My Dad, diagnosed in 12/2008
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Stan,
Was reading some of the posts, and checking to see how your dad is doing. I saw you’re from Alb. We are in Roswell, and my husband was diagnosed with cc. From what I always heard it was a rare cancer, and I know of 2 others here that had it…plus they were neighbors. Any way enough of that. Just wanting to see how your dad is and what the Dr.’s there are saying.
Stan,
I, too, come to this board because of my dad. I know exactly what you mean when you say sharing your experience makes you feel good. The lack of knoweldge and challenges associated with cc can make you feel as if you are on an island.
By now I am guessing that you have visited the different rooms available on this board. Know that the search feature really works on this site and if you feel like you need to know something you will likely find information in one of these rooms. And, of course, ask/post anything – someone here will likely know.
Take care,
Bz
You all are great. Thank you. The world is full of caring people, and it makes my rejoice in God that you are all out there. Thank you, thank you, thank you. I haven’t had anyone to talk this frankly with, and it is very good.
Dear stan. iam sorry for what tortous pains taking after math you have undergone with this cc. journey and the out come is not upto the pains you have taken. no doubt that cc has metastised into liver through biliary radicles and he has bilesepsis due to blockage . but there may be gleam of hope that liver itself can fight for your dad in detoxifieng the bile getting alternate passage from the existing blockage. as said by Lainyy no body can tell or predict as who and one date one can die. miralces do happen thogh the prognsis is poor. hope for the best and accept the out come . be courageous and confident to face the realities . Dr Mahipal reddy
Stan….Your experience mirrors that of many others on this board in that this cancer simply, has no early detection mechanism. I rears its ugly head mainly, in the later stages of the disease similar; to the way of your Dad. My heart goes out to you and your family. All of us understand so well.
My hope is for one day early detection to be in place as those patients seem to fair the best.
Every conference I have attended on behalf of the Foundation has brought with it just that…hope for early detection and hope for different treatment options. The committee for clinical trials I am involved with is focusing on Cholangiocarcinoma, presently. This again fills my heart with hope. Many physicians and researchers are working of finding ways to combat this dreadful cancer and one day, I believe, the answer will be found.
I am wishing for your Dad to be guaranteed the comfort he deserves and for your family to be strong in this trying time.
Much love coming your way,
MarionWelcome Stan, to the best little club in the world that no one wishes to join!
You have read enough to know that this is the most courageous, loving group you will ever come to know. It honestly sounds like your dad has a good and aggressive doctor. No one has an expiration date stamped on their feet we always get great surprises here. My husband Teddy is a Miracle! 4 years now since his Whipple surgery and he will be 77 in October. You just never know.
Use this time to lovingly store away some more great memories and above all have hope. Please feel free to come here to vent, ask or advise. You will find this site to be comforting as well as addictive! Please keep us posted. I kept this short because you seem to have already caught the drift which is half the battle.Wow. I typed this up during my “shift” watching my Dad a couple of hours ago, and already two responses. I am humbled that there are people in the world that take time to care. Thank you Louise, thank you Jan. This SUCKS!!! I feel so bad for my brothers, for my sister, and especially for my Mom. I have always felt for my Dad…to have been ripped apart like he has breaks my heart.
Stanvq,
Thank you for writing, and I’m glad you found this site. We will be praying for you and your family. Yes, this cancer is ugly. Part of its ugliness is that by the time it is diagnosed, it is usually advanced and hard to treat. Also, because it is rare, little research has been done on it. Thus, the insurance companies consider many treatments experimental and therefore, not covered. However, the insurance companies can be successfully fought.
No matter what the doctors think or say, they do not know your Dad’s expiration date. His will to live, desire to fight, and attitude all play a part in how the disease progresses or not. Many people on this site have outlived the life-expectancy voiced by oncologists. So learn all you can, enjoy the moments you can spend together, and accept each day as a gift from God.My cc was diagnosed in May 2007 and I informed my oncologist on my first visit that I didn’t want to hear a prognosis. We have fought a good fight. I’ve had an ERCP, stents, chemo, radiation, and surgeries and at the moment, I am in remission, winning the battle, and completely off all medications. No one can predict or guarantee solutions, an action plan that will work OR an expiration date, so it is up to the patient and family to determine which paths seem right to you. It may be simplistic to say that success depends on how many days he survives, but that is only part of the story. Each day, the decision to continue a treatment plan or switch to a different one, to pursue alternative therapies, find a different doctor, or choose to do nothing more is the right decision when the patient makes educated choices. Of course, we don’t have perfect knowledge, but no matter what choices we make, we don’t have a guaranteed outcome. This is usually hard to accept, but faith is also an anchor in the battle for those who believe.
