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(4 replies, posted in General Discussion)

Hello Cindy, the anti-inflammatory drug is Meloxicam, I initially took it for arthritis and a bad shoulder only to discover the effect on my bile duct. We increased the dose from 7.5 mg. to 15 mg. and that is where I am....still getting along without a stent and it's possible complications. I have Primary sclerosing cholangitis  (PSC) which is an inflammitory condition in the bile duct, this pill seems to keep things working for now....I am not a doctor or nurse, I am a patient who listens and asks questions and reads and researches anything I want to know about. I write this here to share my successful results from taking this medication hoping someone can also get positive results. The pill is low cost and generic is available, so other than taking it 15 minutes after a good meal there is not much to trying it. I hope  this helps you Cindy...Pat

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(10 replies, posted in General Discussion)

Oh dear Positivity, I am sorry your mother is not doing well, your presence here has been huge and you have a caring, thoughtful way of approaching every challenge, Kudos to you. The human appetite is a delicate, yet normally automatic mechanism, if you study it there are many communications in the GI tract that use hormones and amino acids and it is complex. My appetite is still abnormal almost 11 and a half years past surgery, I can either not be hungry for the day or become incredibly hungry at the drop of a hat. Things that stimulate my appetite, wonderful smells of food cooking, cannabis, preparing a dish, especially a favorite dish, is stimulating. Also things that digest easy like soup is appealing usually. I have problems on and of with an appetite 'swing' of too little or too much appetite, My weight can fall quickly so I eat as much as I can, I don't own a scale. I am weighed at dr. appointments and that is it. I try to pig out before appointments so there are no red flags. I know how you feel, it is hard to be powerless, I have offered the things that help me,yet we are all different,hopefully something will help, remain positive....we have loved your presence here and just be strong in this difficult time, try the smell of a roast chicken , that usually gets me, I wish you the best, Pat

3

(89 replies, posted in Introductions!)

Welcome Rhonda and I am both sorry you had to, and happy you found us. Many intra-ductal biopsies show a benign or 'polyp like cells' on the exterior of a tumor in the bile duct, as mine was. I was told back then that often cells on the exterior of a tumor is benign yet inside it is cholangiocarcinoma. I went with his recommendation and scheduled surgery asap. If you have a chance for surgery go for it, this is tough to beat and you have a good chance . Others here recently had the whipple, so read a few stories, a woman from Canada who recently had the operation posted on my survivor story, she is doing well as far as I know, it can go well. I wish you the best, Pat

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(17 replies, posted in Survivor Stories -->[NEW]<--)

Good for you Michelle, you are a champion! Keep fighting and keep being your own advocate, You have made all the right choices. May your success continue, Pat

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(7 replies, posted in General Discussion)

Thank you Lisa, Kris gave me a hug in Salt Lake, saddening how things can change in four months, my prayers are with her and her family...Pat

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(34 replies, posted in Survivor Stories -->[NEW]<--)

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

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(17 replies, posted in Survivor Stories -->[NEW]<--)

I am glad to hear from you Michelle, I was beginning to worry , although many on this forum can be silent for a while, I had hoped you are alright. I have thought about you, it is good to see your post, god bless, Pat

8

(32 replies, posted in General Discussion)

Oh Julie, I am so glad to read you finally got a break...allergies to bandage adhesives I thought this poor girl can't catch a break, wonderful your scan was clean and your blood count is up. May this trend continue, you deserve it dear Julie, my best, Pat

Lainy, our dear Lainy, where will we be without our upbeat cheerleader at the door? I loved meeting you and Mel in Salt Lake, and I hope you and Mel live your lives together and focus on doing all you wish to do together, life is for the living dear Lainy, go live and think about other things than the c word. You have been a beacon of information and hope for so many, and we will have to watch the introductions more closely in your absence. I am sorry to see you go, yet I hope you have time for the pursuit of happier things. Be well dear Lainy, Pat

Oh dear Julie, you have been through so much....I wish I could fly to Iowa and make everything better than it is, and I would if you asked because life is so unfair. You are dealing with side effects of side effects, and if there ever was a survivor to be praised, it is you dear Julie and I respect you and all you have dealt with is amazing. I pray you find a way as you have until now. My best, Pat

11

(3 replies, posted in Members' Cafe)

I was looking at the listings of local classic car cruise ins all of which sponsor a charity, and I had this crazy thought that, as we are trying to raise awareness of our rare cancer and it's unique name, (which has the word car right in the middle) and funding is always welcome, why not have a cruise in for cholangiocarcinoma with all funds directly donated to the cholangiocarcinoma foundation ?  Maybe the cholangio'cars'inoma cruise in  ?  Just a thought, it could work though....Pat
https://s16.postimg.org/65utvnqoh/100_0343.jpg

