Topic: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi All,

I guess I am here the same as everyone else, for support. My Dad, My Hero, was just diagnosed with Advanced CholangioCarcinoma. He also has a large mass in his Stomach as well as Liver and Lymph Node Involement.

Currently in the past month he has lost 25 pounds, has no appetite, vomits all the time, and is in pain in his abdomen and back. He is scheduled to undergo an endoscopic procedure this coming Wednesday to confirm the severity of the disease. They are also hoping to place a stent in the bile duct to relieve some of the pressure.

Any comment or suggestions would be appreciated.

Thanks Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Lisa Ann,   So sorry to hear about your Dad.  I'll cut to eh chase and say it sounds as though your Dad is not doing so well.  However, if they can place a stent and get his bile flowing half way normal he will feel better.  I wish I could give you some words of advise but until they fully know the extent of your Dad's condition it's really hard.  Stay positive as possible, plenty of love and support goes without saying.  I am not as old as your dad and have CC in liver, both lungs, ribs, and tailbone.  I'm still looking for a cure or some type of miracle from above.  I would say my CC was found fairly early and have been battling for 8.6 years.  Have hope and pray that they can do something for him.  They may ask if you want to try Chemo.  At your Dad's age I would think twice about that. Weigh all your options before deciding wich way to go.  Take time to read some of the Family Blogs on this site and it will give you a general idea of what you can expect.  Just click on wiki above and when that page comes up look down bottom right and click on family blogs.  I really think this will enlighten you of what many have and are doing to fight this disease.  God Bless You and Your Dad and I hope they are able to give him some relief soon.
JeffG.

Take it to the Limit,One More Time! (Eagles)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hello Lisa,
welcome to the site!
How old is your Dad?
I lost my Mum earlier this year to CC. She was 68 when she died.
I'm really sorry to hear about your Dad. I echo Jeff, no point in beating about the bush, it doesn't sound too promising. I really feel for you. It is so frightening to be the receiver of such bad news. I remember feeling scared beyond belief when my Mum was diagnosed.
However, each case is different, and I agree with Jeff, being positive and supportive is what matters. And make the most of your Dad!! I'm sure I am not alone in wishing I had done this/that/the other, while Mum was still here. When you have recovered from the shock of diagnosis, move forward, and make the most of ANY time you have with your Dad, and love him, and be there for him!
I don't have any words of wisdom to offer apart from what I have said!
Just sorry that you and your family have to go through this. Much love to you all,

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

oh Lisa, so so sorry about your dad.  i suggest that you talk to his doctors to try to get his horrible symptoms under control.  pain and vomiting can be treated and often treated successfully.  if his vomit is dark, he may have a bowel blockage.   

i am currently taking oxycontin for pain and zofran for nausea.   fortunately for me, i rarely vomit.  there are other medications to try if the first ones your dad is treated with don't work.  as it's been said here many times, our bodies react differently to medications and treatments.

wishing your dad relief and sending you good thoughts as you begin this journey.

xoxo, barb

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Thank You all for you words of truth and encouragement. I am very fortunate that my Parents live with us, so I can spend all the time I want with him.
At this point, I am trying to accept the diagnosis, and trying to prepare and become stronger for him and my Mom. I cannot imagine my life without him, and feel helpless when it comes to comforting my Mother. They have a very special love that only comes once in a life time, so I do not know how she will cope. Sometimes it is as if, she comforts me more, because she talks to him and knows what his wishes are and what he is feeling. My Dad is not a talking man, and has a morbid sense of humor most of the time.
He says he accepts the diagnosis, and he is not afraid of what is ahead of him. I wish I could be that strong. I love him dearly and will do whatever it takes.
As for the Chemo, I do not beleive he would agree to that, and were told that it would not make a difference anyways. My focus would be on trying to relieve the pain and discomfort, to let him enjoy all the time he has left.
I will keep everyone posted on the outcome of the Endoscopic procedure, and I only hope that they can offer him some relief.

God Bless All and Keep up the Fight.

