February 2, 2019 at 12:24 pm #98081JanicereneeParticipant
Celebrating with you, Hercules!!!January 26, 2019 at 2:10 am #98054
Hello everyone, today marks the thirteenth anniversary of my resection surgery at the Cleveland Clinic. My PSC symptoms are still tolerable and most the time without issues. On 1/26/06 I went into surgery at 8:30 am and I woke up about 3 and without my knowledge I was beginning my second lease on life. I went through all the uncertainty all of us go through and I always held hope this would be O.K. and that this would pass. Many scans, blood draws, I did not have this website to access, so my information was limited and vague, there was no facebook or social media ( my how the world has changed in this 13 yrs. ) and I was scared. I attended local cancer support groups but early on I had not met a single person with what I had. I asked my doctors about how many of his patients do well, he said many but could not introduce me to any At the foundations annual conference, I was in a room with over a hundred of us, it is difficult to describe the feeling, the presence of so many that have stood by the great void this disease creates in your life, the threat to our very existence yet here we are all of us at different places in our journey and we are HERE. I will be attending my third conference this week and I am excited to meet new survivors and the many familiar faces from last year. The foundation has made this cancer a less lonely place, a more informed journey, and less frightening. I am proud to be a part of this informational and emotional support site for patients to come to. I hope others can find the comfort I have here , it has made this last thirteen years not so lonely, and it has helped me win. Yes that is right, I feel I have won the biggest lottery jackpot there is, and I try every day to show my gratitude. It is possible to win against this cancer, you just have to believe it. I wish you all my best, PatSeptember 21, 2018 at 2:21 am #97543
Today is my thirteenth cancerversary, the day my tumor was accidentally discovered during a ultrasound of my gallbladder. I am grateful for another year of living life. I had pain on right under ribs which led to an ultrasound which found the tumor, ERCP next determines half of liver needs to be removed. liver was resected January 26 of 2006 with no complications, home in 5 days, returned to work in 10 weeks. finished career and retired in 2010. Then eight years of retirement, there has been no chemo or other treatment. Pathology indicated a 2.5cm papillary tumor and a bile duct condition called primary sclerosing cholangitis. I have appetite problems and sleep issues, but no recurrence. I am doing well, started seeing a chiropractor this year which has helped with the pain in my shoulder incredibly well. Cannabis has helped with appetite and insomnia. My dog keeps me moving and makes me smile often. My Cholangiocarcinoma was surgically cured and life is good. I hope for more of us to see this kind of results in the future, be well, PatMarch 3, 2018 at 6:18 am #96691
Had my spring blood draw, and all seems good as far as that goes, I don’t have my full report in front of me I do remember my bilirubin was 0.02 and my ca19-9 was 5 which is the lowest I have ever seen either. I am not sure if it can be too low , I see my Gastrointerologist in a month to verify but I think low is good on both these numbers. He didn’t want to do a scan as he felt there wasn’t a need to although I have had some pain in the liver / lower right side as I have been pushing my limits on lifting things ( I’ve been splitting wood and building a 455 buick motor for my car for which all the pieces seem to be gravity loving objects ) so much for don’t lift anything heavy. So I can’t whine about every ache and pain, unfortunately at twelve years out the world doesn’t come running every time I have something heavy to move or lift. Therefore I find myself doing more than I should when duty calls. I will do what I can and pursue a happy life and enjoy quiet moments in front of the fire yet this requires preparation and hard work, which is good exercise and keeps us balanced. For now I am doing well and hoping for another fun summer. Be well, PatFebruary 11, 2018 at 5:08 pm #96625
Cathy, meeting you and your wonderful daughter was a highlight for me as well. You are a HERO and a warrior too and I can only say wow two transplants and your whole story should be here above mine ! I hope all goes well for you and I have come home inspired to see doctors and address everything and do tests and take a look where needed. I am looking forward to seeing you next year so lets take care of ourselves until then so…. until then, PatFebruary 9, 2018 at 12:53 pm #96601jathy1125Participant
Hercules, you are my HERO, I was so excited at conference to meet the famous “Hercules”!! I finally had met some one with more CC longevity than me and look up to!! Your presence at conference was one of my highlights!! Keep inspiring!!
