December 17, 2016 at 10:47 pm #69361
positivity….. Education is a powerful tool. It helps us understand and based on that understanding we are in a position of making the best choice possible.
Choosing a center treating a high volume of cholangiocarcinoma/bile duct cancer is key to obtaining a second, professional opinion. USC in Southern California has a robust hepatobiliary department and the physicians: Dr. Lenz and Dr. Dr. El-Khoueiry are two oncologists “very” familiar with this cancer.
It is unlikely for you Mom to be offered chemotherapy or perhaps any other targeted drugs unless her bilirubin is at 2, hence I am hoping for the stent to do the job it is meant to do.
I much agree with your complaint about the failed stent procedure. We know that stents can migrate and can cause problems including cholangitis, ulceration, bleeding, and perforation, and as you mentioned physician errors have horrible consequences. So sorry.
You are a good daughter by advocating strongly for your Mom in the way you do. I hope your Mom is feeling significantly better and you are able to connect with a specialist real soon.
MarionDecember 17, 2016 at 10:14 pm #69360positivityParticipant
Thanks for your response. My mom recently was diagnosed and I am scheduling appointments with Oncologists. She only saw the GI doctors for the MRCP, ERCP procedures and a diagnosis based on what they saw from scans. They diagnosed the same before the pathology reports. I was extremely displeased with the first GI doctor who did the ERCP, and she did not do a thorough job which another doctor had to redo the ERCP. My mom also experienced complications from the first ERCP which made her more sick. It’s extremely important that people choose a very experienced GI doctor for an ERCP, this takes more knowledge, skills, and tools than your basic procedure.
I am looking into City of Hope , UCLA, and does anyone know about Cedar Sinai? I am glad to hear that there is better treatment today. I am in the beginning stages of looking for treatments since my mom is definitely not a candidate for surgery, liver transplant, or chemo. That’s a good thing! I feel those will make her worse and not worth it. This is due to her age and anemia.
Thank you!December 17, 2016 at 6:58 am #69359
Ubri…..I am trying to understand, does your Mom have cholangiocarcinoma and you too have been diagnosed with this cancer?
MarionDecember 17, 2016 at 5:40 am #69358ubriMemberUbri wrote:My Ma has it and is bedridden at home as she does not want to go to a home or palative care.She sleeps.Now I have been diagnosed with bile duct cancer and am 58.. For 3 years I’ve been going to MRI,ct scans and even 2
Liver biopsy…I am going to try the apricot kernalls instead of chemo.What do you people think about that.Would you do the chemo..HelpDecember 17, 2016 at 5:38 am #69357ubriMember
My Ma has it and is bedridden at home as she does not want to go to a home or palative care.She sleeps.Now I have been diagnosed with bile duct cancer and am 58.. For 3 years I’ve been going to MRI,ct scans and even 2
Liver biopsy…I am going to try the almonds instead of chemo.What do you people think about that.Would you do the chemo..HelpDecember 16, 2016 at 4:26 pm #69356lainyParticipant
Dear Positivity, where is your Mom being treated and is the Doctor an Oncologist VERY experienced with CC? CC is still so new that many in the medical profession have not even heard of it. The key is to be with an experienced Oncologist. We have come a long way since my husband had CC over 10 years ago. There is research being done and new trials coming along all the time. There is no reason for your Mom to not be getting good treatments. I think you mentioned before that she is seeing a GI or a GP and she really needs an Oncologist. Best wishes to you and your Mom.December 16, 2016 at 3:44 pm #69355positivityParticipant
That is incredible! Wonderful for your recovery!
I never imagined to be here or learning about this condition. I didn’t even know anything about bile ducts,not a part of the body you commonly know about. Until my 74 year old mom , out of nowhere was diagnosed with Klatskin tumor, adenocarcinoma. I still want another pathologist to look at tissue sample, although two GI doctors diagnosed it as this before the biopsies. It was determined from the “bad location” which they love to emphasize. It is at both left and right hepatic ducts at the common duct, and before biopsy said she is not candidate for surgery. Even better, I would not want her to go through the torture of surgery as she is already weak from a current anemia. The liver mass was found during an MRI to look for the source of anemia, and instead this was eventually found and finalized through ERCP. The GI doctor also said she is no candidate for chemo, which is also good since she is not strong to handle chemo. This is tough, but there must be some treatment which boosts the immune system, as I think this is what needs to strengthened, and doctors need to look at patients as individuals and not use the same treatments for everyone.