My mom was diagnosed with cancer in 2007 at the age of 86 and she chose not to pursue chemo, radiation, OR surgery. Her oncologist didn’t think she would last a year, but she is still with us. Of course, without such treatment plans and tissue to send to a pathologist, complete diagnosis has not happened. But Mom has been a prayer warrier. She can still get out of bed unaided. She can walk to her easy-lift chair and fix foods of her choosing when she feels hunger. Her memory is not what it once was, so she chooses not to take any medications unless her attendant or family prepares it and gives it to her. However, she has begun to experience pain. She is reluctant to take much in the way of pain killers because she has had hallucinations from pain killers, and she doesn’t want that again. So each day that she gets to make choices, each time that she uses her prayer beads, and each step in her endless cycle of chair/bed/kitchen/bath represents another success for her. She has begun to say goodbye to all her children and grandchildren. We struggle with saying goodbye to her because we will miss her fiercely, but at the same time, we do not wish to see her suffering, and we know that we do not get to make the final decision. She is ready to go and she misses Dad. They had been married for 60 years before he passed away in Nov. of 2005. I remember Mom told Dad that it would be okay if he let go, that she would be okay. Only a couple of days later, he died in his sleep. I wonder how many of my brothers and sisters have said (or need to tell her) it is OKAY, we will be okay. I know that I have told her. These are never easy things to go through, but cancer makes the need to talk even greater for many of us, and sharing our experience helps us survive and go on.
So come to this site as often as you need to, whether you want to ask questions, rant and rave, share successes, or just see what others are up to.
God Bless!
LouiseHi Stan,
I am sorry to hear about your father. My father is the reason I am here also. This is one of the most unpredictable diseases there is. In addition to being rare and complex, it seems to never work the same way twice.
I wish your family peace and strength,
Jan
Hello all:
I write this in my Dad’s bedroom, as I watch him dosed up on liquid Morphine, having accepted the inevitable last Wednesday, that hospice is the only option for him (“everything humanly possible has been done for him,” was what his oncologist said). On 11/11/2008, his urine turned amber in color. Up to this point in his life, he had been healthy and strong. Over the month of November, he became jaundiced, and the PCP communicated that it was because his gall bladder was going kaput (he is 78), and would have to be removed. They couldn’t get him in for surgery until mid-December. I firmly believe, though, that the first symptoms for this cancer started two years ago, when my Dad, who had never had heartburn in his life, had to be prescribed prilosec because of consistent heartburn that started when he was 76.
Because my sister was coming into town for the holidays and my Dad didn’t want to be laid up while she was here, he said he would like to have the surgery after Christmas. He had a couple of EVRP (?) stent procedures, where they put a long tube down his throat, through his GI tract, to his biliary tree, to place stents, to try to get his bile to drain. These were awful procedures that my Dad absolutely hated.
On 12/23/08, my Dad had uncontrollable shakes and a spiked fever due to an infection with a recent stent put in. We had to call the paramedics to have him transported to the hospital. After they stablized him at the hospital and gave him CAT and MR scans, it was determined that he had a high probability of cancer, and a probability for cholangiocarcinoma. We were told that the best care would be in Houston at MD Anderson. We were all so overwhelmed, and had the mentality that we should do what the doctor suggests without question, we started the process of trying to get him to Houston for treatment. Because of his health plan, MD Anderson would be considered outside of network, and we would have to pay out of pocket. My Dad and Mom, bless their hearts, were willing to do just that, which would have been $100,000 in treatment. We battled the insurance company for a month, until finally my Dad decided that he would like to be treated at our local cancer center.
On 2/03/09, my Dad had a major resection, eight hours on the operating table, that took out his gall bladder, a major portion of his large intestine, and part of his liver. It was verifed that he had cholangiocarcinoma, a klatskin tumor, and the cancer had grown around the hepatic vein of his liver.
It took him eight weeks to physically recover from the resection, although he was nowhere near where he was prior to the surgery. After recovering, the goal was to get his billirubin down to an acceptable enough level to begin a clinical trial for two chemo drugs that were approved by the FDA for pancreatic cancer but not cholangio. His billirubin did not decrease, but increased. To alleveate this, two stents were placed in the major biliary treens (these were done by my Dad being “speared” by something that could be described as a fencers lance, from the outside in), once on his left side, once on his right.
The cancer has travelled up his biliary tree; if you can imagine a watershed in the mountains. There is one major river (the main biliary duct) fed by two minor rivers (the two main parts of the biliary tree), and above the two minor rivers, many, many “creeks.” The cancer is up in the “creeks,” forming pools of bile to form, with nowhere to go.
It was told to me by the oncologist that more than likely the inability to dispel bile from the body will result in a toxicity in the liver, causing liver failure, coma, and death. He gave my Dad three weeks to two months to live, as of last Wednesday.
I write this for a few reasons. #1: Therapeutic. I didn’t know this chat board was on this webpage until today, unfortunately. It feels good to share my experience with people that know. #2 To provide info on one case for those out there looking into the great unknown. God is with all of us, and we all will have unique experiences. But fear of the uncertain is tough. #3. For anyone out there that can provide any insight as to what is next, compared to your experiences.
God bless all of you, all of your families, and all of your friends, who have had to experience this agressive, ugly disease.
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