Re: ELEVEN YEARS

Thank you. You are very lucky.  According to many scientific research Cholangiocarcinoma is considered to be an incurable disease.  What is the name of the surgeon ?

“What does not kill us makes us stronger.” – Friedrich Nietzsche

Re: ELEVEN YEARS

His name was Dr. J Michael Henderson at the Cleveland Clinic, I received a letter announcing  his retirement about a year ago. He was an older doctor when he did my surgery eleven years ago almost to the day (01-26-2006) and my ERCP doctor referred to him as "the very best" so I chose him.I am glad I did...I will be posting more about that milestone in 5 days,  Pat

Senescence is a beautiful thing....

Re: ELEVEN YEARS

Here it is, January 26th, it is even a thursday just as it was 11 years ago. How time has passed, even with the uncertainty of the next month or year. I am pleased to say there is no bad news here, just good, I have actually started addressing all the little things people without cancer do ( go to the dentist, the dermatologist, oral surgeon, all kinds of doctors, PCP) and nothing related to cc. Wow, imagine a whole year and no issues at all wit cholangiocarcinoma. It is wonderful to say to the world that sometimes it goes well, know that it CAN. I am getting older, and to some it might sound like a complaint, but here it is just a statement of the fact, a proclamation maybe, but not a complaint, I am Patrick, I had bile duct cancer in 06' and I am here to show the world  that this cancer can be surgically removed and a normal happy life can be had. It is getting hard to remember all that I went through. There is eleven years of living life between now and that surgery, The thing I struggle with most is patience, Living with uncertainty makes you always in a hurry to get things done. There is, it seems, an underlying rush at all times, and my mind goes into hurry up mode if I pay no attention. My advise, as a long term survivor is this....Slow down enough to read life's roadsigns, as always being in a hurry equates as stress. So there you are, slow down, enjoy the life you have...it may be longer and better than you ever dreamed it could, god bless all of you, Pat

Senescence is a beautiful thing....

Re: ELEVEN YEARS

Dearest Pat, BRAVO, BRAVO! I know you worked hard and did everything right and now you are an honest to goodness MIRACLE! Yes, life is for the living even going to a Dentist! I am so excited to meet you next week.
LIVE every moment!  LOVE beyond words!  LAUGH very day!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: ELEVEN YEARS

Hi Hercules,
You have an incredible story, and thanks for sharing.  Hopefully we see more cases like yours in the future.  Also, this includes people who are unable to get surgery as you were able. Sorry if you have mentioned this, but what is the anti inflammatory drug you have taken?  Did you follow a strict diet?

Thanks again, and hopefully we have more like you sharing stories.

Re: ELEVEN YEARS

Hello positivity, I initially quit eating fried food, pretty much all fried food, just boiled, baked or grilled, steamed, and no deep fry, pan fry, or alcohol for a year. I lost eighty pounds and I have kept it off for ten years. I began drinking alcohol moderately after about a year which seems to stimulate bile production. The pill is Meloxicam and I take 1 a day.  I started with 7.5 mg. pills, and later upped the dose to 15 mg. pills. They are hard on the stomach and must be taken after a meal. They open up the bile duct and have helped me avoid dealing with a stent. I eat healthy, you get sick of salads but there are a lot of vegetables out there too. I make a stir fry with canola oil. I love rice and pasta dishes, and eat what I like with common sense. I hope I answered your question, I have appetite problems and cannabis helps me eat more and more often. I actually have difficulty keeping my weight up, perhaps because bile is a digestive enzyme and when it is released at the wrong time nutrients aren't absorbed well, and sometimes I eat like a horse and just barely keep my weight up, I call it sport eating.  The elderly woman I help can't believe how much I eat and how thin I am, 160 lbs. and 5' 11"  I feel this is a good weight and wouldn't want to be any lighter. That is my dietary story, take care, Pat

Senescence is a beautiful thing....

32 (edited by DawnaN Thu, 08 Jun 2017 12:10:17)

Re: ELEVEN YEARS

Thank you for sharing your story.  It gave me hope after researching and seeing some stats that really pulled me down.

They just found cancer cells in my distal bile duct...in December 2016 the brush biopsies came back negative.

Re: ELEVEN YEARS

DawnaN, a tumor in the distal region, if caught early, is operable . Brushings on the exterior of  a intrahepatic tumor are often negative while the center is cholangiocarcinoma, as mine was. Don't be discouraged just hope for a surgeon to tell you he can help you. Find a hospital with experience treating this cancer. Be brave, this can be beaten .  Pat

Senescence is a beautiful thing....

Re: ELEVEN YEARS

Hercules,

Thank you for your encouragement back in April. I am now recuperating from a Whipple surgery where they took half of my pancreas out along with my duodenum, part of the common bile duct and a bottom portion of my stomach. It turned out the tumor was in my pancreas and grown to the duodenum causing the restriction problems I was having. Unfortunately, 7 of the 19 lymph nodes they took out in that area had cancer in them. The tumor itself had good margins all around it.

I go to see the chemotherapy oncologist next Monday and chemo should start in early July.  I am now recovering from Whipple surgery where they took out half my pancreas, my duodenum or most of it, some of my common bile duct where the restrictions were taking place, and the bottom portion of my stomach too.

Upon seeing the surgeon last week, he said that the surgery went very well and that he could see I was doing extremely well myself recovering, although I hadn't felt like I was. He stated though that compared to many many others, my recovery was excellent and to keep positive. Good to hear.

It's hard not to pay attention to the horrible statistics regarding my type of cancer. It seems to be a death knoll. They made it clear that if the cancer does come back that there is nothing else they will be able to do for me, so at the same time I am trying to be positive I am also realizing the need to get a will done and make funeral arrangements so that all these nasty things are taken care of and I can put them out of my mind and not leave anyone a mess to deal with. Such a strange time of life!

Thank you to everyone for your stories here. It helps!

Re: ELEVEN YEARS

DawnaN, congratulations on a successful surgery, and I hope you feel stronger soon. please understand some people respond well to chemo with a minimal side effects. There are success stories that are not written here. I met a very nice woman in Salt Lake at the conference named Christy and she had a very good response to chemo, which completely killed all cancer cells in her tumors and when operated on all cancer was necrotic, or dead tissue, the surgeon said he never had seen anything like it. I have met with her and her husband since and she is doing great. I saw her the day she had her staples removed, and it really took me back. I love it when anyone does well, and I hope your success continues. Please remain positive and hold off on the funeral plans until a reoccurance, which may never come. Do not rule out that your success CAN continue. Remain positive and hopeful, it puts you in a better frame of mind, increasing odds of a successful outcome. Enjoy every day you are blessed with and live life, do what you love, have fun like before, sometimes it goes on for a while, keep yourself well,  Pat

Senescence is a beautiful thing....