Wow John !  Your story is incredible and eight years of chemo touring is hard on more than your veins, You are true survivor and I am happy you are here sharing all you have been through. You should read Matt Rieddy's story  and how keytruda turned his chemo tour onto a rest stop. I am glad you are here to share and hopefully learn as well. Welcome to this incredible global group of people that are here for a common reason.   Pat

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(34 replies, posted in Survivor Stories -->[NEW]<--)

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

Jdow, first congratulations for success against all odds. Good for all of you, and , you now know the value of a day of freedom from cholangiocarcinoma......Priceless !                                                                           Your brother is young, enjoy life, do the things he always wanted to do, explore new things, have fun however you define it. Take care of yourself, listen to a beautiful sunrise and feel the warmth. He is too young to be taken...keep fighting, Pat

15

(7 replies, posted in Members' Cafe)

Matt, meeting you in person was fantastic as well, you are a very smart guy, yanked from your life suddenly by this disease ( you still have the banana from that day ) and you have climbed on top of it and are doing well. All the hero's that spoke are brave soldiers, and I see why they call you superman, kris, it was great to meet you too, and marion, it was nice to finally meet you as well, had a great time and hope to see you all again, Pat

Nothing against Theodore, in your own words, life is for the living, and it is nice to hear you post about Mel and You that is all, I had hardly seen you post about him, and he seemed so genuine, like so many I met there. That is all dear Lainy, good to hear about the living guy in your life, you two are great, Pat

Lainy, It was nice to meet you also, and everyone else too. Salt Lake was an interesting place with history lessons and old buildings , mountains (which we don't have here in Ohio )  and I think they are beautiful to look at when it is not your normal backdrop, they are incredible. Mostly the people were the big attraction and most do the facebook thing and are poking their phones and I am just not there yet ( my smartphone is a juvenile amongst most other smartphones a volkswagon beetle you might say, and they just speed right by me lol .) Anyhow it was a fasinating educational fun time and I met so many ( Lainy your man is a great guy, talk more about him and less about Ted, just a thought ) It was wonderful meeting you both and I hope to see you both again sometime, take care, Pat

18

(7 replies, posted in Members' Cafe)

Hello everyone, I came to Salt Lake for the Cholangiocarcinoma seminar and it has been a very powerful, motivating, emotionally charged event. It has renewed the passion that brought me to this site, Meeting so many that have created this organization and made it grow into what it is is amazing, There are people here that came from Australia, Indonesia, halfway around the planet to reach out to this group, to get information first hand, and to find hope. It has been a long time since I felt the reality this disease really is, a life and death monster. Being with all the patients that are here fighting their battle, sharing their experiences, scientists and researchers speaking of ways to treat this cancer, doctors sitting with us through this seminar and meeting the moderators and patients has made this week inspiring, emotional and educational as I have learned more than I expected.  The people that have come together here are incredible and it takes me back to the feelings I had while lying in that hospital bed eleven years ago. If you wanted to but were unable to attend this event I would urge you to come next year, the motivation and energy of this group is fantastic and I am hopeful that THIS GROUP will change the footprint of Cholangiocarcinoma on a global scale. I have had great time here and I want to become more involved with this group whose arms reach around the earth. Watching the webcast doesn't compare to being here with so many wonderful faces of patients and speaking and interacting with so many that are in varying stages of there fight, I urge you, if your life is touched by this disease, to come here next year and experience this assembly of people, it will change you, Pat

Julie, you have fought an incredible battle, had numerous setbacks and you got back up and kept going,you too are a cc miracle, and winning that fight has beat up your poor body. Just keep getting back up and keep being a winner. You are a champion of this board, I hope you have the strength to fight on as you have, god bless, Pat

great to hear your mother is still doing well Catherine, it is a success story that is as big as mine to be cancer free after being told she is inoperable. Now there is a miracle beyond all in my book, may her success continue, Pat

21

(34 replies, posted in Survivor Stories -->[NEW]<--)

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

I have explained the name before, it has been a while, this is a 1941 chris craft deluxe runabout with it's original engine, a hercules flathead  used by chris craft for many years. Most wooden boats don't last this long, and even fewer have their original engine. This old girl has not only original wood throughout, but also it's original engine which is still running strong. I can only hope to be as timeless as this old engine and craft, and keep doing what I have always done, and look good doing it...Ha...just had to throw that in, for a long time yet. Hope everyone has a remarkable January 26th, Pat

January 26 marks my eleventh anniversary of my liver resection surgery, which is still 'working' I guess. My case has required no other treatment at all.  I hope things continue as they have.Here is a picture of my grandaughters and my dog Boomer being wisked along on lake Erie by the old Hercules motor from which I took my screen name. It is still running well, don't you think?  Here's to a happy eleventh, Pat
https://s28.postimg.org/6l0hxg0jt/100_0207.jpg

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(34 replies, posted in Survivor Stories -->[NEW]<--)

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

25

(34 replies, posted in Survivor Stories -->[NEW]<--)

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