Love Lisa

6 (edited by tedpatty Mon, 03 Sep 2007 08:14:10)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Dear Lisa,
There is one thing for sure, you are among friends here.  Friends that understand and care about what you are going through right now.  My dear wife, Patty, was diagnosed in Febuary and we have been living "one day at a time". She is 61 years old.  For the first three months, she experienced much of the same things that your dad is going through right now......  unsucessful surgery, nausea, loss of weight.  I thought, several times, that I was going to lose her during that first three months.  I am happy to tell you that there is still hope that your dad will have some good quality time if he can get the symptoms under control.  Patty had the stents placed in march and she began a gradual but steady improvement in her overall health.  She decided right from the beginning that she would not have any chemo or radiation.  She wanted quality of life rather than quantity of life. I have been behind her completely in her decision.  For the last four months her overall labwork has been excellent, except for her CA19-9 which has been steadily climbing.  She is on IP-6 and AHCC plus other supplements and lots of carrot juice.  We have been enjoying doing regular activities such as eating out and going to church regularly.  She has not been to a doctor since March as we would just rather "take it as it comes". 
I tell you all of this just to let you know that it is possible that your dad could have some good time ahead.  Enjoy each moment with him and thank God for those moments.  Patty and I put our complete trust in God and know that he is in control.  We know where our eternal life will be together. 
Take hope LIse and our prayers are with you.

Ted and Patty

7 (edited by Lisa Ann Mon, 03 Sep 2007 21:47:03)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Ted and Patty,
Thank you for your words of encouragement. I am very hopeful that we can make him comfortable and pain free, so that he does have quality of life. The hardest thing for me right now is to think I will have to watch him suffer. I am praying that he will have more time with us then the Doctor's are stating. 3-6 months is scary,and isn't enough time.
I am glad to hear that Patty is enjoying life to its fullest with you and family. Thats all I want right now. Dad sleeps alot of  the day away, and isn't doing anything that he enjoys or would do on a daily basis. He just doesn't feel well enough, The hardest thing is to try and get him to eat, but he ate more in the last two days, then he has in weeks.

I will keep you posted. smile

My Thoughts are With you and Patty,
Lisa

8 (edited by Lisa Ann Thu, 13 Sep 2007 10:57:22)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Dad went to see the Gastroenterologist and he  says that the Radiologist may very well be correct in his Diagnosis, however he will not commit until he does the Endoscopy and a Biopsy. He states it could still be Esophogeal Cancer, Stomach Cancer, or Colon Cancer that has spread to the Liver. None of which is good either.
Mom took him this morning for bloodwork, specifiacally a CA-19, and his Endoscopy is scheduled for next Friday.
Dad is in alot of pain today, and just sleeping the days away. He has no ambition to do anything. I cannot beleive that this is not Cholangiocarcinoma based on the symptoms. He does not have symptoms related to the other cancers he mentioned, except for the mass in his stomach. They have not prescibed anything for Pain or to try and treat the symptoms he is having, and I am very upset. Mom called the family physician this morning to see if he would call a script into the pharmacy. He is suffering for no good reason. Seems like it is inhumane to make him wait another week to see what the outcome of the endoscopy is to prescribe something.

So to say the least, I am very frustrated. I will keep everyone posted.

Thanks for listening, Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Lisa Ann- I lost my Dad to this illness in January of this year. He was 69 and in pretty good health.  His illness was diagnosed at Stage 4 and was quite aggressive- only having been diagnosed when he experienced pain in his hip. No one could believe he was as sick as he was when diagnosed- he didn't look sick nor did he really complain much. They discovered he had extensive bone metastasis and 4 weeks later found the primary to be CC.  He too had lost about 25 pounds and was constantly vomitting, having no appetite and difficulty sleeping. 

His doctor prescribed pain meds immediately. He began on Tylenol 3, then went directly to Dilaudid upon diagnosis.  I too was frustrated at the length of time between appointments. 

Looking back, one thing I'd do differently was actually take my Dad to the Emergency ward. At the beginning we waited for his appointments.  For him, it would not have changed the outcome because his illness was very advanced when discovered. However, had I taken him to Emergency before waiting for the appointment, he would have had the proper treatment for his pain sooner. They have oncologists on call at hospitals and they will prescribe a pain medication for him. 