CathyJanuary 26, 2018 at 5:41 am #96533
Here it is….January 26 again, the day that a cleveland clinic surgeon performed a curative surgery on my hilar cholangiocarcinoma. The best part is there has been no recurrence and no further treatments. I have lived the best years of my life since then, a gift that I continue to collect on to this day. My surgeons name was J. Michael Henderson aided by dr. Mackey, a young resident at the time but a great doctor emerging into practice, and I am grateful beyond words for how my case has gone.Dr. Henderson has retired since then, (so have I ) and I wish him a long and happy retirement. I did not have this website back then, I remember hoping to meet someone who has walked this road, and done well, I asked my doctors about how many patients they had that have done well, and they said many but privacy laws were just emerging and they could not cite specifics. I found this site in 2012, so I went 6 years with no real information or knowledge of statistics. The numbers are scary if you know odds and percentages and perhaps it was best I was unaware of the odds I was facing. I did well, outlived my dogs, rescued another, and have continued to live a happy rewarding life. I love sharing my story here as it fulfills a role I wish was present when I first faced this awful disease with most of it a big unknown, and I did not get beaten by fear. I am here to share my story and hopefully encourage someone facing the same huge chasm of unknown ahead of them. It can go well and in spite of a scarred condition known as primary schlerosing cholangitis, discovered in pathology of my bile ducts removed with the gallbladder. This condition elevates risk of the cancer forming again,however thus far it has not. I always held hope that it would not, even without an example of success, as my case has become. I remain grateful and hope to give back any way that I can.My tumor was discovered early and created pain while just two cm. and was operable. I went home 5 days after surgery, and went back to work 10 weeks after. I am able to do everything I could before other than lift heavy objects. I was 49 years old at the time of diagnosis, and at 61 I feel good. I have arthritis and take an anti inflammatory medication that helps me . I have a restriction in the bile duct which the arthritis meds seem to help with.My name is Patrick, and today, January 26th, 2018 I am celebrating 12 years of being cured of cholangiocarcinoma ! What a wonderful proclamation that is to write….may god bless all facing this cancer,I hope more of us do well in the future, Pat
September 23, 2017 at 2:45 am #69349darlaParticipant
- This reply was modified 1 year, 7 months ago by hercules.
- This reply was modified 1 year, 7 months ago by hercules.
Well said Pat. Words we should all live by.September 22, 2017 at 11:44 pm #69350
Thank You Darla for your upbeat reply, and Positivity, I am glad your presence on this site has continued,you have a wonderful way of writing thoughtful, supportive posts. My reference to human perils other than cc is many things can go wrong in our lives, we are all brought here by this one awful disease and life is temporary, live life as such, cherish every day you get, do all you can while you can,do it today. If you are a caretaker or a patient or a family member, do what you love and do it often, do what someone else loves and do that often too. Life is a swift moving trolly, get all you can from the ride, it’s over before you know it………PatSeptember 22, 2017 at 9:02 pm #69351positivityParticipant
You have an incredible story Pat, and I wish one day most people with CC can manage and live with their condition for a long time. I also understand the uncertainty of life and no one knows how a body will react and will not be similar to someone else. I would also like to see chemotherapy not as a choice, but have alternatives which are better for the body. It’s harder to accept when you know the person did not cause the illness by drinking, smoking, doing drugs or being careless about their body.
Thanks for continuing to share and support the community.September 21, 2017 at 2:28 pm #69352darlaParticipant
Posted on your other posted, but I agree with all you have said here too. Here’s to 10 more years!
DarlaSeptember 21, 2017 at 9:13 am #69353
Hello everyone, today is the end of summer, beginning of fall, and my cancer anniversary, twelve years past diagnosis of Hilar cholangiocarcinoma and P.S.C. and have just completed another year of cancer free life. The elderly woman I have helped for four plus years passed away July 3rd. after 96 years of life, and I witnessed what life is like in a worn out body, living forever isn’t a viable option as being human has it’s limitations. We all want a long full life yet the physical reality is many things can keep us from achieving it, Drugs, alchohol, disease, accidental injuries, contagious illnesses, wars, all shorten lives, and it would be nice if we could plan our lives like a vacation or a business, but we cannot, as there is the uncertain, unforeseen future. Therefor we must take what comes and do the best we can, seek the best help available, and hope. Live your daily life, and somewhere in there in your busy day, no matter how tough it is, think about someone else. This little act seems to change your whole burden, and people deal with many difficulties everywhere everyday.With turmoil and chaos around the world, regimes attempting to threaten lives by the thousands and yes, there is even uncertainty for the healthy humans as well. I have gotten much in my life, and I learned the most valuable thing is not held or sold, it is your happiness. Enough about life, My story began 9/21/05 after an ultrasound revealed a small tumor inside my left hepatic duct just outside my liver. Next an ERCP to do brushing and biopsy (negative) yet my doctor that did the procedure suspected cc and recommended resection of my liver and bile ducts. I was operated on at the Cleveland clinic on 1/26/06 with negative lymph nodes and clear margins. Pathology indicated the tumor was a “papillary type” which is not common for cc. and the cancer was contained within the bile ducts and had not ‘gotten out’ as he put it. It was recommended that I forgo chemotherapy as it would not help. So my last real treatment was surgery. I have appetite issues which cannabis helps with, bilary restriction issues from the PSC which for now are helped with an anti-inflammitory drug called Meloxicam, one 15mg tablet a day. I eat healthy, walk my dog daily, pursue my hobbies and try to help someone, somehow, every day. Things have gone well for me and I hope in the future more of us can be in the ten year club, take care, PatJune 9, 2017 at 10:19 am #69376
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, PatJune 8, 2017 at 4:10 pm #69375dawnanMember
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!April 4, 2017 at 1:04 am #69374
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
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