beat from the vein… I took him to the near by pharmacy to test his BP but it was normal….. IS THIS A NORMAL SYMPTOMS ? and HOW TO HELP HIM??.. He is right now can’t sleep and just sit and couldnt’ sleep sayign his body doesnt’ feel right… ?. He is scared to go to the Emergency again, and I couldn’t convince him too — He lost 4 lbs already in 4 days. and that is not good.. IS THERE ANY WAY TO RELIEVE HIS SYMPTOMS? I Tried to give him ice packs for his Headache, but not help much and I dotn’ know wat to do for his body symptoms.. uncomfortable that he said he cant’ explain.. He look so pale.. it is so heart breaking lookign at him.. I Wanted to give him some sleeping pills so he cna just sleep and forget the body symptoms.. but he is scared of the med also…?? Can you guide me..?..JASOn– please tell me more of DR. CHUNG… thanks everyone so much once again.
Aw, Holly, you are too kind. Honestly I just get so much more than I am giving as I am totally addicted to this Family. Think about it, no one argues, no one goes in to a jealous rage, everyone is kind and only uses the nicest of words. I often say if the World took an example from this Board what a great and kind World this would be.
And, oh yes, no one takes my clothes!Percy and Lainy I love you both so much. Just wanted you to know! You brighten my day every time I come here. So do so many of the rest of you – Marion and Randi and Lisa and …. we are all so blessed with this family!
I live in Grand Rapids and just had half of my liver removed by dr. Chung. I found him to be a fantastic surgeon who took the time to explain as well as listen to my questions. I recovered very nicely from the surgery and am currently doing chemo. My wife is a doctor, not a surgeon, and tells me we are fortunate to have dr Chung in Grand Rapids. I would use him again in a heartbeat.
Huong-my,
Sorry that you had to find us. I am glad Pamela chimed in. I was going to send you her way so you could hear her daughters story.
My story in a few sentences is: I, too, thought this was a death sentence. I was healthy and 47 when diagnosed February-march of 2011 (tests and scans, etc took 2 months). I immediately sought another opinion at Sloan Kettering, which is about 3 hours away. I am not operable either, but in 24 months, have been in the hospital less than 1 month total. I am otherwise still healthy, and no longer consider this to be a death sentence. I consider it more of a life sentence because I know how precious each day is and most people don’t get this chance.
After 2 years with Sloan Kettering, I recently changed to Fox Chase and have entered a clinical trial that seems very hopeful.
I know it’s a lot to handle, but stay positive and find the best doctor for your father. One he trusts is very important.
Prayers go out to you and your dad.
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