This is something you can take control of now... he doesn't have to suffer needlessly. If you get resistance, ask to speak with an advocate. In this day and age, there is no reason that an individual needs to be in pain. 

We lost my Dad within 10 weeks of diagnosis and it was the most difficult time in my life.  My comfort lies in the fact that my mother and I were his constant support and we were there for him until the very end. Regardless of what happens, your dad needs to feel your support and love.   

I wish you peace and strength.  My prayers go out to you and your family that your dear dad is well taken care of.

Bright Blessings,

Missing U

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Lisa.  My first post as well.  My Dad, 82, had been diagnosed in Aug. with cc, but now we've learned its inoperable and spread throughout the liver.  Already been thru the stent procedure and now plan to meet with oncologist to assess treatment options excluding surgery.  A bit of a blow to an otherwise strong and optomistic soul...and crushing to his family.  Good luck and keep the faith!

J

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Jay,
So sorry to hear about your Dad as well. Can you tell me how the stent procedure worked and did it offer your Dad any relief? My Dad just seems as though he is giving up on life and for the most part sleeping his days away. My Dad's too is inoperable and we won't really know how involved everything is until this coming Friday when they do the Endoscopy. I will keep you and your Dad in my thoughts, and please keep me posted. The scariest thing is not knowing what I should be expecting to happen, and how fast it is going to happen.

Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Lisa,

Dad's stent has been replaced a couple of times.  Def. helped with biliruben issues and other than recurring infection which may or may not be related to stent he feels reasonably good.  Opting for strong course of chemo but must wait for antibiotic regimen to be done.  Will have to wait to see.  From what we know after endoscopy its cc, with liver stomach and gall bladder involvement.  Dad would like to know the world record for living with the disease...something to shoot for. Will keep you posted.  Good luck to you!

J

13 (edited by Lisa Ann Tue, 11 Sep 2007 16:46:54)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Jay,

Thanks for getting back to me with the Information on the stent placement. Sounds like your Dad is a fighter. I am not so sure about my Dad. I think right now he is angry and just giving up. Of course the Doctor's are not giving us much hope either. They say that Chemo will not make a difference, and will just make the time we have with him miserable because he will be sicker than he is now. I do not know what to think. My Dad will not choose Chemo anyhow, so that is kinda out of the question. He watched his first wife die of cancer (breast cancer) when she was only 42. My little Sister also passed away after a long battle with Ewing's Sarcoma(a rare, very agressive bone cancer), when she was only 26. So needless to say, he certianly doesnt think there is a fighting chance.
Our priority is to keep him as pain free as possible, and to enjoy all the time we have together with him. I had a good night with him tonight, he actually ate a little dinner(not enough to feed a chicken) with us tonight, and we talked out on the deck for a little while. If I forgot to mention, I am lucky that my Parents live with us, so he is always here, and I can grab every bit of time I can with him and my Mom.
He started taking Hydrocodone for pain relief, and he seems a little more like Dad.

I will keep you posted, and you do the same.
You and your Dad are in my thoughts and prayers. Keep the Hope.

Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Missing U,

I want to thank you for your advice and support. So sorry that you lost your Dad, I know how hard that must be. I find myself trying to prepare myself for what lies ahead for him and us as well. We too are supporting him, and are always here for him. As of the other day, they did prescribe Hydrocodone, and he claims it is taking the edge off the pain a little. It is a waiting game right now until Friday when he has the Endoscopic Procedure done, and we get a more definite diagnosis. As I have said in another replay to a post, the scariest thing is not knowing what to expect. How sick will he get, will he still have all his facilties to make decisions or tell us what he needs, etc.
I will keep you posted, as I am sure I will need someone to talk to in the weeks and months ahead.

Bright Blessings to you and yours,
Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Everyone!