I can’t believe there is no research or studies dedicated to this cancer compared to other cancers. I feel there is not enough advancement and know that oncologists make most money from chemo treatments. I disliked the GI doctors for being extremely negative, and basically didn’t do anything ,but give a diagnosis. Once GI doctor didn’t even have the decency to call and report to us the diagnosis of Klatskins. The only way I found is by getting the pathology report by my own effort, and no doctor involvement.
Again, it’s incredible since I am in the beginning stages, to hear success stories.September 25, 2016 at 4:51 pm #69338lainyParticipant
OK CC Family, I HAVE A GOOD ONE THAT AFTER 8 YEARS we still double over with laughter. My Teddy “relocated ” 5 1/2 years ago. He was a true Sicilian and after he was DX he started wearing his CC bracelet. He could NEVER pronounce Cholangio. We had company from Milwaukee and went to our favorite Italian restaurant. Rocky (yes Rocky) asked Teddy what was on his bracelet. Teddy says, “Oh that’s my Cancer”. Rocky says, “No I meant what does it say?” Teddy answers, ” Angelo Carcinoma”. Leave it to my Teddy to make a Sicilian our of his Cancer!! I thought I would choke trying not to laugh at the time. And, YES, HUMOR is the best way to get through bad times or any time.
Our humor at CC was during his DX. He was very jaundice and I looked at the ONC and Teddy and I said, “You know I don’t like you in yellow!” That time they cracked up.September 24, 2016 at 1:16 am #69340mvprattParticipant
Loraine So glad to provide a laugh because we certainly need them right. ha ha I know that I tend to do as much laughing as I can… I think it is good for our souls and provides some levity to our so serious lives.
I look forward to hearing others stories so I too can have a good laugh and celebrate how we all are surviving this cancer one day at a time
MichelleSeptember 23, 2016 at 10:42 pm #69339lorrainedavisParticipant
sitting in chemo session 5 right now, love all these stories, they help so much. Michelle you made me laugh, thank you!
LorraineSeptember 22, 2016 at 3:21 pm #69342maikkiParticipant
Eleven years a survivor is truly something to celebrate! I am a one year and nine month survivor, but who’s counting? I also had PSC, but that was considered cured also, as I had a liver transplant to remove my intrahepatic cc tumor as that was the only option. I can only hope for you that you continue to feel well and the PSC does not cause a recurrence. I believe attitude and strength is half the battle and you clearly are living a life that is healthy and happy. It is people like you who make it easier for the rest of us to believe we can also make it 11+ years post diagnosis. Thanks!September 17, 2016 at 12:26 am #69343herculesModerator
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, PatSeptember 16, 2016 at 10:43 pm #69344whatnowParticipant
as a ‘newbe’ to this group, survivor stories (recent) are very soothing.
Keep them coming
JanetSeptember 16, 2016 at 10:14 pm #69341
Michelle’s Story (Mypratt)
I am not sure where to start this post other than to say I am a cholangiocarcinoma survivor of 5 + years. In addition to being a surviovor I am a wife of 19 years, mother to two amazing-teens one 19 and the other 16 years old, foster mother to a developmentally delayed adult, an aunt to amazing nieces and nephews, sister to two younger brothers, Nurse Practitioner serving our veteran population, and so on and on… The reason I start with all of these roles is because it has been so important in my survivorship to not let that be my only story…..
With that being said I will share my story of diagnosis and then of when the ” ah ha” moment came to me that I can say ” survivor” .
