hercules
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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, Pat
Hello Fernanda, I am sorry to hear about your mother’s difficulties, as you know, this is a complex surgery and experience of a surgeon that operates only on the liver and ideally specialty in cholangiocarcinoma, did she request a surgical report and a copy of the pathology report which would indicate if she has primary sclerosing cholangitis (PSC) . This is a condition of inflammation many of us cc patients have, which can flare up and be problematic for some, and not for others after resection surgery. I am a resection patient and I have PSC which was without symptoms for many years until recently (10 years) and maybe 3 years of issues . I am learning all the time what a sensitive thing a bile duct can be, and the balance of our digestive system and a natural diet . I found, over time that I was taking an anti-inflammatory medication for my arthritis and it seems to open up my bile duct (or rather I have problems if I stop taking it ) so this has worked for me for a few years now. I am not a doctor just a patient trying to share what has worked for me. I hope your mother finds what works for her, be well, Pat
Randi, it is good to hear from you and congratulations on 9 years, I know you had some tough times and I hope you are enjoying a good quality of life, and you have an incredible story and you are an inspiration to all of us, be well, Pat
Pooh, first big hooray for becoming operable. It does happen, and I also was comfortable with my surgeon
and his plan, and I did not seek a second opinion, this can go well so try to remain positive and hopeful, ( your case and response to chemo has surprised the doctors already) so it seems the positive energy is with you already, good luck, Pat
First,congrats on seven and a half years of life. I have not had any recurrence or Mets to deal with, however I am a long term survivor. Good health and nutrition are key. While dealing with cc one must also maintain the body as you always have, physical yearly, dentist, optometrist, dermatologist, and any other specialist one needs. My point is don’t let other things go while you are focused on cc. Eat smart, I drink a lot of cranberry juice, water, coffee,home cooked meals, get your sleep, avoid stressful people, the list goes on yet it is all common sense, fresh air, exercise daily. do you have PSC ? it sound like you are on your way to success, my best wishes, Pat
Hello, congratulations on 7 years NED, at 8 years you are statistically cured of cholangiocarcinoma. If you have any issues after 8 years it is the formation of a new cancer, not recurrence. You found it early, you were operated on, and you have beaten the odds, kudos Pat
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, Pat
Dancer 41, please don’t feel there is no hope. Doctors only know what they are trained mixed with what they have seen. My HCC was cured by surgery. Perhaps he meant in his experience. where your case is at perhaps and I hate to site rare cases but I do know a few and there are some cases in our community that have had success with the chemo you have mentioned to both give relief to symptoms as well in rarer cases to actually kill the cancer and make a stage 4 patient eligible for surgery. Please remain hopeful and miracles do happen, just not often enough. I wish him my best, Patrick
Lsteffen, welcome to the club no one applies for, thank you for sharing your story with our community, You are seeking common answers, here are a few…whoever did your resection has a tumor sample frozen for future analysis, so don’t panic I believe you can request your sample to be profiled with the help of your oncologist. Eat healthy, avoid greasy,oily, fatty foods, limit or stop alcohol intake, consider a cannabis product if available in your area, We all feel uneasy ‘waiting for a recurrence ‘ as you put it. Live your life, start today, do everything you always hoped to do , take that vacation, buy that grown up toy, have fun every chance you get, and most of all, don’t just sit on the couch and wait for something you don’t want. There is ten out of 100 that skate clean on the old statistics they are citing, things are changing and I was there, there are some researchers that are very excited about some of the breakthroughs made in the past year. There were some hopeful presentations in Salt lake this year and I recommend you go next year (imagine being in a room with more than 100 cholangiocarcinoma patients) There is reason to be hopeful not worried if you can. The stage is set for you to live with a curative surgery so get going ! My best, Pat
In my opinion, you have done all the right things and I salute you for just going around people that were not helping you and finding help. You are your own advocate, and yours is the only voice that can be heard so kudos to you for speaking up. Sometimes even the best hospitals can be overburdened and your choices are good, your pcp is your best ally, he has helped you big time. There are stories here of others that found treatment and sometimes, not often enough, surgery can follow. It is possible that a small fraction do have positive results from chemo and become operable, it is something to hope for and it hurts me when patients feel there is none, You went to a top rated hospital and were treated like you were spun in and not looked at carefully. You seem quite knowledgeable regarding cc and this helps as you seek an effective treatment, MD Anderson in Houston is a top cc hospital, and time is a factor, we generally recommend second opinions and insurance is another whole problem. There is much to learn here and the best cases are found by accident. Good luck and welcome, I am sure others with similar conditions will chime in, my best, Pat
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, Pat
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, Pat
Oh Gavin, it wasn’t like that, we showed our tummies and it was a fun moment, some are a Mercedes Benz tri star and some are like a lexus emblem or a L that is a 45 degree angle, and some are a horizontal 45 so there was something to learn there regarding scars and how they heal. I will say we all had fun and besides the pool or the beach, we generally don’t expose our midsections but it was a rare moment where we were amongst our own. I wish you could make it some year as it is fun meeting people we have only known on the internet and we read your posts sometimes daily, it would be fun to meet you and hear your voice and everything. The people, the patients and caretakers are all wonderful, caring, beautiful selfless people, and we realized one thing….ONLY GOOD PEOPLE GET CHOLANGIOCARCINOMA ….If I can say one thing I could say to sum up the most important thing I came away with. I hope you can be with us next year and experience the best community of people there is in the flesh (take that however you want) hope to see you next year, Pat
Rosi, most doctors don’t embrace cannabis for medicinal use. It is a new pharmaceutical technology that is evolving on it’s own since the federal government has continued to foot drag on rescheduling the drug. The only thing that has drawn the attention of lawmakers is the potential source of money. What other lifesaving drugs are taxed by every level of government that can put their hand out ? Are chemotherapy drugs heavily taxed by federal, state, and municipal taxes ? This makes it too costly for many patients that need it, I sponsored a woman with cholangiocarcinoma that lived in New York and cannabis oil was 1200.00 for 3 grams, sadly too costly for an unproven treatment for her. Her cancer took her and she never was able to even try it. Medical cannabis should be tax exempt for all patients that need it, recreational is a different story, tax it like all other vices, however medical cannabis should be available and affordable to all. I have used cannabis since my surgery, and I cannot say it is why my cancer hasn’t returned, however it is part of what I have done, I changed my diet to more healthy foods, no grease lower fat, daily exercise in fresh outdoor air if possible, and just take care of yourself. I have gotten twelve years of cancer free life after cc, I have had no chemo, no radiation, just surgery and what I have mentioned here, and I believe cannabis research will unlock a cure for cancer or treatments with fewer side effects than chemo, I wish you the best, Pat
another year has rolled by, the resection is still working, I went back to see my oncologist to see about getting a copy of my surgical report and my pathology report. I also asked for a recommendation for a medical cannabis card, which he said he could not. My surgical report was a more detailed report written by dr. Mackey and dictated by dr. Henderson. I found it interesting that after removing the gallbladder and resected the duct, they filled the duct with liquid from the short piece remaining at the ‘Y’ cut and pressurized it to check for a leak, which there was, they redid the resection point of the duct, and upon pressure test 2 it held, it is good to have a great team doing the work while you are asleep. I thought the pressure test notation was pretty cool, like something I would do in a household plumbing job (lol) and I am thankful for the curative surgery I was given twelve years ago yesterday. I hope more successful surgeries come along, Pat