I just want to say I know exactly what all you are going through. I lost my younger sister 9 months ago to this terrible disease. She was having some pain in her shoulder, but other than that, was always healthy. She worked in a nursing home, so we just assumed it was from too much lifting. The pain kept getting worse, and when she went in and had a CS and then a Pet Scan and found out it was cancer, we could not believe it! We took her to the Mayo clinic and then to a cancer center in MN. She fought as hard as she could, unfortunetely she had to be on so much pain medicine, it stopped her intestines from working, and she got a blockage, couldn't get food down anymore. She passed away six months after being diagnosed. I still wish we would have done so many things differently, but, I am happy for the time we had, and I try to spend as much time with her four children as I possibly can. I really wish they could find a cure! My thoughts are with you all,  Karen

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

KarenB,
So sorry to hear that yu lost your younger sister to this horrible disease. It must be so incredibly hard for all of you, especially her children. I cannot even begin to imagine. My Dad is 73, and I cannot except the fact that we may lose him. He does not plan on trying Chemo or Radiation or anything like that, and we respect his wishes. As I am told so many times, I just need to try and enjoy the time we have with him and let him know just how much we do love him. Every 5 minutes I get to talk to him now, mean more than I can tell you. I feel for my Mother who is faced with losing the man she has loved for 30 years. She is hurting and her heart is just breaking, yet she tries to stay upbeat and strong for him. I try and stay strong for her, yet it feels like my heart too is being ripped in half. Currently, everything is still somewhat normal around here. Dad can still take care of himself, and make his own decisions. It is just hard to watch him be sick all the time, and not wanting to do much of anything. He is so much a part of everything around here, I cannot come to terms with it all.
We will know more after Friday hopefully, but I do not think the outcome is going to change.

Thanks for Your Support and Thoughts,

Lisa Ann

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi All,
Well Dad has his Endoscopic Procedure scheduled for tomorrow morning. It has been very depressing around here the last couple days. They say the procedure will only take 20 minutes, so I guess the Gastroenterologist is not planning on placing a stent. He does not think this is CC, but another cancer that has spread to the liver and ducts.
It is all such a waiting game. I sometimes do not think that some of these Doctor's care about what the patient and the family have to go through waiting for a diagnosis.
We were told it was CC and that it was in the advanced stages. We were also told that it would only be 3-6 months before he would be taken away from us. I don't think that we should have been given a diagnosis if they were not truly sure. It has been two weeks of worrying and wondering what tomorrow will bring.

Dad is just sleeping and sleeping. He is taking his Hydrocodone much more often now as his says the pain relief is not lasting as long in between doses. It is so difficult to try and spend Quality time with him, when he is never out of his bed. Dad doesn't talk about the cancer to me at all. I don't know if he thinks he is protecting me or what. Is he angry, depressed, frustrated or is he just getting that much sicker in two weeks.
He hardly eats anything, and some days sleeps 22 hours out of the day.

Very worried and frustrated,

Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Dad's  CA-19 came back 62 with the norm being 30. Can anyone enlighten me with some info on this.

Thanks Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Lisa Ann- my heart goes out to you and your family.  I remember all too well how much torture it was waiting for tests, for results, for doctors.  I'd have days when the only time I could cry would be on my way to work, driving almost one hour on the highway. By the time I'd get there I was a wreck, but I had to show hope in front of my Dad.  A dear friend said to me, "he needs to see hope in your eyes".  I hung onto those words and for the most part, my Dad saw hope in my eyes.  Sometimes he also saw how deeply sad I was that all this was happening.  Most of all I know he felt how very much I loved him. I am certain that he knew he was my hero.

My thoughts and prayers will be with your dad tomorrow hoping for the best possible outcome for his procedure.  It is a very difficult journey, I know your dad appreciates all the support he is receiving. I am sure he feels stunned at the speed that everything is occurring. Your love and support will be the best medicine he will ever get.  Prayers also going out to your family and you... it is so difficult watching someone you love become ill.  It changes your entire life and it forces you to grow up, regardless of how old you are.


Peace to you and your family,

Missing U

20 (edited by Lisa Ann Fri, 14 Sep 2007 05:52:46)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Missing U,

Thank you so much for all your kind words and thoughts. I am trying very hard to show him support and love. It is so difficult to do, for he sleeps most of the day. I know that today is going to be hard on My Mother and I, as we take him for the procedure, and then have to be told the findings. I feel like he is being diagnosed all over again, just like he was 2 weeks ago. The pain I am feeling is undescribable. I had pulled myself together 2 weeks ago, and now I am falling apart all over again. I will find the courage to be strong for him today, and get the crying and anger out of my system before we go.

