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(27 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

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(17 replies, posted in General Discussion)

Hello all,  well I have booked a flight and a room and registered so I guess it is on... I will get to meet all of you who I have only known by the internet so I will be there in the flesh to prove I am not just an internet mirage or something. I want to hug everyone there who has made this site what it is. I will see you all in Salt Lake, I arrive the 31st so I should be there for all the fun. see you then, Pat

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

I believe it was 1b at time of resection,, Tumor was small (2cm.) when discovered by ultrasound of my gal bladder, pathology found cancer in left lobe of liver and in left hepatic duct no lymph involvement. portions of bile duct which were removed showed positive for PSC . My surgeon was incredibly good and I healed well. This surgery is complex with multiple individual difficulties. Most cases aren't found so early. I was, and continue to be, a very fortunate man. I hope you can be the same, Pat

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

No, Alikemal, I have not had chemo, I had a resection surgery (70% of liver removed) gal bladder and partial duct resection .  At the time my oncologist recommended that I forgo chemotherapy . He said there was no effective chemo for my cancer. I take an anti inflammitory  drug that seems to open up my bile duct and has kept things working for a few years now. No stent, no further treatments whatsoever since Jan. of 06' . I have said it is, perhaps, the best outcome one could ask for. My digestion and functionality were perfect for maybe 8 or 9 years. I have had some bilary restriction issues that for now have been kept in check with the Meloxicam.     Take care, Pat

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

Ubri,  I understand that many people are more fearful of chemo than the cancer itself. I have gone to local cancer   support groups and sat with people that are receiving chemo treatments at the time and some get relief from symptoms of the cancer. Everyone is different and every case is unique in some way but similarities are many.  Perhaps attending a local cancer support group would give you the opportunity to talk with people  getting treatments and tell you first hand the good and bad. There are herbal products that claim to help the body fight cancer, but once a tumor has formed it becomes a more difficult battle. I hope You find a treatment soon, Do what you must do, surgery is not easy either but one must do whatever it takes to stop or slow this cancer.  I wish you the best, Pat

I am not great at all things computer related, yet I will try to post a pic of myself and the 96 year old woman I help with her daily needs. She is still independant  and as she says, still has her buttons about her, meaning she is still mentally sharp. I hope to come to Salt Lake this year to meet some of You in person. Have a great holiday season, Pat

https://s29.postimg.org/5vx8erjg3/100_0280.jpg

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(1 replies, posted in Members' Cafe)

If you want to see a heart wrenching  story watch Santa talking about a 5 year old boy who is dying and told Santa this in a very matter of fact way, and his only wish is to not miss Christmas. I am not good at putting up links, but if you want to cry like a baby, watch this and think about the gift we have every Christmas just to be here to appreciate all that it is to us old and young. May you all have a blessed holiday season, Pat

Thank you Barry, that is why I am here. It is actually eleven plus now. How amazing to have a run of luck like this, huh? I am blessed with eleven years of life with no restrictions after diagnosis, If caught in time with an experienced surgeon and all the planets align it can work out better than expected. I wish you the best, Pat

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(4 replies, posted in General Discussion)

Chinese chick, when I first came home after surgery, my oldest daughter, who was my primary caretaker when I  came home found an herbal tea called  Esiac tea and I don't remember the herbs, maybe three and I won't  mention the company, this is an herbal blend that has been around since the twenties and there are stories of incurable cancer suddenly reversing and clearing up. I did drink this tea every evening before bed with honey, and it was soothing and it helped me rest during a time when things were very uncertain. Maybe for two or three years, then I just sort of phased it out because it wasn't cheap. My oncologist knew of this and said take it if I wish. Good luck, Pat

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(391 replies, posted in Introductions!)

Matt, a big high five on your incredible results with this trial drug, I hope there is more positive news  with You and others. Here's to your continued success, Pat

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(1 replies, posted in Members' Cafe)

Hello everyone, this may be relevant and it may not, however seeing as my case has gone well, i thought it might be worthwhile to share a detail of my daily life that could be a part of my successful outcome. I have always loved to soak in a warm/hot tub of water and have always enjoyed the mental/physical detachment from the noise of our world and find a soothing escape from it all. I have taken baths from the day I came home from surgery, I kept my stomach above water level until the staples were removed, but I was bathing as soon as I could. I do now and only shower when it is too hot to stand a bath. My daughter took a natural medicine type class and told me a bath is known to be beneficial to the gut and digestion, it also helps the body sweat off toxins and keeps the aspiration of liquid throughout the body. Just thought I would share this detail as most men don't like to take a bath, however in fall and winter a hot bath is priceless in adapting to cooling climate.So there it is, perhaps the power of a hot bath goes well beyond just warming you up and washing, take care, Pat