It was the summer of 2011 and I was going to take my children to visit my younger brother in NJ for the 4th of July and I was going to be crazy enough to drive by myself instead of flying. About two weeks before my trip I was at work and had terrible right sided pain with some nausea. I being the medical provider assumed it was a gallbladder attack. I had my colleague take a look and she too thought maybe gallbladder but was a bit insistent that the pain was more towards my liver. I went home and went to bed due to the pain. The next morning the pain was gone. I had already made a doctors appointment and thought that if I didn’t keep my appointment then for sure i would have another attack while on I- 95 in the heart of holiday traffic outside Washington DC…
So I went to the doctor and she did an ultrasound. Well that ultrasound did not show a bad gallbladder but instead a mass in my liver. From there it was on with the testing. My doctor ordered a MRI the next day. I knew the minute I came out of the MRI that this was not looking good…. the tech said ” you should not worry about anything just enjoy your trip and family.. thats what really matters.” So I frantically waited for the results….. this I believe was the birth of the scan anxiety we all know so well. I waited and waited while getting ready to leave the next day and finally called the doctors office to get the results… the nurse kept telling me that it wasn’t back. I finally pulled my NP card and said I knew for a fact she had the results as the test was stat… and that someone needed to read me the impression or I was going to come to the offie and wait until someone did. This worked well and finally the doc got on the phone and said she didn’t want to ruin my holiday so she was going to wait until i got back to tell me I had metastatic cancer…… well that was not what I was expecting. From there it was what we called the ” Great Caner Race of 2011. I was sent to see a liver doc asap – from there mammogram, scopes for upper and lower gi, and finally the liver doc called the surgeon because everything was negative. By this time I started freaking out… I couldn’t understand how I had metastatic cancer and felt so normal. It didn’t make sense. My surgeon team( heptabilliary) ended up being one of the best in the south and immediately there was more scans, biopsy, and finally diagnosis. My surgeon then told me he could fix it… that was all that I needed to know. That has been always all that I needed to know.I then was scheduled for a chemoembolization two weeks prior to my surgery and then the right hepatectomy and then radiation with 6 weeks of oral chemo. Poof… my gigantic tumor ” ms. Sally toad ” as I like to call her was killed, removed, zapped and warded off by this chaos. All of this took place in the span of 3 months. I thought I would never have to see this ugly cancer again. If I got to the 5 year mark I then would consider myself a survivor…. a winner… I beat it.
Fast Forward to August 23, 2015 and I am in the emergency room for what I though a herniated disc with some nerve compression…. the worst pain i have ever felt. I am demanding that someone do an MRI of my back and not give me another steroid or pain pill again. I had gone several times throughout July trying to get my back fixed. Because I pulled my NP card as soon as I got there I finally was going to be imaged. Never expected that Sally Toad had left some tadpoles with her departure…. I had a tumor taking up most of L5 in my spine and mets to my lungs. The ED doc didn’t know how to tell me …she just handed me the imaging report and occasionally asked if I was ok…. Well…. not really ok for sure… Ended up admitted to the hospital.. on pain meds and high dose steroids so that i could walk.. Had to demand to get my oncologist involved … as they had not notified him and from there the games began…. I had immediate radiation to my spine to kill that little guy hanging out and to get me walking and out of pain… I had radiation to a small ” menigioma” to ensure it was not cancer and chemo since. I have to date 27 chemo treatments with gem/cis.
Fast Forward again and I am attending the CCA conference in Salt Lake City. I have brought my best friend and it so happens she is a NP also to make sure we are able to take in all the info from the conference. I am busy listening hard to the speakers but she is out talking to all the amazing people there . We go up to the room at the end of the day and she reminds me to reach out to some of these folks and that she found someone else with mets to bone and I should talk to her later…..that I should share my survival story. I looked at her at that moment and laughed… I couldn’t stop laughing… might have been the pure stress of everything I am not sure what but I remember telling her…. I don’t have anything to share …I lost… the cancer is back and we are back to step one with Ms. Sally. Then it was her turn to laugh uncontrollably… like this was the best joke she had every heard… and proceded to say.. of course I am a survivor … I am still ALIVE despite all the mortality rates and bleak statistics that we read….. I am ALIVE that is what it means to be a survivor. I just laughed and then turned to tears…. because what a moment to have…. I was still alive … I was still fighting and winning … I did not have to go back to step one…. and some folks probably would say I had survivorship going on my 5th year….. It didn’t matter that I was fighting again… I had time on my side … I made it to a full 4 years and was moving into my 5th with no problem….. Hell yes I was a survivor……
From that moment on it has been my passion to make sure the word gets out….. there are those of those that have time on our side…. who have made it past the bleak and outdated predictions… That people being diagnosed with this disease can read somewhere that people do live and are living with this cancer…..
So I aplologize for the long post but I wanted to share my diagnosis journey as many of us have had a difficult time… I also wanted to share my moment of celebrating that I am ALIVE, this cancer has not taken my life from me and that I am a Survivor despite having to pick up the fight again… My plea with my oncologist is just keep me alive one more year…. and so on as medicine is right on the brink of having the answer…. i just need to keep living one more year until medicine catches up…. until that happens I will continue to fight and celebrate my survivorship!!
MichelleSeptember 16, 2016 at 3:46 pm #69345herculesModerator
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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