I will let you know tonight what we find out today.

Love Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

oh Lisa,

as much as you need to support your dad, especially when it's not clear cut as to how to do that, you need support for your own emotions.  i don't know how you will find time, energy, etc. to do that, but i do hope that you will find a way.  otherwise, the tremendous stress you are going through will tax your immune system.   

your father most likely doesn't know how to express his fears.  perhaps he's afraid to face the reality of his disease.  it took me months and months for the reality to hit me and i'm pretty much an open book when it comes to emotions.  you are doing your best to take care of everyone else, please take care of yourself.  barb h (since there is another barb on this site, i will start signing as barb h)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Well Here it Goes............The Endoscopy revealed that there is no stomach mass as seen on the Cat Scan and there is also no Esophageal Cancer either. He does have a large Hiatal Hernia and some inflamation in his stomach. The Gastroenterologist also does not beleive that he would have needed a stent placed now, because his bilirubin is only 1.8. His CEA is normal and the CA-19-9 is 62, which he says is not high at all.
So here we go again.........He now has a liver biopsy scheduled for next week sometime and we go from there. Only good thing that came out of today, is that they will finally give him something to control the nausea. He prescribed ZoFron and Prilosec which he had already taken in the past.
I still beleive that the Radiologist was correct in his diagnosis of Cholangiocarcinoma. All of his symptoms fit, and he is in pain all the time. No Appetite, vomiting bile and the weight loss. His Family Doctor stated that the results of the CA-19-9 are indicative of a malignancy.

So we wait again till next week. His spirits were better today, and he is home and sleeping now. He ate 2 pieces of toast today, a half of a hamburger, coffee, juice and iced tea, which is more than he has eaten in days.

So off to letting the dogs out and the horses out to pasture as we just got home. I will write again later with other things I am sure I will remember from the conversation.

Barb H., Dont worry, I am taking care of myself it is just depressing not knowing things and what is going to happen next. I am just more concerned about my Parents well being right now. We just want to know what is wrong, and we do not want him suffering and in pain.


Take Care,
Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Dear Lisa Ann,
My fingers are crossed that you'll have promising results from the tests on your father. I think it's the best thing to wait for the biopsy results -- that's what I insisted they do for my mother, as they also weren't sure what she had and they made her go through a colonoscopy and other tests before they did a liver biopsy. At least a liver biopsy usually gives a definite diagnosis -- so you won't feel like you're stumbling in the dark and you'll finallly know exactly what you're dealing with. Until then, much hope and support going your way!
-Joyce

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Joyce,

A consult with the Radiologist performing the CT guided Liver Biopsy is scheduled for this coming Monday and they are promising to get him scheduled for the biopsy next week also. They also wanted to do a colonoscopy first, but we managed to get the biopsy first.
Thought today was going to be a better day for Dad, he woke up early, and we headed for the Flea Market, which he enjoys. He was feeling okay and in good spirits until we got there and you could just see in his face something was wrong, He wasn't feeling good. We only walked for an hour or so and headed home. On the ride home the vomiting started, and it was heartbreaking to watch. So needless to say, I got very upset. Dad was up until now,  a healthy man, so it is really difficult to watch some disease just take over his life.
I pray every night to just keep him comfortable, and pain free. Today he took his first dose of ZoFron, but no relief as yet. I sure do hope that it gets into his system, and begins to work soon. I think if we could get some of these symptoms under control, things would be a little better.
I thank you for your support and hope, and will let you know the outome of the biopsy.
Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

hi lisa, just read ur story and it was so touching brought bk memories for me, i lost my mum 52 april this yr after just 8 wks of diagnosis with this awful disease, she too had same symptons the thing is with the disease in most cases its 2 advanced to be treated my mum was stage 4 wen diagnosed. the ppl on here are absolutely fantastic dunt no wot i wud av done without them. i sincerely hope they can control ur dads pain as i watched my mum suffer its terrible and u feel useless, my thoughts r with u n ur family at this time x