Catherine, what a wonderful anniversary, Your mothers story gives hope to so many who are told resection is not an option. I have known a few patients that would have wished for this kind of outcome. May your parents blessing continue for many more years.  Pat

This thread makes me cry . It is  sad and beautiful at the same time. So many that were taken too quickly. My heart goes out to everyone here. I have always become lost trying to move pictures around my computer, I hope to learn how, You are all hero's to endure this cancer's wrath. God bless the surviving families, life is not fair,  Pat

Wonder, Congrats on 5 years, a great start!  My C 19-9 has changed over the years, the first 6 years it was always around 10 or 12 and lately it has come down. My onc. said smoking cannabis would elevate the reading, not to worry. i would look at your levels just before your resection surgery to first determine if the C 19-9 was elevated when you know cancer was present. C 19-9 is not always an accurate indicator of the presence of a tumor. How elevated is your level? Understand it may not be a re-occurance. Try to not panic until an image verifies such a thing. This cancer will fool everyone, the doctors and the patients quite regularly so try to be strong. Elevated levels are sometimes a reason to look further with an MRI or a CT scan . It is your doctors call but if I am worried I ask my doctor about taking a look, and one time we did and it was a false alarm. So my plan of action would be to schedule an MRI or scan and let a radiologist take a careful look. It is part of the excitement of being a long term cc survivor, welcome to the club. If one was just done I would do another blood draw in a few weeks to see a trend up or down. The upside is you are living a life which was impossible 50 years ago, so every day is a miracle over and over. I hope this is just a hiccup in the system, good luck, Pat

The drug is called Meloxicam, it was initially prescribed for a bad shoulder joint which is an old injury that is a source of pain when the weather changes. I noticed after beginning the medication my stools are dark and my urine has returned to light yellow. When I spoke with my doctor about this, he told me when any part of your body is sending a strong pain signal to the brain a stress hormone is released causing numerous sites of scar tissue around the body to "light up" as he put it with inflammation. We are not only treating your shoulder he said, but your scar tissue in your bile duct as well. This has worked well now for almost two years, we have increased the dosage from 7.5 to 15 mg. which worked better. It is a reasonably priced pill at 1.00 for a thirty day supply. It is hard on the stomach and must follow a decent sized meal. There it is Marion, the whole enchilada. I hope someone can put off a stent as I have , as that is often the site of further life threatening problems (not always though...I know a 20 year liver transplant patient with a metal stent that has been in place for more than ten years ) so stents are not always problematic. He is doing incredibly well also and he is one of my hero's . Thank you all again, Pat

Dear Anne, what you have shared is amazing. If 20% of patients can be helped is huge considering only 10% of patients are operable when diagnosed.  Please continue as I don't understand why more research is not done in more countries. You have gone around every blockade you have encountered with this disease and moved ahead and made progress and found answers. Your determination is inspiring, and I hope your results are as incredible as your spirit. I wish Your husband and You the best outcome possible, Thank You, Pat

Here it is September 21st already, the day eleven years ago an ultrasound discovered a soft tissue tumor in my left hepatic duct just before the point where left meets right. Wait 6 weeks to see a Gastrointestinal specialist, wait 3 weeks for ERCP then wait 5 days for results/recommendation, then make appointment to see surgeon, it was 4 months before anything was actually done, a liver resection removing 60% of my liver (left side)  January 26 of 2006  I was home in 5 days, healed well, had no further complications, went back to work in ten weeks, and have managed to have a normal life since. I have restriction issues in the duct as it builds scar tissue at the point the bile duct was sutured together. My primary care doctor helped me find that an anti inflammitory drug that opens the restricted bile duct enough to keep things working. I am healthy and able to do anything a man my age can do. I am pleased to share that another year has gone by without any difficulty other than taking a pill every day. I suppose it doesn't get better than this. Sometimes things do work out well, just not often enough. I try to show every day I am grateful to be here  by helping others and giving more than I take as a rule. Stay active, be smart about what you put in and on your body, and don't think about cancer all the time. Try to stay busy enough to not have time to even think about it. I guess that is my story, I had many good breaks through it all and I hope the stars align for someone else soon. God bless, Pat

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

Michelle, I am sorry, I read your reply before your incredible story, and you are spot on, you are alive and living, you have so much to live for, and your strong outlook is everything, I was very lucky in so many ways. I believe positive karma is a huge part of our outcome. We don't lay down and let it happen, when necessary I will take chemo or anything they advise. I am not afraid of the future, but only hopeful. All along I have dealt with this unsure but hopeful. My outcome has been by far better than most, but there are those here who have had great success with chemo, and other treatments. We must evolve and learn from those who had success. I have always wrote value every day and use your survival instinct to guide you every day. I hope your battle continues to be a winning fight,  Pat

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

Thank you Lainy, Gregg, and Michelle for your replies, Lainy, time passes quickly, hope you remain cancer free for many more. Gregg, just remain positive and live life, I retired at 54 and I believe it is the best thing that I ever did as it helps you remain stress free. Michelle, a moderator of a local cancer support group I attended cited a statistic that over 50% of all cancer survivors experience some level of insomnia, and let me tell you, insomnia can destroy you. Making your bed a place You love to go, spend money on it and make it look inviting and comfortable, as a survivor it will be the best investment You can make. Being well rested helps the body more than any other requirement so never forget 1/3rd of your survival is spent sleeping, so make it as enjoyable as you can.  Thank You all again and keep going,  Pat

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

I am just eight days before the eleventh anniversary of  the discovery of my Hilar cc tumor in my left hepatic duct. Tears well up in my eyes as I type it, no one was so ever grateful for any blessing life could grace me with. I am doing well, a recent blood draw shows no elevated anything, just normal. I am here to say this disease can be beaten for longer than anyone told me it could. For all you people new and looking for hope, please know it is possible. I have needed no treatment or anything after my January of 06' surgery. No stent, no further treatment other than watching for a sign of this awful cancer's return.  I have continued to try to help someone every day in some way, and I just hope someone reads this and realizes a beacon of hope does exist. I was out fishing on lake Erie today with my son (we didn't catch anything as the wind turned against forcast direction ) I still had a banner day and even love a day fishing with no fish... how cancer changes the way you look at everything, so there it is, my story of long term survival with no repercussions, I hope more of us can write these emotional words, as it's hard to share how I truly feel as I have somehow cheated this awful demon from taking another good life away.  Early diagnosis and prompt treatment are key to beating this disease, if you are fortunate enough to have symptoms that lead to the discovery of the cancer early that is the first thing one needs. secondly to not have a re-occurrence . I lost eighty pounds from time of diagnosis to 3 months after surgery.  I had an unusual tumor, which was likened to a small mushroom rather than like a wedding band on the inside of the duct as most cc hilar tumors are .from there they usually grow through and surround the bile duct wall, where it usually quickly grows around the portal vein, which is a direct link back to the liver. All of these things are a part of how it went so well, or differently. I have primary sclerosing cholangitis which they say increases the likelihood of a re-occurrence , yet I have remained cancer free. I use cannabis for appetite, pain management, and also because I like it. I eat healthy and remain as active as I am comfortable. Keeping weight under control is part of it, not to much or too little. Avoid tobacco smoke and polluted atmospheres, and don't allow this condition to stress you out. Sleep is important, go out and buy yourself the nicest mattress you can and splurge on that 1 thing. I cook all my own meals and I have a dog that walks me every day. there it is, I am happy and humble and grateful, and god willing I will be around a bit longer, I hope more long term survival stories come soon,    Pat

Congratulations Derin,  5 years can sneak right by you, and that is good, according to the medical community, you are considered 'cured' at 5 years.  Every year, month, or day is a priceless gift, may you continue to be able to do the things you love and live life fully every day. May your good fortune continue, Pat

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(2 replies, posted in General Discussion)

Thank You Marion, There are free educational, medically correct online classes on this website to help us understand cancer you must understand cell physiology and how cells work and live. There is so much here on this website to read and see and review that you could spend weeks or months here researching all this site offers. Knowledge is power, so take what you want, I hope it helps you as it has me,   Thank you again Marion for all you do here and all the Moderators, you have made this somewhere I come every day to learn something new, god bless you all, Pat

Brian and Barbara,  sorry to hear you are dealing with an uncertain diagnosis, on a positive note, early stage diagnosis is difficult, but also is curable. Your cancer is not so advanced that it is obvious, consider yourself fortunate, Be vigilant and seek answers. I wish you the best possible outcome, you are a prime candidate, remain positive, Pat

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(6 replies, posted in General Discussion)

Daisy, everyone is a bit different but some become jaundiced and some do not, some peoples kidneys can keep up removing bile  ( bilirubin ) from the bloodstream while others can not, therefor they become yellow colored in the eyes, skin, Urine is dark yellow orange when bilirubin is present . I believe this is what occurs from my observations and reading here.

Oh Matt, yes, what a wonderful anniversary to be blessed with. Actually I am four days shy of ten and a half years if we are counting. I am hoping for others to come along. I read too much about things NOT going well, and it is hard to be the lucky guy sometimes, survivor guilt or whatever, it is a sweet sorrow to share it but yes, I have beaten it til now.  Nothing but blood draws and scans. I am happy to say at ten and a half years past surgery I was able to celebrate my sixtieth birthday in April ! How about that? No midlife crisis here, more please..... keep them coming...Ha!    Pat